"If you value acceptance, empathy and unconditional love, you, too, should welcome a child with Down syndrome into your life."
Everybody's circumstances are different. So change that "should" to "could", and I would totally agree.
Could. Not should. Small change - big difference.
37
I have heard stories of burn victims that, even after recovery, blame the care givers for the torture they endured and admonish them never to put another human being through that again. There is a possibility that those with D.S. understand that their minds are less capable than most others around them. I, for one, would rather have died than lived through either prospect.
15
And ... the ethical case for shading a woman's fundamental right to control her reproductive destiny with your personal beliefs?
I absolutely support a woman's right to bear any child to term, and support reasonable expectations about the social support that should be provided. I've known people with Down syndrome and they are generally cheerful, generous, beautiful people.
That said, I can't understand wish fulfillment as policy. "Oh, I wish more parents would have Down children." Given the state of the planet, I wish more people would have no children at all. What has that to do with you, your wife, and your family planning?
It seems to me that "bioethics" (whatever that actually means, in law or in practice) might focus more on the ethics of mass extinctions in trade for more consumers.
"Acceptance, empathy and unconditional love" -- sweet sentiments. Until one grasps the innuendo that those who make a different choice are lacking those attributes.
24
it's called your "birthday" because that's when you're born before that you are not born
someone else's abortion is no one else's business
having said that god (or whomever) bless anyone who raises a handicapped child
i knew in my heart that i/we did not have the strength ,not to mention the financial resources to deal with a handicapped child and we had amnio during both our "late life " pregnancies i assure you that we would have terminated them if there were negative results we were blessed both times
but i maintain that it was and is our right to make this decision
14
My wife and I have a 14 year old son with Down syndrome who also suffered from infantile spasms as an infant. He's severely impaired, non-verbal, wears diapers, etc. We are very fortunate that we have resources to provide care for him and fortunate that Michigan provides excellent schooling to the age of 26 for persons with special needs.
If our resources were less, it would be a terribly difficult situation for our son and our family.
I would never cast aspersions on a woman who decided to make a choice to end a pregnancy in a similar situation.
45
I love my child with severe disabilities dearly, but if I knew then what I know now I would have chosen differently.
51
Am puzzled by the headline. Has any couple ever been stigmatized or condemned for having a Down syndrome child? On the contrary, I think a huge majority of Americans support the view outlined here and deplore (while respectfully acknowledging) the right of parents to make a different choice. There are sincere and well thought out moral arguments on both sides.
5
My healthy child falls off a trampoline and breaks his/her neck. Do I then "terminate" her/his life because she/he is now disabled? This article grieves me so much to think a child in utero is terminated because it's not perfect. Hmmm where will that road take us??
9
The author is a doctor and therefore not poor. He is practicing in Canada where all the medical care his child will require is readily available without extra cost to him. Quite likely his wife is at home or could be if she and he wished and if not a nanny and other caregivers can be hired. I understand his feelings but I think he is tone deaf. Having such a child would be an unmitigated disaster for anyone or any couple without significant means and/or significant family support here in the US.
38
There are two over-arching trends I have noticed in the comments:
- It's my choice, and there are good reasons why I would choose against carrying a DS fetus to term.
- I love my DS child, and I would do it agaon in a heartbeat.
These are not mutually exclusive.
11
My son Malachi was born with Down Syndrome 35 years ago. He is truly a blessing. I learn so much from him. He is a gift that never stops giving. He is an AMAZING individual.
13
A good friend of mine had a child even though that friend had a chronic illness. That friend became a "vegetable" when her child was twelve. The father was overwhelmed, with little financial or family support. Had I not been able and willing to parent that child in her stead, I don't know what that child would have done.
Many people hearing this story have criticized my (now deceased) friend as selfish for having a child when there was good reason to believe she might not be able to raise such child.
Yet when women say they don't think they can cope with raising a child, for whatever reason, people call them selfish as well.
It seems no matter what choice a woman makes, people feel it's their place to judge.
35
Given that the drive to reproduce is an anachronism, rooted in the survival of the species, one would have to ask, is it at all ethical to have children?
10
It is a personal decision. We had an concerning NIPT test result. We decided to have an amniocentesis to be sure. We had decided to keep the baby no matter the results. But, we wanted to be prepared for the baby.
I knew someone that was surprised at the birth of her beautiful baby with Down’s. She loved that baby and has been an amazing mother, but described it took some time to adjust.
Permitting one to have the information empowers a family to be at peace.
7
I have no idea what I would have done had I been faced with this decision. I do have a few questions, however, and I apologize in advance for my ignorance.
What happens as the person with Down Syndrome ages and his or her parents can no long give adequate support or die. What are the costs associated with raising a child with down syndrome over and above that of other children. Are there special needs for education. What strains does this put on other children in the family or on your mrriage.
Thank you to anyone with experience who can furnish information.
10
I do appreciate your point of view as a parent of a Downs Syndrome child, and an expert in bioethics. Your voice is a very important one.
Your wife's voice is also important, and I would be very interested in hearing her point of view (I'm not sure which one of you is the primary caretaker, but I place more value on that person's opinion).
My neighbors struggle mightily with their child with Downs. Most of the burden falls to her mother, and often she feels completely overwhelmed with the lifelong struggle that lies ahead. The daughter is 9, and already they are making plans for her care after they die. Despite social services, support groups, and an army of family support, she still cries daily from the struggle. I can't imagine her burden.
You made one decision and don't regret it. Other people make the same decision and have regrets, and that's okay.
31
Do you ever think about the child's life when you are gone? The state, in this and many countries, has no obligation to take over your caretaking role, and few people are wealthy enough to set a handicapped child up for life. When the state does take over, the burden is then borne by the taxpayer, whom presumably you did not consult beforehand.
This decision is personal, and, to some of us, selfish; but the fact that it is your decision does not necessarily make it the "ethical" choice. In fact, by framing it as exactly that, you are implying that the opposite decision is unethical. Do as you please, just don't lecture us about the ethics of decisions you may not agree with.
29
I have a bioethicist view of first trimester abortion. Prior to the development of the brain, you are not a person (same views of brain dead individuals).
Theres no compulsion that every sperm impregnate an egg, nor that every zygote implement itself (indeed many don't).
Individuals deciding to ensure that what will become a person is healthy is to me a reasonable opinion
29
Beautiful essay, but I have to disagree with the notion that we do not need more laws to address this issue. Parents of special needs children need programs that will provide the support needed to raise them successfully. Perhaps you have that in Canada. In the U.S., we do not need more laws that punish women. We need laws that help parents raise all children in the best way possible.
11
I fail to see the "ethical" dimension in the article. Mr. Kaposy and his wife had a choice, made the choice, and are happy with their choice. Wonderful. But in what way was that choice more "ethical" than another?
24
They weren't choosing to discard old pillows; they were choosing whether to carry a fetus to term and give birth or terminate a human life simply because it was not "normal" or convenient. The choice is debatable but it is irrefutably chilling you can't see an ethical dimension in the article.
6
More than 20 years ago two friends in their early thirties had a baby born with Downs. At the time the test for the disability was not routine and Benjamin was born, with the syndrome. A few years ago I asked his mom what she would have done had been tested and I will never forget her response: "I may have, in fact, I probably would have had an abortion. I'm so glad I didn't have the test because Ben is in our lives. He's a part of our family. He's my son and I can't imagine my life without him."
Those people who define humanity by "normalcy" only are more than troubling, they are inhumane. And yes, health care and home care services are inadequate in this country. And yes, a woman has and should have the right to make her own reproductive decisions. That doesn't mitigate the inhumanity of a decision that considers only one's own life to the exlusion of the life of a person with DS.
Dr. Kaposy is not suggesting women's rights be constricted he is suggesting men's and women's humanity be expanded.
9
Many years ago I worked in school for the learning disabled. My students were 16-21. And our job as teachers was too impart life skills as well as training our students for various jobs. In first my class the majority of my students were Down syndrome. I grew to love my group and remember them fondly to this day. Across the board, when he came to parent teacher conferences-- with usually older adults--they were very worried about the future of their child. What was going to happen to their child when they got to be an age where they couldn't look after them? Or when the parent died? Were there group homes available? Was it fair to other siblings to carry the burden of their sister or brother?
A lot has changed since those days. Children born with Down syndrome are no longer hidden away-- they are part of the culture. There are many more programs that help to develop their skills and abilities. Some have gone on to successful careers.
In conclusion I think it's a personal choice whether to have a child that may or may not have certain amount of learning problems or to terminate the pregnancy. Not every family is up to the task. I wish Mr Kaposy and his family all the best!
2
This article completely ignores the many physical complications of having such children. Down Syndrome sufferers are far more likely to need heart surgery and suffer from medical conditions like leukemia. As they age into their forties they inevitably sink into dementia.
It is completely immoral to bring a child into the world with such medical issues.
26
This is a tough topic. My perspective comes from having raised a child with what others would likely consider "trivial" issues in comparison to Down's Syndrome ... and being brought beyond the limit of what I thought I could handle.
But none of that was so apparent at age 9. When Dr. Karposy describes a loving, mostly-happy child of 9 -- mine too.
It started to go down hill in late middle-school, and just kept getting worse for a long time. We have scraped through, with big scars that won't ever go away, for all concerned.
This exposition is sort of like that joke about the guy who jumps off the Empire state building and was heard to exclaim as he passed the 50th floor: "why does everyone say this is a bad idea; it's been great so far!"
I'd take this more to heart if Aaron were in his thirties, and his parents were in old age, or near to it.
45
Thank you Professor Kaposy for this interesting essay. It seems to me that many of the commenters here are having trouble viewing a woman's decision to have an abortion as a choice with moral dimensions. Even if we all agree that a woman has a right to abortion that supersedes the state's interest in regulating abortion, many legitimate ethical questions about abortion remain. Whether or not it is ethical for a someone to choose to abort a fetus with trisomy 21, which in most individuals is associated with mild to moderate intellectual disability, is a question whose implications will continue to grow as prenatal testing for diseases and disease risk factors proliferates. And if you can think of one reason for which abortion does not seem to be an ethical choice, then you should be able to argue that aborting fetuses with Down Syndrome is an ethical choice that goes beyond "It is a woman's choice".
3
It is unethical to view a fellow human being as no more than a means to an end. Forced gestation does just that. Soo until viability the ethical choice is to permit women agency and autonomy. We are not broodmares.
21
Nothing in Kaposy's article suggests forced gestation. He states clearly he and his wife are prochoice. He is merely offering a perspective (formed by experience) that having and raising a DS child can be fulfilling, rewarding and gratifying. You're entitled to your opinion; you're not entitled to distort others'.
1
Another article that puts Down syndrome at the forefront of whether or not to terminate. I have a son, a young adult, actually, with DS. We have lived the full range of human emotions together, as have his siblings. I don't expect them to be caretakers, though I hope they will be an integral part of his life, as they are now. He has accomplished beyond our expectations, and the joys have been great. So have the sorrows from time to time. I have seem amazing kindness in other people, and also the rejection. Yes, a more supportive society would be great and I advocate for that every day. I feel I have been given an eyewitness to the human condition on all its many levels. It hasn't been easy but look around the world and tell me what is.
7
Because current prenatal genetic testing is not able to specify the degree to which a person with Down Syndrome will be incapacitated, it is important to remember that, while all life may indeed be sacred, the gamble as to how handicapped a person with Down will be has very high stakes indeed. The birth of a profoundly handicapped person can be a lifetime prison sentence for the parent. If one lacks the means or temperament to devote oneself to another's physical care, for decades, then the decision to end a pregnancy is understandable.
26
Some Down's Syndrome persons have siblings, and when the parents die, the responsibility is shifted to them, who had no part in the original decision and have their own lives to contend with. Another example: I knew a couple who had a child with Down's syndrome. He was their only child, and they devoted their lives to him. When they died there was no one else to love or care as deeply as they. He was bereft for the many years that he remained living.
18
So what? If one sibling slips into a coma should the other siblings wash their hands of the brother or sister. Families build relationships (and responsibilities) and bonds over the years. That is what ties them together, not that any of them were present to vote on whether their mother's pregnancy should be terminated. The premise of your argument is absurd.
6
Note that the child here is 9. I wonder how this father’s view will change when the child is 49. Many have noted the family is Canadian, thus being assured of health care access, at least. Also, the father is an academic, i.e. employed. He hasn’t sacrificed a career (although he may have lost income if his wife was forced to sacrifice her career) with this choice. Lucky him.
The Guttmacher Institute indicates most women who choose abortion are already mothers. They already know what it takes to raise a child. The #1 reason given for aborting a pregnancy is to protect the children the mother already has. This rationale applies when confronting disability as well. How many resources would a disabled sibling take from the other children in the family, and do the other children get a choice about giving life time care to a sibling when the parent is no longer able or in need of care herself?
I’m all for acceptance, empathy and love, but this op-ed reads as naive. It takes money, lots of it, to care for a special needs kid. Some parents just don’t have it. Have a little empathy and don’t fault them for being realistic.
28
There is a dark but true secret regarding child-rearing, disabled or not. There are times when a parent's needs directly oppose a child's needs, and the parent must win for self-preservation. And one parent's line in the sand is not the same as another parent's. So, let us not decide that all parents must rise to the occasion of caring for a special needs child. Better to let parents make an honest appraisal of what they can handle and act accordingly.
29
This is a poignant and thoughtful piece. However the author disregards scenarios where someone may chose to terminate a pregnancy because they love their family. Many women who have abortions have children already and need to consider their needs too. What if there already is a special needs child in the family but it can't handle two? What if there aren't the financial resources to provide the special care needed and for a lifetime? It certainly is reasonable to suggest that having a Down's syndrome child may turn out much better than people fear but it is also reasonable and respectful to acknowledge that women who choose to terminate may have actually thought through their life and family situation and made a well considered and painful choice.
As for legislation that says abortion should be illegal when a birth defect has been detected or even might just be suspected - on the face of that it just silly, but obviously is part of the overall push to make abortion first unavailable and then illegal.
23
I agree, the desire to have a child should also be connected to a desire to love that child unconditionally.
I think this debate is ethically distinct from the broader debate over whether any abortion is ethical. Some people choose to have an abortion because they don't want to have a child, for any number of reasons. But it appears that people who abort Down syndrome babies are entirely ready and willing to have a child, just not a certain type of child.
They want to be able to make a choice about what type of people are brought into the world. I think this is, as George Will argues, genocide. He mentions Iceland (with its Nordic welfare, for those saying the author's ideas are influenced by Canadian welfare), where the rate of Down syndrome abortions is close to 100%. The definition of genocide is "the deliberate, systematic attempt to erase a category of people." Also, Down syndrome people can of course "lead happy lives, a conclusion resoundingly confirmed in a 2011 study “Self-perceptions from people with Down syndrome.”
Many types of people face many different hardships in life, and one never knows what having a child will bring. But with gene-editing technology becoming much more advanced, there will be many more opportunities to eliminate certain supposedly less desirable types of people.
https://www.washingtonpost.com/opinions/whats-the-real-down-syndrome-pro...
2
As a teacher of students who are moderately to severely disabled, including some with Downs Syndrome, there are many factors that the loss of one chromosome make on individuals. What the writer fails to mention are the myriad health issues that often accompany Downs Syndrome, and shortened life span. Also, a major difference is that for most families, your commitment as a parent will end at a certain point, at the latest by the early 20's ' but with a child with Downs, you are likely to have a forever commitment to being the caregiver to this child, who may or may not be independent with toileting, for example.
There are a variety of ways that Downs Syndrome is expressed, but it is neither a short term diagnosis nor an easy thing for a family to live with. The current movement I see to paint those who choose to abort as selfish rather than sensible seems to be a concerted effort by anti-abortion rights folks.
41
Ummm, that it's human? No further case need be made.
6
This is what it has come to: a case has to be made why a human being in utero should not be destroyed simply because it is imperfect. The lopsided majority of people commenting evaluate this decision in terms of emotional drain on the parents and/or financial cost to society. Hey, why don't we just start throwing handicapped babies out the window?
1
Humans have a flexible definition of ethics and morality. They convince themselves that its is “ethical” to pursue an ever larger population of their own species, through the despoliation of precious resources that belong to all of the planet’s inhabitants, and through medical “advances” that allow humans to live lives that would not be naturally viable - either because of congenital defects or the acquisition of terminal diseases. On the other hand, most humans don’t give a second thought about the immorality of killing sentient non-human animals, for “fun” or to wear their skins, or to use their parts for bogus medical purposes, or as a simple result of ignorance, neglect and anthropocentrism. Humans, as well as a few other apes, are special only in the sense that they are the only species that are capable of malice, egotism and cruelty. If I can help redress even an infinitesimal fraction of the crimes committed by my species against our sentient non-human siblings my life will have been worth living.
8
The nature of parenting is, and should be, that you take what you get, and make the best of it. It is how you rise to the challenges that defines you as a person. Aborting a fetus with problems is a failure. While extreme measures should not be taken to ensure a baby's survival if they will result in handicaps and disabilities, I believe, respect for life is inherent in our culture and one of it's most important and significant characteristics. Abortion is not a meaningless act.
4
There is also a strong ethical case for not having a child with Down's syndrome. To assure adequate support for such a child through out its life would cost the parents a fortune. Many people do not have the means to assure that a Down's syndrome person would have access to the necessities through out their life. Is it ethical to produce a child which one cannot care for?
22
I did CVS testing with all my pregnancies with the absolute intention of aborting in case of Downs or another *serious* genetic disorder.
The bottom line is that at 12 weeks a pregnancy is still tentative, is not yet a "person", has no consciousness, and potential parents are well within their right to say "No, this is not the direction we want our life to go in" for whatever reason they want. I didn't want a Downs child. Period.
Each child represents a massive amount of personal, emotional, and financial investment. And while all sorts of things can go wrong once a child is born, and parents obviously have a responsibility to love and care for their born children no matter what happens, the reality is that at 12 weeks gestation there just isn't that kind of unconditional relationship or responsibility yet.
There is nothing wrong with parents saying "nope, not this one, we will try again" to an inch long first trimester fetus that they KNOW for certain will bring them a lifetime of emotional and financial hardship and dependency. Parenthood, and life in general, already comes with enough challenge and uncertainty.
41
Unless you have had a disabled person in your life or have had a lifelong disability, you have no idea. The writer and his wife made a great choice for themselves and their beautiful son. Someone with experience might make a different choice, based on compassion. It is so much more than dollars at stake. For many, there is real, not perceived, pain and suffering.
21
Evidently in Mr. Kaposy's world, Down Syndrome does not produce a bleak impact on lifetime earnings. The quote below is from the blurb to his book on Down Syndrome. Would that all the problems of the world were due to ideologies...
"He [Kaposy] argues further that parental expectations are influenced by neoliberal ideologies that unduly focus on the supposed diminished economic potential of a person with Down syndrome."
13
I think the writer misses the point, blinded by their socioeconomic privilege. Some people can’t afford all the additional services needed to raise a disabled child. And some people don’t have the financial resources to leave a trust for their adult disabled child to live well-cared for and attended to when the parents have died or are no longer able to care for their child. Some people don’t have the education or financial resources to care for genetically or neurologically normal children, much less manage the challenges of a child that inherently needs more from the parents. Yes, for a family with two healthy parents, plenty of money and education, other healthy family members, welcoming a disabled child is the empathetic choice. But not everyone that values acceptance, empathy and unconditional love is in a strong position to care for a differently angled child.
31
As far as I can tell from this article, there is no down side to having children with Down Syndrome. I saw no mention of negative consequences anywhere. Unless the writer is leaving something out, I'd have to come away with the conclusion that all those people who fear a diagnosis of Down Syndrome are worried about nothing.
21
Thank you for your beautiful statement. Many years ago one of my colleagues was told her unborn son had a high probability of Downs Syndrome. She was absolutely bereft, and also pro-life. When she told me the news, I was unfazed. "So?" I told her I had, at age 40, come to the realization that my chances of having a Downs child were pretty high, and had decided it simply did not matter - I would love unconditionally any child I bore, adopted or otherwise found under my roof. I was never able to carry a pregnancy to term, and accepted my fate. My friend's son was born with a heart defect which was corrected at 6-months - he did not have Downs.
We do not need to live in a world full of "perfect" people. As recent times have shown, we have become a country separated by "otherness." The more we hone our perception of perfection, the more separated we become. We can choose to be better people by welcoming all into our circle, and by doing that, we break down the walls of "otherness."
I came across "Welcome to Holland" by Emily Perl Kingsley. Everyone should read it. I still carry it in my wallet.
8
That "Welcome to Holland" story is so offensive to Dutch people. You wanted to go to Italy but ended up in Holland with the implication it is not very good but you'll settle for it because you are there.
It is one thing to have a DS baby because you didn't know and another to choose it and say it is just as good as a normal child. Who will take care of your child when you are gone? The taxpayers will and we are not very generous.
14
It is no one's business other than the woman's as to whether she continues or terminates a pregnancy, for whatever reason.
31
How do you know that this family has not provided for their child’s future? You make a lot of assumptions that make it easy for you dismiss the right for this child to live. Will you live your entire life without support from the government?
2
"But, in a richer sense, it means choosing in accordance with one’s own values.
If you value acceptance, empathy and unconditional love, you, too, should welcome a child with Down syndrome into your life."
Chris Kaposy (@ChrisKaposy), an associate professor of bioethics at Memorial University of Newfoundland and Labrador, is the author of “Choosing Down Syndrome: Ethics and New Prenatal Testing Technologies.
And if you have a nice, stable paycheck, guaranteed health insurance, housing, private education and, last, but not least, book royalties.
<SMH>
26
My younger brother is developmentally disabled. I grew up watching my mother struggle. Growing up with a disabled brother was hard. I knew that there would come a time when I would be my brother's caregiver and it scared me.
I'm childless, but I had decided that I would abort a developmentally disabled fetus. I'm Canadian so I don't worry about anyone interfering in my medical decisions.
A lot of people claim that my choice means that I wish my brother (and people like him) was dead or never existed. There's no one on earth I love more than my brother.
Our mother died recently so I'm my brother's primary caregiver. It's HARD. I never considered the fear that comes along with being a caregiver. Maybe it's because I'm childless. I never felt what parents feel when their child is helpless and completely dependent.
We're Canadian so we're very lucky. We get support. My brother is a happy and healthy man, living at home. My mother always said 'thank God for Canada'; I do too. I can't imagine what Americans have to deal with.
I have the right to choose how I want to live my life. To compare me (and people like me) to Nazis is riddiculous. Nazis are the people who marched in Charlottesville. I don't want to kill all disabled people. I just didn't think that I was strong enough to raise a disabled child. I don't know if I'm strong enough to spend my life caring for a disabled man but I promised my mother on her deathbed. I intend to keep that promise.
50
With all due respect, I disagree. A friend of mine would still be alive today had she made a different choice. After giving birth to a severely disabled Down child, she was unable to handle the overwhelming stress and guilt, and she ultimately broke down in a psychotic episode that led to the death of both the child and herself. I sincerely hope that this article does not lead other naive people to a similarly horrific outcome.
38
What a heartbreaking story, I am so sorry about your friend.
11
I wanted to say thank you for not killing your baby, but I thought it might be a bit crass, so I will just say I think that you did the right thing deciding that life is precious, no matter what. I wish that there did not have to be an ethical case for giving birth to any baby. I wish that we lived in a place that protected life no matter what. I feel that if your life is in danger as a mother you of course should be able to have a safe abortion. That is common sense, but its hard for me to imagine any other situation that warrants the killing of a child in the womb. I was over heard having a conversation about abortion once and a woman said, what if your wife was raped and was pregnant, wouldn't you want her to have an abortion? While I thought the person very crude for speaking about my wife in a theoretical discussion in that manner, I said with all my heart no, and I am sure that my wife would not want an abortion either. I asked her about the situation, and she agreed, killing a baby would be the worst thing to do following a horrific crime. I know that this is not a popular attitude. I was adopted and if I was a little younger, an abortion would have been an option for my birth mom. The horror I was filled with, to realize that I was almost aborted, just because of ? convenience? I could not envision a situation where it would have been ok to have been aborted as a fetus. I challenge any of you to think what situation would have made it ok to have aborted you.
2
You wouldn't have known anything about it.
26
Not everyone is as happy to be among the living as you seem to be. You are within your rights to become a parent with someone who cannot imagine having an abortion, but I hope you realize that others' choices are no reflection on your worth as a human being. We are free to have varying hopes, dreams, and fears. And we don't know for sure that the unborn possess the human desire to be alive like most adult humans do.
I hope you had terrific adoptive parents, and that you have been (or will be) a good parent yourself. Please try to broaden your inagination, though, and realize that not everyone's blessed with great parents, good partners, and good genes.
No woman who has an abortion does so with no soul-searching.
Best wishes to you and yours. Truly.
7
And a one year old baby who was murdered in his sleep wouldn't know he/she had been murdered, either. Is your point that it's alright to murder anybody who wouldn't realize he had been alive in the first place?
It isn't even rational to expect to be unconditionally loved. The possibility of becoming hated limits the misbehavior of normal people.
Nobody gets born by informed consent. Based on who I am now, I would not have wanted to be born without the mental and physical capacities to deal with the challenges of modern life.
8
Beautifully written. This piece puts a lot of potential parents to shame. If they knew their child would grow up with a myriad of other problems, because they all do, would they also choose abortion?
1
Why is it a positive attribute of this piece that it puts people to shame? Potential parents are exactly that, potential. They absolutely have the right to chose when to make that potential a reality. Nobody should ever be in a position to be forced to bear a child she does not feel she can raise properly. It is hard enough with all the resources in the world and a normally developing child.
27
Shaming was the point, exactly. All the positive stuff was just fake window-dressing.
13
Dr Kaposy, you may make all the arguments, ethical, social, emotional, personal, that you wish, as long as it clearly remains the decision of the parent/s who would be responsible for the child upon its birth, as it did for you and your wife regarding your son. One reason why fetuses with Down syndrome are frequently aborted is because it is a disability that can be identified early in pregnancy. Many parents with special needs children did not have the opportunity to make the decision for their family due to the nature or cause of the disability. Perhaps they would have chosen abortion or perhaps not, had they had that opportunity. Such an intensely personal and monumental decision should not be made by others in a free society. Should parents choose to give birth to a special needs child, society should support them in every way possible, but it should also avail them of the choice to make for their own lives and families. It is possible to be rational and compassionate about these kinds of personal decisions, as it seems many other countries are, but in the US, that appears to be impossible.
12
You say that it should only be the choice of the parents, but then expect that "society support them in every way possible." But should it be up to the parents? Considering that most parents are not medical experts, and have emotional proximity that makes it almost impossible to see the situation objectively, perhaps decisions like this should be up to society, namely the law and the opinions of medical experts, rather than solely the parents. A child is an independent being with its own rights that must be protected; it is not simply the property of the parents to do with as they please.
7
If society can compel people to continue pregnancies they don't want, it could also conceivably compel people to terminate ones they do want. Whether or not to give birth is not an objective decision to be made by others, but an intensely personal one, and should be left up to the individual pregnant people and those they want to include in the decision. A fetus is not an independent being. Once born, however, a child is an independent being, part of society, and deserving of its support. In my opinion, of course.
2
I support the ability for parents to choose either to abort or keep fetuses that clearly have down syndrome or some other severe disability.
The problem with this article though, and many of the comments, is that it continually refers to people with down syndrome as "children." Absolutely, your child with down syndrome can be beautiful and wonderful to you, and they might still bring light and joy to *your* life, but there needs to be much more mention about how people, *adults*, with down syndrome feel. What do their lives primarily become as they grow older? What is it like if you basically don't date or can't have children? Should they be allowed to have children when they know, long before an ultrasound, that their children will be forced to have down syndrome? Making the best of a difficult situation does not make that situation beautiful. Some people can handle the challenges of life gracefully without breaking, and others can't. Furthermore, we all know *some* people can have very functional and fulfilled lives with down syndrome, but I know from experience that some absolutely have no chance of an independent or functional life. We can't act like this diagnosis is a single, even thing we can put our finger on.
23
"Making the best of a difficult situation does not make that situation beautiful." An excellent, pragmatic point.
18
Here are some answers to your questions about the lives of people with Down syndrome, from a study of "self-perceptions" among DS people ages 12 and older:
"Among those surveyed, nearly 99% of people with DS indicated that they were happy with their lives, 97% liked who they are, and 96% liked how they look. Nearly 99% people with DS expressed love for their families, and 97% liked their brothers and sisters. While 86% of people with DS felt they could make friends easily, those with difficulties mostly had isolating living situations. A small percentage expressed sadness about their life. In our qualitative analysis, people with DS encouraged parents to love their babies with DS, mentioning that their own lives were good. They further encouraged healthcare professionals to value them, emphasizing that they share similar hopes and dreams as people without DS. Overall, the overwhelming majority of people with DS surveyed indicate they live happy and fulfilling lives."
https://www.ncbi.nlm.nih.gov/pubmed/21910246
4
That's right, ask mentally deficient people, actually the highest functioning ones you can find as the severely affected ones are in bed or institutionalized, if they are "happy". Then use those data in a "scientific" study.
5
What happens to children with Down syndrome when their parents pass away, either when the children are young or when they are adults? Can they live independently? Are there resources widely available for them to be secure and safe and well treated? Do they suffer as older adults because a family safety net has dissipated? I honestly don't know the answer to these questions, but it seems like the author could have addressed them more completely than "their lives tend to go well."
12
Dare we mention the "Quality Control" & "Cost-Effectiveness Measures"? Medical science enabled prospective parents to boost the quality of life for their entire family because early diagnostic enables them to make choices that will impact everyone in the family, not just the developing embryo. Others already pointed out the financial burden that a Down Syndrome child posed to the family and also to the social assistance system. The equation might not be so dire for a Canadian doctor, but it can be financial disaster for many lower income families. Siblings might have to give up many things, such as orthodontic treatment, piano lessons or sports. Is it fair to them? On the whole, a society of healthy children is supposed to be advantageous. To deliberately sabotage the well-being of the whole system for the delight of adding another baby is a bit self-centered.
8
Dear Chris Kaposy, If I become pregnant with a fetus with Down's syndrome I am not sure I have what it takes to raise such a child. Would you be willing to adopt the baby? Please let me know.
28
Barbara,
I would, as would many others.
3
So John, if that's the case, have you done so? There's plenty of kids waiting.
4
Of course he can happily announce the choice he made because he had options, such as the means to care for a person. Others don't have options.
11
Incredibly beautiful article that puts into words something I have often said as well. We have a family member with a developmental disability and the idea of our family without him is unthinkable. He brings more joy and love to our family than some of our "typical" relatives! We cannot know what life may bring us in our future, so choosing to abort a baby who seems imperfect is so naive. True happiness comes not from never having anything bad happen to you, but from how you choose to handle those things.
4
Saying others should just do what you did and things will work out well is naive. Broaden your horizons, please. Congrats on making the right decision for you, but it isn't necessarily the right one for everybody else.
7
What happens to the child if or when the parents separate/divorce or die?
Who provides for the medical expenses connected with the child/ as an adult ?
What if there is inadequate funding for the child/ adult ?
These are considerations that each set of parents need to consider.. Is it any better for a child to be born with such a disability if the parents are not AWARE of and committed to make the necessary sacrifices ??
7
If there are not funds the state picks up the tab. Just like in the US. They go on Medicaid and get whatever that offers. In the US you can't have assets (more than$2K) - you get bounced off Medicare. Any inherited assets must go into a special needs trust. If custodianship or guardianship is required, if there are no relatives the state becomes the guardian.
It’s a long story, but in brief, I’m a sibling of a special needs brother who is now 60 (he’s 2 years older than me). I have been burdened with caring for him my whole life because my dysfunctional parents had little emotional capacity to look out for him. For the past 21 years I’ve cared for him full time (although my divorced parents could have made the sacrifice). I’m his entertainment (he has no friends), his parent, his nurse, his grocery shopper, essentially his everything. My whole world is governed by his multiple needs. Yet, I did not bring him into this world. But I became a ‘mother’ at an early age. Throughout my life, I often wondered what my life would have been like if I had not been burdened with his care. It has been very hard. Frankly, I long for a few years a freedom before I die. In other words, it would be nice to outlive him for at least a decade or two. Please keep my story in mind when you weigh in this important topic of ‘welcoming’ special needs children into this world.
73
Yours is a heartbreaking story about what happens when parents abdicate responsibility. Thank you for sharing. I hope you find some respite, truly. I notice you live in Washington, if it’s the state, your brother might qualify for adults with disabilities services that could help relieve some of your burden. I hope so.
4
The author and his wife made their choice. That is what choice is all about. It is the proselytizing that rubs the reader the wrong way. A lighter touch, some better editing, and the reader is left to ... choose.
20
I'm not sure if this link has been posted, but I thought I would share it. http://thefederalist.com/2016/06/16/this-girl-with-down-syndrome-just-gr...
She is the only one with DS to have graduated from a DC school earning a real diploma in 22 years, since records have been kept.
7
DC high school, correction.
1
Judging from pro eugenics favoring thread"progressive" commentators devaluing sweet innocent, lovable, non racist people with Down Syndrome. Makes one wonder if an amniosantheis determining whether a child will be born with average intelligence meaning no chance of attending Columbia, Harvard, N.Y.U. would end up being aborted at a scale mirroring potential Down Syndrome fetus?
4
The recent flood of adorable DS kids on social media is not a conincidence. Much like this article, there is an insidious movement to deny choice to parents who receive that diagnoses for their unborn child. Unfortunately, there is no one "kind" of a child with DS and the ones on social media are the exception, not the norm. Some, like my nephew, are severely retarded, autistic and suffering from debilitating medical conditions. We have no idea what his quality of life was because he never learned to speak, was never toilet trained and abused himself. If left alone for 5 minutes he would eat his own feces. He was a danger to my sister's subsequent child and was placed in a group home before he turned 6. Please conjure up this picture along side Dr. know it all's child. My nephew died of medical complications at the age of 11. This article just underlines why choice is important. If a Canadian doctor and his wife, with likely a good income, lots of other benefits and good insurance want to have a child with Down's syndrome
48
These articles are not the result of coincidence. The Washington Post has posted 5 of them in the last couple of weeks, actually all within a week. Most point out (erroneously) Iceland's supposed DS extermination efforts. (Actually, in Iceland it is up to the mother, the state does provide pre-natal testing for all women who want it). Think it through...the anti choice people know that if enough states ban abortions for fetuses with known defects, then justifying any abortion at all will be difficult in the public's eyes, thus making the overturn of ROE easier. This is ALL these articles are about. Complete with cute photos of DS babies, but lacking any photos at all of adult DS individuals catatonic in state homes.
27
I can't believe some of these comments. People with Down Syndrome are people. You commenters who believe they should be killed are people, too -- just a bit more barbaric. Let me be clear: you are not better than them.
10
Another affluent privileged white man (I guess being a “bioethicist” is a pretty good gig) telling women what to do with their bodies & their lives. Please please please go away!
27
Interesting that you assume he's white. Not that it matters in any way.
2
Maybe next, someone from India or China can write The Ethical Case for Having a Baby Girl.
8
In Canada, you get to sit down with your significant other, doctor, or preacher for a private conservation to wrestle with the ethical questions. Here in USA, you can count on culture warrior lawmakers, obtuse Fox News personalities, and mobs barricading clinics to provide unwelcome intrusions into the matter.
22
Or you could adopt an unwanted for myriad reasons or none at all child. Is having children as the planet burns ethical... and if so how many per mother.??
Ethics has nothing to do with this. Where are the editors? adjectives are thrown around and often misued... to suggest a situation which is not relevant at all. The Positives of Having a Baby....
Issues of ethics is what creaated the abortion debate in the first place.
8
This kind of article is so annoying. I really do not care what this guy decided. That's his business. However, no one should have a DS kid crammed down their life if they do not want it. When we chose to get pregnant, my wife was 39. We chose the amnio, and would certainly have aborted if the fetus was defective.
29
Defective? Hoping that your children are without flaws.....
4
I wonder what would happen if parents could test a fetus to see if the baby would be gay? What percent of people would abort a future gay baby? Down Syndrome is one of many conditions that are not “normal” but allow people to live a satisfying life.
4
This is a false equivalency. A gay child will not be a burden on the family or society for his or her entire life. A Down syndrome child will require some level of lifelong support, in some instances extensive support. Resources are limited, both within families and within society at large.
21
You may want to read the play "Twilight of the Golds", ran on Broadway a number of years ago. By Jonathan Tolins. It's premise is on point to your question.
What does being gay have to do with having a genetic defeat of an extra chromosome?
3
For a bioethicist to make no mention of the resources and costs for a family facing a Down's syndrome child, seems to miss an important facet of this discussion. You are a scientist and professor, does your wife work? What did she do before this? To judge the hearts of those who have fewer resources, jobs, family support, income and so on, is a bit heartless, and smug.
32
I work and have always worked full time, middle class and successfully raising a child with DS who attends mainstream high school without anything beyond basic healthcare? Not even family nearby? Not a hardship at all. In fact I’ve heard my daughter is healthier and easier to raise than many.
5
No thanks. I chose not to have a broken child.
10
Jamie, let me say this to you gently. My brother was a darling kid. At 23 he suffered a nervous breakdown and was diagnosed schizophrenic. My nephew was adorable-- and at age 4 was diagnosed with Juvenile Diabetes, which has had too many effects on the family to detail here. I guess you would call them "broken," though they were not born with a pre-determined broken outlook. I am not suggesting that you need to carry a fetus to term that you determine is "broken." Just choose your words mindfully. Please.
6
Your turn of phrase is not conducive towards bringing hearts and minds over to your side, Jamie.
Not a one of us is perfect.
3
Choosing to bring to term a child with Downs' seems to me arrogant and greedy. All the public resources that that child will consume could have been put to better use, helping fellow Canadians whose misfortunes happened after birth. It is life itself that is so sacred? Then save scores (hundreds?) of Africans with the resources that your ego-child will consume.
15
Elaborate, please, on the assumptions you make when you claim that a "better use" of resources is to support those (non-disabled) Canadians whose misfortunes happened after birth.
4
The bottom line is choice. We Had a child who was mildly retarded (developmentally disabled in today's vernacular) and did not know it until his birth. He was a joy in our lives but not so much in his older sister's. Would we do it all over again? I still wrestle with with that choice. Fortunately we had the means to take care of him and give him the best life has to offer, not everyone can do that.Choice, choice, choice.
15
Whos gonna pay for his health care?
6
The gentleman doth protest too much, methinks.
9
"Middle class dreams" have nothing to do with the choice of abortion. Found the remark offensive and elitistic.
13
I'm disappointed to read yet another right-wing oriented article in the NYT. Again, we the frustrated subscribers need to point out the fuzzy, inconsistencies. Where is the "ethical case" promised in the headline? More fundamentally, what is the purpose of this article apart from diverting attention to the alarming crushing of non-affulument families' right to decide their own fate?
17
This is not right wing at all. Not sure what kind of world you want to live in. No one in this article is considering even remotely a right wing agenda. You have to be able to hold the complexity of what the choices are around abortion rights are. I am as liberal as one can get, disability rights is not right wing, seeing diversity as a value is not right wing, making choices in either direction is what abortion rights are not about eugenics/social control. Parenting starts in utero and abortion or not you’ve made a parenting decision.
5
Everyone makes big and small choices for themselves, that's the easier part. But when people make decisions for other people, that's a heavy burden.
Through the ages, teenagers, either philosophical or impertinent, question or challenge their parents: Why did you guys bring me into this stupid world!
Perhaps Chris Kaposy's child might never ask him the question. Seems he is trying to answer it preemptively. He asked: "Why do we have children at all?" Why indeed. His conclusion is that it is "choosing in accordance with one's own values." So it is entirely SUBJECTIVE.
3
Beautiful. What so sad that something like this needs to be written. Do we really need to be told not to murder children? I would say yes. God bless the Kaposy's and their perfect little boy.
2
While seating on a bench in a park I met an oncologist while visiting Cuba.
An incredible human being. He had to retire early to be able to take care of his 22 year old daugher wth Down syndrome. His wife could not longer cope, not only emotionally but physically as well. Their incontinent daughter broke a leg and at 140 lb she could no longer clean her. He loves and sacrificed for his daughter and he was at the end of his rope the day I met him. I understood from him that there are different levels of disabilities when it comes to Down syndrome, and I dont know if there is a way to know before birth.
This is a sad real life story, I though it may add to the conversation
28
No ethical case needs to be made for having a child, with or without Down's Syndrome. The very notion is absurd. There is no duty to kill unborn children who are less than society's view of perfect, or who are predicted to lead lives which will not be "normal."
Don't want a child with Down's syndrome? That's your call; you're the one with the ethical minefield to navigate. But no one, absolutely no one, is in a position to judge this family for forging ahead and willingly undertaking personal hardship so that their baby might lead as happy a life as it can.
We judge a society by how it cares for the weakest among it. If this couple's decision to have this baby makes you uneasy, take a long look in the mirror, and ask yourself what you really stand for.
6
Thank you
3
I wonder if the Canadian bioethics prof will use any of the reader comments in the classroom when discussing this topic.
2
Beautifully said.
2
How interesting that the NYT didn’t seem to treat Sarah Palin’s decision to have her son with the same dignity and compassion as this author has been treated. Is it because Dr. Kaposy is a man, a Canadian, a scientist or a liberal?
2
You get what you put out. SP's own intolerance on other subjects bit her back.
13
How many women would choose to abort if knew their child would have ALS?
Would Stephen Hawking have been born?
3
ALS is not currently diagnosed in the womb. In fact, many illnesses cannot be pre-diagnosed before birth. Anything in life can happen AFTER birth. What's your point? Being born does not come with a lifetime guarantee of good health.
9
How is it ethical to bring a child into the world that you know you cannot adequately care for?
21
Although a child with Down syndrome can offer a host of positives, he or she cannot offer the prospect of grandchildren.
There's no guarantee of grandchildren--ever. I have friends whose children have never gotten married, let alone given birth to grandchildren. In fact, what happens when someone cannot give birth due to infertility? The emphasis on grandchildren is an unreasonable burden to put on offspring, whether they are healthy or not.
7
Unfortunately, this is not true. Friends of mine have a daughter with DS and she had a DS baby. Now our friends are dealing with caring for another DS child at the age of 60, as their daughter is not able to care for her child.
20
Purely and simply. How dare you?
How dare you as a man, talk to women about what is ethical in terms of their own health and life decisions?
For that matter, how dare any woman say as much to any other woman?
23
Down Syndrome Lives MATTER
6
I can't believe that someone that has a down syndrome child feels like they have to actually defend not aborting their child.
2
You'd be amazed by how many ways people chastise others for making childbearing decisions different than their own. I bet the author of this piece has been asked by total strangers, "Why would you ever want to bring a Down Syndrome baby to term?"
2
Just a comment and a question: first, it's the parents' choice. Secondly, who pays for this choice?
6
I'm quite weary of these editorials, whether for or against. What happened to live and let live?
If you want to keep the baby with Down Syndrome, fine. If you prefer to abort, fine. They are both personal decisions so enough with the judgements!
19
"Pro-Life" ends in the USA at birth. Then you are largely on your own.
Taking a larger view: this Earth is over-populated + we use too many resources. Why force ANY parent to bring a child, let alone a disabled child into this world?
17
You are Canadian and have, I suspect, comprehensive and guaranteed health care and appropriate education for Aaron and any other children you may have. This is not true in the United States.
6
Good for you! Not for me.
12
I agree with Multimodalmama that living in Canada makes all the difference in the world. Even having a high functioning autistic child in the USA can be an incredible burden, depending on level of wealth, county/state services, health insurance. I have a friend who can get absolutely no interventions for her autistic child to learn appropriate speech, social language, fine motor control, sensory integration. Before we all are forced by law to accept disabled children, we need a social safety net for them.
7
My daughter, Stephanie, is now almost 38. She is very capable, being "close" to independent but she is not independent. Genetic counseling, as it is called was not available to my family prior to her being born but magically was about three years later when her supposedly "normal" brother was born. But the fact that she has been a wonderful daughter does not indicate to me that anyone should be able to decide for a couple or single mom that they are required to have a child with issues, whatever they may be.
Not all Down Syndrome people have it so good. Many require near full time support, often from people who might not even know them. But generally, I agree with @ChrisKaposy that it should remain a personal choice for the person(s) who will be required to be a parent for life. My social experience tells me that not all parents are emotionally equipped to become a permanent care giver.
Last, I sincerely hope that Steph never gets pregnant since I have read that it is 50/50 that her child would also have Down Syndrome and although Steph is very capable of dealing with her own life, I doubt she is mentally equipped to be a parent herself in a world where discrimination still runs rampant.
12
"If those are the reasons to abort fetuses with Down syndrome, they seem disappointing — they are either self-centered or empty in their narrow-minded conventionality." This is a very biased statement. The author purports to be pro-choice but demeans the choice of others who elect not to carry a Downs fetus to term. The author should accept he and his wife had the ability to choose and allow others the courtesy to choose as well, without judgment.
18
"Thank you for writing this article. I have a daughter who was born with dwarfism. I know that many people would not want a daughter with dwarfism and would abort such a fetus if they could. In fact, a few months after my daughter was diagnosed, a friend who is a genetic counselor emailed me to let me know that prenatal testing is now available to screen for the type of dwarfism my daughter has. The friend suggested that we do this screening for our second child "just to be safe." Ouch! Even though my daughter's life will be different, and harder, than most people's, I hate thinking about having found out prenatally about her dwarfism and making the choice to abort her. She may be different, but that doesn't stop her from being sweet, adorable, funny, independent, smart, silly, and often manipulative. I love her. "
I know a woman who refuses to acknowledge that she married the wrong man who turned out to be abusive. She feels that to regret her choice of mate is to regret having borne her daughter.
I think that it's not a conflict at all to appreciate the silver lining that came out of a choice you wouldn't wish on your child.
But I also understand that's a logical construction that doesn't come intuitively to human beings.
5
A sperm is not a child. An egg is not a child. A child is definitely a child upon being born. Before that moment is a gray area where people disagree a lot and violently. Some extremists believe that a fetus is a child from the moment dad came (Monty Python), saying that birth control is a sin. Others say it's from the moment of conception. Well, a few cells is not a child. We're left with a huge range of beliefs and beliefs on this issue.
I think the smart person skips the theoretical and focuses on the real world, once of compromise and competing needs. In the real world, there are immense complications, like genetic diseases, income, rape, and medical need. It's reasonable to say that there's something wrong with aborting a fetus at nine months, just as it's reasonable to say that there's something wrong with forcing a woman to have a baby with a five-month fetus conceived in a one-night-stand. It's also reasonable to say that a family should be able to choose, from their own situation, whether or not to have an abortion.
10
"If you value acceptance, empathy and unconditional love, you, too, should welcome a child with Down syndrome into your life."
So is the author saying that the choice not to welcome a child with DS means that person does not value those qualities? That sounds like a value judgement to me. Every family is different and circumstances vary. DS is a spectrum of disabilities, from quite mild to severe and not all families are capable of coping equally well. To wish, as this author does, that more people choose to have children with DS is to make a subtle, but clearly negative statement, about those who choose to abort.
14
Those states which would punish people who choose abortion for a Down's syndrome fetus are also the one's that provide no social services for individuals with special needs. They also don't support a livable minimum wage which would enable such individuals to earn a living.
17
Why not title this piece, "The Ethical Case for Adopting a Baby With Down Syndrome"? Surely there are already many Down Syndrome babies who would benefit from a loving adoptive home. It seems selfish to choose your own above others.
10
Iceland aborts 100 percent of babies with Down Syndrome. This is so tragic and hopefully they will rethink this sad practice.
1
Why are you spreading lies? Iceland has no laws about aborting DS fetuses. The woman decides. Please quit spreading false information.
26
How about using birth control after 40?
4
How about waking up to the fact that sometimes even "permanent" birth control fails? There have been women with tubal ligations, and even women with uteruses removed -- not to mention men with vasectomies -- who have still, amazingly, wound up having conceived new life.
8
Ugh. Another man chimes in with ignorance. *Any woman* at any age can have a DS child.
Most children with Down syndrome are born to women under age 35 because younger women have far more babies.
A 25-year-old woman has a 1 in 1,200 chance of having a baby with Down syndrome; by 35, the risk has increased to 1 in 350; by age 40, to 1 in 100; and by 49, it's 1 in 10, according to the National Down Syndrome Society.
9
Let's be honest. Not everyone feels emotionally equipped to raise a Down Syndrome child.
But isn't it eugenics to refuse to let such a baby to be given to an adoptive family that is committed to loving and providing the needed care?
How many Down syndrome children are unadoptable?
"But isn't it eugenics to refuse to let such a baby to be given to an adoptive family"
No, it's not. Isn't it slavery for the government to force a woman to use her uterus in a manner she doesn't want to?
18
Selfish. All about the parents. Nothing about the child's quality of life in the future in a risky world. Poor rationalization, medical research. Nonexistence is better than poor existence. We kill millions in wars into nonexistence.
9
Choice. Such a lovely, and profound, word. Let's keep it that way.
10
I respect Mr. Kaposy's choice, but let's be clear, it was his and his wife's CHOICE. Where does one draw the line in terms of all manner of "abnormal fetuses" detected by prenatal testing? Wherever one and one's partner decide the line is, because deciding to abort or not abort remains what it should be - an indivIdual CHOICE.
13
The study that tells us the lives of people with Down Syndrome "tend to go well" includes interviews with people with Down syndrome age 12 years old and older, which highly suggests that almost all people interviewed were high functioning and young. The extremely high rates of satisfaction with various aspects of their lives, with nearly all participants being happy about everything, suggest that these ratings may have more to do with a desire to please the researcher and the inability to cognitively reflect on their own lives. I'm truly glad Dr. Kaposy and his family are happy, but they do not mirror many of us who have had a severely disabled person in our family.
24
So true. Any real researcher, or even a thinking individual, would question a survey wherein mentally deficient people were asked if they "are happy". You can see more of this on youtube, where anti choice activists have forced DS people to participate in videos, pleading with the world not to kill them. Pure evil to frighten these people into thinking someone is trying to kill them, and putting them in a video, frankly just using them without regard to the terror they are creating in a person who does not understand.
14
"For this to happen, we don’t need new laws; we just need more people to choose to have such children"
And herein lies the truth that is at the heart of this debate. You chose!. The state did not choose for you. The church did not choose for you. A pundit, a priest, a TV anchor, a philosopher, a pro-life activist, or any other third party who will never pay a dime to support your child, did not choose for you.
You, and only you, made the choice that was right for you - and only for you.
Why is it then, that I should not have the same ability to chose - perhaps differently and perhaps unethically - but my choice nonetheless.
22
Children don't come with a guarantee, even "normal" ones. All the worries expressed in the comments can come to pass even if your child doesn't have Down's. Believe me, I know.
4
Each family has the right to make this decision.
13
"If you value acceptance, empathy and unconditional love, you, too, should welcome a child with Down syndrome into your life."
Wow, that's a large set of expectations to saddle a child, let alone one with Down Syndrome, with. No pressure little baby! But it's up to you to make sure that I feel vindicated in my choices!
Maybe consider going to your local animal shelter and adopting a dog instead. A rescue pup will happily shower you with all of the acceptance, empathy, and unconditional love that you want.
23
"If you value acceptance, empathy and unconditional love..."
You cannot argue that people who value acceptance, empathy and unconditional love have only one choice when confronted with a fetus displaying DS, because those values extend to more than just the fetus.
If you value those things you can also devote your life to aiding children in war torn countries.
You can travel to aid in disaster relief.
You can start a non-profit to help the poor, the less fortunate, the abandoned.
Someone who values the above traits... Is it not understandable that they may choose to sacrifice the needs of the few to help alleviate the needs of the many?
...
...
You may claim to be pro-choice, but your argument makes your true position abundantly clear. "Bring all children to term; its what truly accepting, empathetic, and loving people do."
And we should all strive to be those things, right?
I reject your argument. Choice is choice, regardless of the values people hold.
30
Kaposy’s close is clear: if you do not bring your Down Syndrome pregnancy to term, you do not value acceptance, empathy and unconditional love.
When my wife had our children at the ages of 35 and 40, we were more aware of the risks than most. Her sister had recently delivered a trisomy 18 baby who died painfully days after birth. We opted for prenatal testing, intending to abort a pregnancy with chromosomal issues, including Down Syndrome, also known as trisomy 21.
Despite several miscarriages, probably attributable to chromosomal issues, my wife ultimately delivered two normal babies who are now wonderful, successful adults. When I held my tiny daughter for the first time I realized with surprise that I would give my life for her without hesitation or thought, an impulse that has not faded to this day. I don't need to be lectured about unconditional love.
People on Kaposy’s side are fond of describing their vibrant child and implying that abortion is equivalent to ending his life. But when the decision to abort is made, we’re not talking about a 9-year-old boy. We’re talking about a fetus of around 12 weeks. The fetus has no personality, no opinion, no sense of humor, no emotion and no capacity for pain.
If Kaposy is making an ethical argument, as he claims, he needs to address the real decision, not this cheap and dishonest appeal that offers no understanding of the real alternatives young parents face.
29
When you apply only an abortion lens to this article you are missing the main point which is about true choices -regardless of abortion rights. True choices with accurate information about possibilities and a more diverse lens around measuring human worth. This author is simply stating his wishes and hopes that others will find his experience. Note the commonalities rather than the differences, lean into the reality of birthing children and parenting which all comes without guarantees, despite genetic testing and good income and good healthcare.
1
@Lisa Nicholson
Given that he set up a choice between having the child and terminating the pregnancy, it’s hard to ignore abortion. But if you think I applied only an abortion lens, you need to reread my comment.
I directly attacked his arguments, both the explicit and the subtext. He explicitly equates bringing a Down child to term with the capacity for acceptance, empathy and unconditional love, and implies that those who opt not to lack this capacity. This demands a response.
The hackneyed subtext is that to terminate the pregnancy attacks the legitimacy of his child's existence. This is based on a false comparison and also demands a response.
In this end this is just anti-abortion politics by another means. If you haven’t noticed, anti-abortion advocates have chosen this issue because the appeal to emotion is so easy to pull off. People buy the false comparison of a 12-week fetus and a 9-year old child without thinking. Not everyone is so gullible.
2
Think about it folks, here it is in black and white. They are trying to impose laws against aborting DS fetuses. And this is because 1) it will get ROE to SCOTUS more quickly, and 2) if states are allowed to ban abortion for one genetic defect or another, what sense does it make to allow any abortion at all. This is what they are up to. Please don't be fooled by, paraphrased, "I'm a pro-choice bioethicist who is so happy with my choice of having a DS child, that everyone else SHOULD make that choice. (SHOULD coming from the article.)
29
What's with all this "should" business?! It is a supremely powerful thing to decide who lives and dies. Enjoy your power over these defenseless things and do what you want.
7
Nobody enjoys it!
4
I am pretty shocked that a bioethicist would not engage the contrary point of view, namely that it is unethical to bring a child into the world who has developmental disabilities. Most couples only have a few children. When given the choice between having a healthy child, or having one with a disability, why would you choose to have the one with the disability? Isn't that just cruel? If you have no problem with abortion, wouldn't it be better to choose to raise the child who will not suffer the effects of a mental illness? I would have loved to see a rigorous refutation of that argument, instead of blissful ignorance of it.
18
Sounds a lot like China in re: to girl children?
2
Why is this piece in the Times? The decision to have or not have the child with Down Syndrome (or another lifelong serious health issue) is an intense personal, emotional, financial, and private one. It has nothing to do with ethics, and a bioethicist should realize that. Why would anyone presume to tell other people what they "should" do in this situation?
8
Because a child's life is at stake. It has everything to do with ethics.
1
As a parent of a 3 year old with Down Syndrome, thank you for this article.
7
Many younger people who have an abortion will later have other children in place of the aborted fetus. What of those lives? Those children born after an abortion would not be alive now if the mother had kept the earlier fetus. Just something to think about.
I have a disabled child who lives at home with us. I worry about what will happen with him when my wife and I are gone. Regardless, we would not have aborted him but I can understand fully why someone else may have made a different decision.
24
I cannot imagine a harder decision for would-be parents.
7
I found that last line in the article to be particularly offensive. "If you value acceptance, empathy and unconditional love, you, too, should welcome a child with Down syndrome into your life." Choosing to abort a fetus based on the results of genetic testing is a miserable, horrific experience. If you had gone that route you would understand how judgmental and mean your statement is. I am glad your family is happy and that you were able to make the decision you did. I am equally glad that I don't live in North Dakota, Ohio and the other states that impose an imperfect morality on all people. Telling a woman she is unethical to have an abortion in this situation is just as bad as telling a woman TO have one. I am trying to imagine the outcry if this opinion piece were written from an opposite perspective.
20
Bravo and best of luck with Aaron, Mr, Kaposy!!
4
If a person promotes right-to-life vigorously, there should be a monthly deduction from their paycheck to support these unwanted children.
8
I would never criticize someone's decision to have a child with Down Syndrome. I would never criticize someone's decision to not have a child with Down Syndrome. That's all. I won't even wade into this conversation. Whatever your feelings about this subject, don't expect that anyone else should feel the way you do. I respect your feelings, we should all respect everyone else's feelings.
10
A truly appalling number of posts supporting an even more broad sense of acceptance to abort for any number of reasons - disability, cost, perceived quality of life, etc - and an equally disturbing number of naïve posts about this being a simple issue of the woman's choice alone and not a larger discussion on who decides a life is worth living. Wake up people. I never thought I'd say it, but our society's growing comfort level with abortion, regardless of the reason, has actually put us on terrain much closer to the rationale China used to give for it's murderous "One Child" policy, which should be a greater cause for concern.
41
@! Rich - man commenting on how to control women , first, and second, don't congrat yourself for being a nyt pick - your idea of comparing to china one - child policy is patently absurd. In fact the opposite is true - most women bear their children, no matter what the cost, and our society with men like you in charge, chooses to see the LIFE of a living child as not important - how do you feel about early childhood education, help in birthing, family planning (contraceptives), leave from job for new baby, all the ways that are underfunded and fought against by foetus and women control lovers like you..
41
Women cannot be reduced to no more than a means to an end even if you happen to believe the ends are ‘good’. Uteruses belong to individual women not to governments, otherwise we are no better than broodmares
33
Yes! Next up: assisted suicide. Cant afford to support your elderly parents? You know what to do. Ugh.
4
Having a Down Syndrome child is a personal decision, and the states that have banned abortion for this particular disability are interfering with freedom in an anti-American manner. Those laws should be challenged and struck down.
You can't legislate empathy or a particular ethical stance. You can't demand that a single mother or a family without resources or an overburdened couple take on the major commitment of rearing a child with sometimes severe medical disabilities. Down Syndrome can result in hyperactivity, serious heart problems, and an array of side effects beyond what is usually discussed. It can wreck a marriage and impact siblings.
No, this is a personal decision. It is illegal to interfere with it. I do not favor abortion, but it must be an option in desperate cases.
15
In a modern society used to instant gratification,that demands as much control as possible over all aspects of life, and where materialism and free market ideals trump (sorry) the common good and social networks that support all, it is not surprising that there are so many sentiments in this comments section that intrinsically place a lower value on those that require additional care...it is worth reflecting that this is evidence of how modern life is eating away at some of our core humanity and threatens to continue to do so in future...
3
Dr. Kaposy's perspective omits a critical fact: their child will impose collateral costs on people who are not part of his decision. The affected parties will include social services providers and medical providers, funded with public (other people's) money. The most severe costs are placed on siblings of the disabled.
17
So it is with elders, what do you recommend there?
1
Absurd comparison. Elders are not dependent on public resources starting from the time they are born.
2
False equivalency. Most elders had a working life in which they accumulated savings, paid in to support systems, etc. They plan for and contribute to their own care. Many live self-sufficiently until at or near the end.
2
Maybe in Canada the choice to have a baby with Down's Syndrome is possible but in the U.S. this choice is not financially viable for many (most). Yet another reason why Universal Healthcare would make all the difference in everyday life.
8
Being we are dwelling in the anecdotal world; I worked as a weekend house manager for learning challenged adults for six months to supplement our income while we were raising small children and starting up our own business. One of the house members Danny was a 22 year old down syndrome man. Very high functioning and a joy and a challenge.
He was incredibly strong and lifted weights. I remember him running up the stairway chasing his girlfriend with me on his back. Another time he tried to bash my brains in but at the last minute decided to take out the wall next to me instead with the oak chair. Finally, one day when we took the group to the local county fair, I confiscated his new switchblade at the entrance. Fifteen years later Danny heard that my coworker (a friend still involved in the program) was going to meet up with me for dinner. Danny told him to be sure to "Ask Bill for my knife back..." Danny eventually wound up working and living on a Steiner based farm; happy and a responsible member of that community.
He was a joy a good sense of humor and I like him. His mother was a special needs teacher, so he had the best education a child could have under the circumstances. He found a place to live his adult years without familial help, but I think that is the exception to the rule.
Bringing any child into the world is a big decision and there are no guarantees. But a Down's Syndrome child will offer some different challenges. Good luck and may the blessings be...
7
I have a 5 year old with Down Syndrome. I found out much like Dr. Kaposy, with investigation of an incidental finding on ultrasound. I already knew and loved my baby at that point, and would not have considered not having him.
He is full of joy and makes people around him happy. His older sisters love to be around him. He is slower to learn pretty much everything than his same-age peers, but that's OK. He has enriched our lives in so many ways, and I think it's a wonderful experience for his sisters to have a sibling who is "different." (They agree.) He can't really talk much yet (but has basically taught himself sign by watching a Signing Time) , but he has many friends in pre-school, and is well-known by employees in local businesses, due to his friendly personality and the joy he exudes.
I would not change him if I could. He will learn and develop at his own pace (as we all do), and even though he'll never be a neurosurgeon or physicist, he is a valuable member of society, and a treasured member of our family.
3
Many parents with Down syndrome children struggle with their children's needs. Often the children are not capable (as is your son) of wanting to be a veterinarian or even of expressing joy or caring. Some are severely affected and create great stress for their families. Many parents find themselves having to face the need of their children for lifetime sheltered care, which may be beyond their means to provide. Not all families are happily and successfully middle class. And not all can afford - financially or emotionally -- the lifelong stresses and needs of a child who can never function independently.
22
I'm not a parent but I've had the privilege of knowing several children with Down's Syndrome. One family struggled for years to care for their DS child and after his parents died, the child was warehoused because none of his siblings wanted to take on his care.
By contrast, another friend has a DS child who is a competitive akido student and a really sweet kid. His siblings are supportive and fully invested in his care.
I would not criticize anyone in such a situation - either a parent who chooses to abort a DS fetus or one who chooses to raise that child and give him or her the best life possible. I only wish that, as in more enlightened countries like Canada, there was a better support structure to help.
9
Bringing up DS children so that they can not just survive but thrive and have some measure of independence requires lots of resources. Resources that in the US society is already reluctant to provide. I would argue that having a larger constituency of people affected by DS would make it harder to get services, not easier. Resentment at paying taxes is a phenomenon at every level of gov't, not just federal.
12
It's not only libertarians who don't want to pay taxes. In fact there's a liberal opinion piece in today's Times advocating not paying one's taxes. The tone is humorous and flippant, but it's always the most vulnerable who are hurt by that kind of thinking.
2
Throughout this article, this writer refers to having a baby, a child, children with Down Syndrome, which is his experience and which he thinks should be what a person would base a decision to abort or carry to term. This sweet baby or child that a parent in his or her prime of life is tending to is a very small part of the picture of a Down Syndrome person's life. The parent needs to consider that he or she will be responsible for this "child's" safety, support, and well being until one of them dies. If the parent is first there may be no one to take on the role of loving companion. The care for an adult person with Down Syndrome falls to the parent. This reality should shape a person's decision.
16
The comments regarding the needs of Down Syndrome adults have reminded me of my Aunt Cora.
She lived with my grandparents and her sister. When she was in her 60s, my grandparents died and her petite sister no longer able to care for her at home, Aunt Cora went to live in an expensive institution where she'd been in adult daycare for a number of years.
She hated it. Calm her whole life, she'd throw tantrums when family members, who visited daily, left. She'd cry and she was significantly depressed. After about a year, she passed away.
Not every family can offer sustained care to an older Down Syndrome relative. What happens to those whose families can't?
22
What happens to the family in the short- and mid-term is also a matter of concern. People with Down's may have medical issues that wreak havoc on a family and wear them down over the years, emotionally and financially. When our daughter was in the hospital with acute myelogenous leukemia, we met a little girl with Down Syndrome who also had AML, to which people with Down's are vulnerable. At 2 1/2, Sabrina had already had heart surgery--another vulnerability--and been hospitalized for other illnesses. Her parents loved her very much and, like us, endured the anguish of months of chemotherapy, dreading the effects of each treatment, fearful of every infection, not looking beyond the day but just getting through this one. Their suffering was in vain; Sabrina died of a massive infection. Our Nika survived and is now the mother of a 7-month-old daughter of her own. Both families might have faced crushing medical debt to be paid over many years, preventing us from building adequate funds for college and for our retirement, our lives blighted by year-in, year-out payments to entities continuing to profit by our catastrophe, all the worse for the family whose beloved daughter didn't go home. But we were in Germany, where health care is a right.
What passes for health care coverage in our country is an outrage, especially given that programs intended to help families in this situation are under attack. The "family values" party is morally unfit to govern.
18
Some relatives of mine have a Down's syndrome child. He is moderately competent. A few years from now he will be able to hold down a simple job. The following however stands out. He is incapable of malice.
My relatives are normal people with their good points and their faults. Some of them however are capable of malice. So when I visit, I always look forward to seeing the young man with Down's syndrome. When he greets me, it is always with a big smile and with absolute sincerity.
I am glad he is alive.
9
My position on this is pretty radical, but it is a well-reasoned one to which I have given a lot of thought.
I believe that to bring a child into the world knowing that this child will not be able to survive on his/her own faculties is a highly irresponsible decision. As parents, it is our job to protect our children while they are young and vulnerable, and in the normal course of things they become less vulnerable as they grow and our job is slowly obviated. In the case of a child with Down Syndrome, it is impossible for a parent to take responsibility for the child for a lifetime, and unfair to pass that responsibility to a sibling who may not have a say in the matter.
I believe the author has great love for his child, but I believe that there is also an element of willful ignorance. The ability to protect oneself from harm or threat is necessary.
26
He is also negligent, as a bioethicist, not to address the important concerns you've raised.
9
The personal decision to carry any conceptus to term is up to the parent(s). Government should have no say in the matter, nor should government be expected to pay for termination of the pregnancy. Government support for the child and their family is already in place, but there will be those who complain about the cost.
3
I think it’s a common misconception that government support really is in place. Maybe some states are better than others. I have two family members with intellectual disabilities and it’s been a HUGE fight to get minimal services - definitely nothing that gives them a high quality of life. Just want to clear that up.
12
Please note that half of all people with Down Syndrome develop Alzheimer’s disease. For many the symptoms become apparent in their 50s. Just another consideration as you plan for their care.
24
Assuming that it's ethical to have a child at all (not a universal view) and that both parents consent without pressure, it is indeed ethical to have a child with Down Syndrome. But is it more ethical than aborting it (given the personal value set you state at the end)? No. Otherwise you could as well argue that ANY abortion is ethically compromised (again, given your stated set of values).
You can argue that any child will experience suffering after birth. The pro-choice view is that the decision to abort or not is ethically neutral (at least in earlier stages). Your stated view, however, is that giving birth is ethically superior because you confuse this with "acceptance to the family". Every born child deserves acceptance, but that's not really the question, is it?
10
The headline is misleading because it assumes that bearing such a child could be unethical. Surely that cannot be true. A decision to bear this child will presumably result in additional demands on public resources. However, that does not in any way create an ethical challenge for those choosing to bear a Down's Syndrome child.
Down's Syndrome children require care throughout their entire lives, including after their parents pass away or are no longer able to care for them. With some exceptions, they are unfortunately quite prone to other illnesses and often develop Alzheimer's when they reach their 50s. If a parent does not have the resources to care for the child properly, it could be argued that bringing such a child into the world is unethical. God knows the foster system can't properly deal with special-needs kids, especially when they age out of foster care. It is a lot more nuanced than it seems, and it is true that, if the pre-born is bound to endure lifelong suffering if not terminated, the ethics of termination could be debated.
8
Perhaps it can be considered unethical to have the child if you are unable to care for it and its birth will destroy your marriage, family and the futures of the children you already have.
6
Nothing in the US safety net makes having a child with special needs of any kind possible without financial resources beyond the median family income or wealth. Including a child with Down syndrome in one's family is limited to those families whose jobs will always provide health care, stable housing and schools which have the resources to educate special needs children (Apparently leaves out schools in Kansas, Oklahoma, Kentucky and all the other "Red" states which have determined tax cuts for the wealthy are more important that educating children.
Try fitting any special needs child into the family life of a single parent who must work 2 or 3 minimum wage jobs which do not come with health care benefits.
Try thinking of retirement with a special needs child or planning for that child after parents die.
We as individuals value acceptance, empathy and unconditional love, the government of the US under Republican presidents and Republican Houses and Senates nationally and in states do not value the lives of any child, much less those who cost extra money. Look at Kansas. Look at Mississippi. Look at Oklahoma. Look at Louisiana. Look at Wisconsin.
15
Congrats to you on the birth of your son Aaron. May he continue to thrive. And congratulations to you for having the strength and resources to care for Aaron. I'm sure he has the best that we could wish for any child.
But deciding that you don't have the strength or the resources to do right by children with Downs Syndrome is not unethical. It could be the compassionate choice in many circumstances.
24
I was able to be the legal guardian of an adult sister with multiple physical disabilities and an unmeasurably low I.Q. As a young child they gave her an I.Q. rating of 20 " because we don't have a way to justify a 0." Her life was not easy and she did outlive both parents. But before she outlived them their health in both cases had deteriorated to the point that they could not care for her. My sisters and I were very lucky to find a group home in which she did well for the next 15 years before her death at 52. Much of the potential "burden " on us was thus relieved. But these situations are generally tragic and exhausting for decades. Other siblings are often neglected. Family life revolves around the needs and crises of the disabled person. Even in a state with good , basic social services it is still expensive. Texas is actually good. The family lawyer said at the outset, as we considered our options: " Whatever you do don't take her anywhere beyond the Texas border." But the pain is enormous-for the severely disabled person who comprehends little and has limited joy in living, and for the family whose functioning is severely impacted-a vacation anywhere is a huge logistical undertaking and there are lots of stares...She was destructive, and while not mean, anxiety made her highly and effectively aggressive. She had very loving caretakers, patient and kind. But I am glad that there is a choice now not to walk this path if you have early warning.
35
Thank you for this column about having a child with Down's Syndrome. I understand how hard it can be. I, like you am Pro-Choice and believe that every woman must make their own choice.
The problem here in the United States is that in too many States getting a legal abortion is very difficult. Worse yet, our treatment of children after they are born is not always good. In too many States health care and other services are difficult to get.
Unlike Canada with a good, affordable health care system, this is a decision that couples have to make according to their finances.
9
Parenting is a life long commitment. We have no guarantee what our children will be like, what diseases/mental illnesses will manifest as they grow; what life experience they will endure or how long we as parents will live and be able to provide for them. It takes a village to raise children and we in society should all step up to that responsibility.
3
We should and frankly our society does quite a bit, in some states more than in others. But in many places, the fact is, we don't do enough and parents are left to bear the cross alone.
4
My PhD is in Exceptional Children. I worked with kids with Down syndrome and other cognitive challenges for years. When my two best friends told me they were going to have a Down syndrome baby and were deciding on whether to abort or have the baby, I told them that a Down syndrome child will be your happiest child and will bring immeasurable joy to your lives. I said that these special humans are the most unconditionally loving people I have ever experienced, even through adulthood. I referred to them my "sunshine souls". My friends, after considering what I had to say, decided to have their baby. It is now 18 years later and this happy amazing boy is the light of their lives. They can't imagine what their lives would have been without him and would urge anyone with the opportunity to raise a Down syndrome to grab it. They said their biggest surprise was to realize that their son is their teacher on how to live joyfully in the moment, and that his innate pure love has taught them more about loving than any religion.
7
" in other words, that they will not meet the conventional expectations for the perfect middle-class life".
This is a very disrespectful and condescending interpretation of people's concerns for their children's futures.
22
What is the ethical case for bringing ANY child into the world? I'm not sure we have a leg to stand on there.
What I am certain of is the ethical case for treating all children who are already in the world as kindly as we can, and helping each one to reach their highest potential.
12
"...after parenting Aaron through difficulties and joys and seeing the curiosity and delight he brings to our lives, I wonder why more people do not choose to bring children like him into the world.". Because, what you are describing is basically a human pet.
24
I try to avoid people who insist on telling me, repeatedly, (although not even asked) how happy they are with religion, marriage, parental choices, etc. And here, to the point of advising all the readers of this article....wondering why everyone else is not as happy as they are. Reminds me of when the evangelicals show up at my gate with their literature.
9
No mention of the attitude of medical professionals who inform and advise a couple. With 2/3 of women carrying a Down’s baby choosing to terminate, abortion has become the expected norm among many health providers. I have seen physicians, who should be caregivers to their patients, act like malpractice attorneys when describing risk of possible Down’s or encephaly - delivering difficult news over the phone to a pregnant woman alone at work, pushing for final decisions within 48 hours, and offering statistics that are confusing and misunderstood by a stressed patient. This is CYA, not health care. I know three such women who now have healthy daughters, and one who lost what turned out to be a healthy fetus to amnioscentesis. Especially when the final diagnosis is difficult, doctors should take the time to be supportive caregivers of their patients.
4
A deeply personal decision. Aaron looks like a beautiful young baby though! I am glad that you made the choice that works best for your situation. In my view, it is all about choice, particularly that of the woman.
7
I don't know what is so wonderful about having a child with Downs Syndrome except it is to me the most extreme form of selfishness. Having the ability to detect congenital diseases brings with it the responsibility to act once detected.
18
This is an interesting and thoughtful piece, but has little to do with ethics.
24
The case for compassionately investing in committing to raising a child who is Idiosyncratic in any way Is made marvelously by Andrew Solomon and his immensely insightful book, “Far From The Tree”.
Parents who chose to do so testify convincingly on how that choice changed their lives for the better forever.
Congratulations on your beautiful son, Chris Kaposy. Thank you for bringing up "conventional expectations" as a factor in why people expect having kids to be part of a successful life experience. I would like to stress that the proliferation of scripted media messages introduced by radio/TV has drilled into too many minds irrational beliefs about their own future happiness & that of their 'future kids.' In fact, life is hard. Any child might grow up to face despair, loneliness, broken relationships, serious illness. The postcard-pretty image of married life is not true for 97% or more of humans. Ergo, there is no reason to reject a child because of Down's... or autism. A 'special' child also brings joy & meaning to the family unit, sometimes more so than an 'average' child. Look around you: lots of people had a baby who later got cancer, was maimed, developed drug addiction or otherwise confronted serious, life-altering traumas... In the abstract, many harried parents think, "Why exactly did I sign up for this role?" But in all sincerity the vast majority of parents love their kids & will stick up for them through thick & thin. A child with Down's won't win the Nobel, but s/he probably will not become a drug user, gambler, thief, batterer or bully, either. Take a deep breath & think carefully before you conceive any life at all. What you see on TV is not real. What you see around you is. Before you become parents, consider all implications. After you become parents, just Love
7
Does a Down Syndome fetus—stipulating that it never will achieve the consciousness/cognition higher than a three-year-old’s—deserve more consideration than the fetus of a chimpanzee? Why or why not?
I would have preferred that a bioethicist address these two questions rather than discussing the issue from a personal or anecdotal perspective.
I would also like to see so-called Christian ethicists address those two questions too. . . I won’t hold my breath.
8
Thanks for this different voice.
2
The main person I've had to accept and accommodate is me. The main obstacle in achieving that has been me. Desires, apprehensions and unforeseen events conflict and combine to produce anxiety, confusion and grief. Like a boil, it festers beyond the capacity of determined denial to ignore it. Typically, it erupts at 3 am, that dark and lonely hour.
One such sleepless morning, overwhelmed by our infant daughter's diagnosis of multiple developmental disabilities, despair blew up in anger. I confronted God:
(me): "You are in control so you have a lot to answer for!"
God replied: "Ask your question."
(me): "How , why would you give us a child with these afflictions?"
God replied: "I did not give her to you. I gave you to her."
Suddenly: * CLICK * ... and the Light came on.
(me): "OK, but we're going to need help!"
God replied: "It's good that you know that. Be not afraid - you need only ask."
And that is exactly how it has worked for over 40 years. My wife died a few years back, at peace knowing our daughter is the happiest, most contented person in our family and secure in a wonderful group home that will provide for her after we're gone.
My wife's last loving words: "Grief and sorrow are a void in your spirit. Let that be brief. Fill the void at the fountain of gratitude you will find within... when you ask."
5
And how are the workers in that group home compensated? Do they have good pensions, good healthcare benefits?
9
We are in Memphis - the sixth most economically distressed metro in the U.S. and the poorest in Tennessee. So, sad to say, financial compensation for staff is NOT commensurate with their exemplary performance in caring for their clients. In 25 years of close involvement I have realized that their dedication is driven by a very unique sense of spiritual imperative. Remarkably, in annual surveys by an independent study group, the Staff at this facility consistently rate it in the top 15 best places to work in the entire Mid-South.
Wonderful for you. Now let others make their choice
without government interference.
20
Note something, that the author is a college professor which means that he likely has a good benefits package and living in Canada has national health. He is talking from his own experience in a country that is not the US, Canada so far has been able to beat back the right wing, Ayn Rand driven mentality that society owes people nothing.
More importantly, an ethicist is supposed to take into account any number of things, for example a trial of a drug on human beings has to balance out the potential risks to the subject with the benefits it will bring to others, among other things it forbids experimenting on someone without their consent. Josef Mengele's "experiments" were unethical because there was no consent, when it comes to a Down's syndrome baby the parents make decisions based on their own unique circumstances and an ethicist should not be, as this author did,project their own situation on others. Ethics takes into account outcomes on other people as well, to state that carrying a Down's syndrome or other child to term is the only ethical position is both arrogant and wrong; the parents who choose not to have a baby with Down's or Tay-Sachs disease or other genetic diseases agonize over it, this isn't Donald Trump, this is real world, about things like how to get help to allow the child to function in the world and how to make sure after they are gone the child will be okay. In a world where such things are often not available to people, the ethics are not clear
8
There are a number of comments below that put it in perspective. If you already have a child, this is a terrible burden to impose on him or her for the rest of their lives. And they had no choice in the matter.
16
Having a Canadian make this argument is embarrassing. Seriously, who is going to assume the care and support of a person with Downs when they reach adulthood? Maybe in Europe, Canada, or some other progressive place this conversation makes sense. Here in the US we only care about the fetus. Life afterwards? Not so much.
24
Perhaps Dr. Kaposy should a few years before he starts publishing essays on parenting a child any kind of child. Advice from the parent of a 9 year old is a bit like a 16 year old authoring a guide on driving
15
If Down Syndrome is something we are trying to prevent than it makes no sense to subject a person to that if there is a choice. Do people who proceed with such a birth feel somehow subconsciously obligated not to abort. Why would anyone want to bring someone into this world who could not take care of themselves.Do they need someone who is dependent on them for care to make themselves feel fulfilled. This is not to say the someone with Down Syndrome can not be happy or make others happy and of course once someone with Down Syndrome is born they should be taken should be taken care.
7
The fact that one must present an ethical case for not killing ones child is completely bizarre. Perhaps we need to codify this language, that way poor people who will raise poor problematic people will have to come up with a financial plan so that their kids will not be a monetary or social burden. Sounds sick doesn't it?
2
Excellent point. Slippery slope indeed!
Only if you conflate terminating a pregnancy with “killing a child.”
4
The hardships of raising and providing for individuals with special needs is real whether or not you choose to believe it. The fears of parents for their childrens’ future after their own deaths is real.
How do you react when you meet a group of special needs children, teens, or adults on an outing at the local mall, grocery store, or a theme park? Do you engage with a smile and say hello? Or, do you avoid contact?
I’ve often accompanied special needs individuals on outings. I’ve witnessed a variety of behavior by those we encountered ranging from cordial to outright hostile. People pointing and staring, making “whispered” remarks meant to be overheard. Complaints they’re taking up a space on a ride a “normal” child would appreciate. I heard a lot more than I care to record. It’s hurtful to them. They don’t understand why they’re accepted at home, or camp, or their school but rejected by the public. They wonder what’s wrong with them. It’s difficult to explain why some people are so mean-spirited. It’s heartbreaking to watch their fun outing go sour because of just one mean hateful remark.
Until you’ve walked a mile in the shoes of special needs children, teen, adults, and their parents don’t tell them how to order their lives. Until you get out there and volunteer or work with special needs people don’t pretend you understand what their life is like. Until I or you have a special needs child we don’t get to decide for those who do.
11
Living in Canada makes a huge difference. In Canada, you will get the support you need to raise a child with Down Syndrome. In the US, the states that are attempting to ban abortion for Down Syndrome have yet to allocate any funds for the necessary health care and educational supports that these children need. That is not to say that the lives of these children do not have value - but that Canada goes a lot further in valuing their actual lives rather than their existence as metaphorical grandstanding material for moralistic "punishment" of parents.
210
I have a 5 year old with Down Syndrome, in Colorado. We discovered it similarly to the family in the article; pre-natally, and had our concerns. We didn't know about services we would receive, but in this state, Early Intervention is marvelous. They set us up with services before our child was even born, and he had free, in-home speech and PT until age 3. After that, he was able to get some of those services in preschool, with a tuition waiver.
Some states are better than others in the US, for kids with special needs. I think it's actually easier for us, whose child has the DS diagnosis, than for parents of children who have some harder-to-identify disability or difference.
16
I am an early intervention provider having worked as an special educator and occupational therapist in early intervention for a combined total of 24 years. While the system is very far from perfect, children who are identified as having special needs are provided with educational and related services from birth to 21 years of age. To state that the in the US we "have yet to allocate any funds for the necessary health care and educational supports that these children need," is grossly inaccurate and misinformed. I spent much of my career at an academic medical center which provided not only early intervention services, but specialty pediatric care to infants and children with developmental disabilities. While I am very sure that Canada provides many wonderful services to infants and children with special needs, I am not sure that I am hearing any hard evidence that they care more or are providing a better quality of services.
1
Multi You are so right. It is a big concern for most parents with Down's Syndrome or any other problem.
2
Having shared almost 43 years with my young man with Down Syndrome, I can't support your decision strongly enough. I also have three typical daughters, and while the ups and downs of relationships with each of my children have at times been stressful, the rewards of the time and effort devoted to Walker have been the most amazing of all. Walker has held a job at a grocery since he was in his early twenties. He is a loyal and valued employee (he was their very first "associate of the year") and for the past several years has re-entered the academic world at the University of Memphis, becoming a lifelong learner! He has an adorable girlfriend and a number of closer friendships, and his religious faith is an amazing thing to watch in action. He has bolstered mine immensely! I wouldn't trade my time on earth with him for anything!
6
Most of the comments I have read about this piece either point out the difference between the healthcare situations in the US and Canada or castigate the author for telling other people what to do. Because I hadn't gotten the same feeling about the author as the castigators, I went back and reread the piece. I think that the one mistake--and it is a bad one--that Mr. Kaposy makes is using the word "should" in the last sentence. By using this judgmental word, he does rather undercut his pro-choice stance and cast aspersions on people who "value acceptance, empathy and unconditional love," but who make a different choice.
12
Some couples might choose to abort a fetus with Down syndrome because they are worried about their child's life after their own deaths. I have often seen older parents (usually mothers) with their middle-aged but still dependent children, and I never fail to think about this. What will happen to them?
187
This is the question. I actually saw this unfortunate situation come about and it is still painful for all concerned. Also, why does the author of this article feel he/she needs to sell this idea? It is very personal and each person must make their own decisions.
19
This dad's perspective is a lot like one of our neighbor's, who have a wonderful son who's now in his 20s. He is a good conversationalist, he's very kind, he holds an entry-level job that he travels to on his own, he exercises-walking for miles with his dog. He is responsible, energetic, and interested in learning. I'd also like to add that not only does this young man bring intensive learning about compassion to his own family, other children in our neighborhood have benefited from talking and walking with him, and understanding that people come in all different shapes, sizes, and capabilities - and that's all part of the rich fabric of human nature.
HOWEVER, that family has excellent health insurance, the father has a high income so that the mother can stay home and they can arrange physical care and oversight for their son after they pass on. Both parents are also wonderfully patient and kind people.
Because of financial inequities and personal limitations, while the body of this op-ed piece is a welcome slice of life that educates readers, the closing paragraph, telling readers what they "should" do, is completely unacceptable.
19
The decision to carry a Down's pregnancy to term affects more than the immediate family. As a society, we have a duty to care for those who have physical or mental limitations. Some would argue that a disproportionate share of societal resources go to supporting these individuals. On the day of my own Down syndrome termination, as I stood crying in the doorway, a nurse came up to me in preop and said she had been waiting for me. She sat next to me and said that her brother had Down Syndrome and had a very happy life but it had destroyed her parents' marriage and negatively affected her life. Then the anesthesiologist came to see me. He told me that in his last year of medical school his wife gave birth to a severely mentally and physically disabled baby who had been in an institution for the past 20 years. He said, "many times I have wished I had the choice you do." That was a terribly sad day for me but I have never regretted my choice or that I had one and will always be grateful to those who gave me comfort. Instead of advocating for people to make the choice you did, it would be better to advocate for having a choice. Not everyone has the financial or psychological resources to make the choice you did.
45
Thank you for sharing your story. It’s heartbreaking you had to make such a choice. I’m glad you found peace within yourself, and support from the medical staff who cared for you. You are right that it is an individual’s decision to make.
10
The case against it is simple.
Our children not only spread our gene pools, they spread our personalities. Personalities are cultures writ small.
Parents live for and through their children--pleased by their pleasures, progress and successes pained by their pains, setbacks, and failures. So parents lives (bio and social lives) spread--they get extended "selves".
But parenting is essentially nurturing and educating. That's the core problem with anti-abortion--so called "pro-life": it's only pro bio-life; it's not pro social life--for either child or parents.
Kids (pre-teens even) can conceive; forced labor and parenting can ruin the social lives of parents and children. Even many adults are ill prepared to nourish and educate. Thus compulsory schooling--only a century old in many states.
Ill prepared to educate even normal children; many more are less prepared to nurture and educate those with special needs.
So ill prepared to cope--yes cope--with the disappointments of diminished life prospects for child and parent-child relations--for living for and through a diminished extended self. They'd do a disservice to themselves and their child.
It's much worse than pets you are unprepared for. The Easter bunny, the puppy and the backyard pony are cute--but do you know anything about ponies?
Children are like pets in some ways; unlike them in many others. That the author copes with and enjoys his DS extended self is no reason for you to have one.
10
Thank you for writing this article. I have a daughter who was born with dwarfism. I know that many people would not want a daughter with dwarfism and would abort such a fetus if they could. In fact, a few months after my daughter was diagnosed, a friend who is a genetic counselor emailed me to let me know that prenatal testing is now available to screen for the type of dwarfism my daughter has. The friend suggested that we do this screening for our second child "just to be safe." Ouch! Even though my daughter's life will be different, and harder, than most people's, I hate thinking about having found out prenatally about her dwarfism and making the choice to abort her. She may be different, but that doesn't stop her from being sweet, adorable, funny, independent, smart, silly, and often manipulative. I love her.
Anyway, I'm glad that people are thinking about the other side of these issues. Sometimes it upsets me when people say that all they care about is that their children are healthy. Sometimes kids are not traditionally "healthy," but they're still great and deserving of the same love, hopes, and dreams as others. It's really not the end of the world to be a parent to a different kind of kid.
2
Your daughter sounds lovely. I hope she’s also happy.
2
It was unprofessional for your friend to tell you what to do.
I wish you and your daughter a wonderful happy future.
1
I've read several articles like this recently and wonder if the authors have ever encountered a DS child who was severely physically and mentally disabled. Most first-hand accounts describe children who are able to be mainstreamed in school, who are healthy and happy and able to participate in a range of activities and even hold jobs. From birth, my son was constantly in and out of emergency rooms with respiratory problems that were treated but never cured. He barely learned to walk, could not talk and had ongoing eating problems. We were lucky that my husband was in the Navy and we had access to healthcare -- I can't imagine how families without those resources cope. I'm happy for parents who have a different experience with Down Syndrome, but it was nearly unbearable to watch my sweet child suffer so dreadfully from illness day in and day out for the five years of his life. I think it would be compassionate to realize that not all parents have the optimal conditions described in this article and not all DS children are healthy, high achievers. My heart goes out to those who struggle in heartbreaking situations--the last thing they need is to be shamed.
42
I have a brother with Down syndrome, who is now in his adulthood. While I would never presume to tell anyone what their decision in this situation should be, I’ve noticed that there may be a self-selection phenomena with parents relating their experiences with Down syndrome, skewing toward the higher functioning end. A decision should be made with a full consideration of the full range of potential outcomes. My brother (who I love dearly) has never learned to read or speak, cannot form meaningful relationships outside of family and will never be employed. He will never leave home. The employment and travel of my parents has been moreover curtailed.
The issue of his care after my parents are no longer able is also not a trivial matter, as he will require daily aupport for many decades more.
42
There are some people who could not even consider aborting a child with Down Syndrome and feel all life is a gift. There is not the stigma of having a child with special needs today as there was years ago. Those with DS can become productive members of society and can even go to college and graduate. I think some people underestimate the abilities and talents of these human beings.
You never know how your "normal" children will turn out later on in life. Not all are successful and some are even a disappointment. They turn to drugs and do not always lead an exemplary way of life. I have known successful professionals whose children have not lived up to their potential. They were given many opportunities but did not take them.
Down syndrome children can teach us all kindness, patience, perseverance and gratitude. Just ask those parents who have lived with a DS child. They are definitely not a waste to our society. Some are more productive than healthy children.
1
No one has mentioned Down Syndrome being a “stigma.”
No one should have children to fulfill some need or void within themselves. It’s not your child’s responsibility to teach you anything about life. It is the responsibility of parents to give to their children, to teach their children, to provide for and protect their children. If a woman/couple decide they can’t do that it is her/their decision to have/not have a child for any reason or no reason.
There are many children with and without special needs that are unwanted, unloved, tolerated, neglected, and abused because a woman or couple was pressured into taking a pregnancy to term.
3
BMUSNSOIL,
Many years ago there was a stigma associated with children with special needs. I vividly remember overhearing people ridiculing a child who was not "well." Of course, these were very ignorant people but we have come a long way since those days. People are a lot kinder at least most people.
I strongly disagree with your comment about children not teaching parents and others about life's lessons. Obviously you do not have children or you would not make such a false statement. Children teach us patience and kindness and many other things. Those of us who have children love them unconditionally and they have brought joy and meaning into our lives. It happens naturally. You are right not everyone should have children and I would say you are one of those people.
There are also many children in today's world who are wanted, loved, and a delight to their parents and they feel the same way about the parents in which they were blessed to have been given. I am fortunate to have been one of those children. And I think my children would say we were both blessed to have been given to each other. You do not know true love until you have a child.
WPLMMT,
I did not say a child - won’t - teach you...
I said it is not the child’s - responsibility - to teach you or - fill a void - within you. If those are the reasons someone chooses to have a child I feel very sorry for that child. They may never be able to live up to parental expectations.
True, I don’t have children. Why is none of your business, but make any assumption that fits your narrative.
I did spend a lot of time volunteering, working as a child care aide, and as a nurse with special needs children. I know full well how many are treated by some parents and some members of the public. I’ve witnessed the burden placed on the parents and siblings. I witnessed them make extraordinarily difficult decisions. It eventually took a toil on me and I moved to another field in nursing. Parents of special needs children don’t have that luxury.
Not all children born have rosy futures. That is often especially true for special needs children. The decision to have or not have a child, any child, rests with the woman or couple if she chooses to include him.
The “you don’t know true love until you have a child” is rather cliched. You didn’t say it, but experience tells me what you mean is I won’t know true love until I’m loved by a child. Again, this shifts responsibility for need fulfillment from the parent to the child.
I won’t speculate on what type of parent you were, though you felt free to comment on my suitability. That evaluation is your child(ren) to make.
4
After years of infertility and finally giving up, my husband and I conceived twins the old-fashioned way. I was overjoyed and terrified simultaneously. When it came time for genetic counseling and amniocentesis (this was years ago, so no simple blood tests), we made the decision not to have amnio. I wanted this pregnancy and these children no matter what and the tiny risk of losing the pregnancy because of the procedure was greater than I was willing to take. Additionally, though I am pro-choice, I think I did not want to be presented with the choice should it arrive. Was that an ethical thing to do based in the values of acceptance, empathy and unconditional love, or was it part of my selfish desire to bear and raise children? I will never really know. My guess it was more the latter than the former and so while I think this is a discussion we should be having and Dr. Kaposy's contribution vital, I want to make sure that we address all the complications inherent in bioethical decisions including that we can never really fully know our own motivations let alone those of someone else.
8
Saying :My child is ok, so you must have a child like him: is like saying "I won the lottery so you must play it too." But some of us look at the odds and say that the chance of winning is too low and therefore I don't choose to play. Should we be forced to give our lives and our fortunes over to others?
23
"For better or worse" applies to your spouse and to your children. I was born with serious genetic illness and suffered enormously (were I given appropriate painkillers, I'd have become an addict in short order). Because of this massive struggle, I enjoy life more than others without similar obstacles. Chatting with friends who are also disabled, we can't help but notice how predisposed people who haven't had similar difficulties are to complaining. "Positive attitude" gets a bad reputation, but because I was so goal oriented and yes, had the right attitude, I really did well for myself despite stopping attending school regularly when I was 12. People who identify as "compassionate" are usually not. No one who would categorically abort their infant because of an illness deserves the title, "parent." I've personally seen "normal" kids grow up to give their parents infinitely more grief their disabled kids do.
4
There are no ethical considerations here. In a pro-choice society, parents can chose not to continue a pregnancy for any reason. We cannot as a pro-choice society push our own personal values and judgements onto other's choices.
24
This was a moving editorial. My uncle had Down syndrome and, although he died when I was fairly young, I remember him being one of the sweetest people I have ever had the pleasure of knowing. My grandfather, widowed when all three of his boys had yet to reach their teens, worked very hard to provide for his family and especially for his youngest, the uncle I refer to.
I certainly appreciate the author's take on this. But I caution the last line; plenty of people value acceptance, empathy, and unconditional love. Many, I'm sure, wish they could welcome such a child into their lives. But we cannot forget that some - far too many - parents lack the means to adequately care for an individual with Down syndrome. That doesn't make them any less empathetic, accepting, or loving.
10
Sadly, this decision has far more severe financial impact possibilities in the US than in Canada. The reality of heart and other physical abnormalities that require treatment for Down's Syndrome kids is not nearly as much of an issue when one is part of the Canadian health care than if you are playing the roulette game that is the US health care system. This shouldn't be part of the decision equation, but in reality, it is.
11
Our first baby had Down Syndrome and a heart defect common to individuals with Down Syndrome (one serious health concern among several shared by people with Trisomy 21). We were shocked when he was born with Down Syndrome (were not aware until the birth), loved him desperately during his short life, and missed him terribly when he died after heart surgery and 3 weeks in intensive care nine months later. I look back on the entire year after his death and realize now that I was in a haze of grief. I still think about him often and miss him now 30 years later.
We chose to have prenatal testing for our second pregnancy and would not have chosen to carry another baby with Down Syndrome to term. That some states are trying to ban abortion for such pregnancies is horrifying.
I am glad that some people (the ones who are aware before the birth) choose to have children with Down Syndrome. I believe that those folks should receive all of the help they can from the rest of us to provide care, respite, and support for their children to lead happy and productive lives.
Children with Down Syndrome are just like any others - they may have serious health problems or behavioral problems, but there is no certainty that raising ANY child will be smooth sailing and free of challenges. Having children is a gamble, but worth the risk, in my opinion!
18
It seems quite clear that there are good arguments to have or not to have.
What I wish were more clear is that no one should have the right to impose such a decision on someone else.
24
In my professional experience couples decide to abort Down Syndrome babies because they don’t have the resources to care for them plus the children they already have. I remember a couple, both agricultural workers, raising 3 children. The oldest was an accomplished musician and writer. The other two also were brilliant students. All the efforts those parents made were to send those kids to college so they wouldn’t work in the fields. As the father put it “the future of the three already here is much more important.” Their small community still offers no resources for disabled children. If you’re proposing parents have these babies create the conditions for them to thrive first. It’s cruel to demand they are born and then immediately abandon them afterwards with parents without the financial resources to pay for medical care, therapies and special education they need and deserve.
29
This was an excellent essay on a very important issue. One of my friends recently had to make this difficult decision and opted to keep his child who has Down syndrome. It was very difficult for me to understand his decision since I grew up in a household where kids were judged on achievements. I respect my friends’ opinion but if I were ever in my friends shoes I would discuss the option of abortion with my significant other. Children with Down syndrome are extremely likely to have significant health issues other then developmental disabilities. It doesn’t make sense to have a child who is almost guaranteed to suffer physically. Absent the health issues, I concur with the author.
5
An associate professor at a prestigious university, probably has sufficient resources to take on this challenge, including the possibility of a lifetime of hardship. The question becomes, what is a family of lesser means to do? Especially with the safety net being perpetually fragile due to the ballooning deficit of our recent tax bill.
14
It's far easier to raise a child with disabilities than to take care of an adult with disabilities. Many families decide they would rather not give their cognitively normal children a life-long responsibility for a sibling who cannot care for themselves without help and support, and I understand that.
I'd be interested in how Aaron's siblings feel about their parents knowingly bringing a DS child into this world, and also in how well Aaron's situation will play out, 25 years from now.
22
Having a child, (even a genetically normal one,) at all is a major decision, and to do so responsibly requires thorough consideration of all factors. Trivializing the weight of the myriad factors that should affect the decision to have a child, especially one with special needs, down to "if you value acceptance..." ignores the very real life circumstances the majority of people face in this country.
8
I understand that this is an extremely personal and emotional choice.
However, I've seen how a child with severe Downs Syndrome can make life almost unbearable for a family. Some children are better able to function than others. For families unlucky enough to have a child with profound disabilities it is devastating. Especially if that family is not financially well off and can't afford to hire help.
Besides the emotional and financial toll on the family that raises a severely disabled child, there is the heartbreaking consideration of what happens to the adult forever-child when the parents die?
I find it unconscionable that some states have taken the choice of abortion away from couples. Are these states going to subsidize the costly care? Are they going to guarantee comfortable and humane housing and living conditions for Downs people after their parents have died? No. More likely these states are looking to cut Medicaid and the social safety net.
24
I have two cousins that were born with Down’s syndrome. There parents loved and cared for them and they grew to be loving and productive members of our community. The extended family loved and cherished them. Many of the comments appear to come from people who would understand that Down syndrome children are human and deserving of our respect, love, and affection.
1
Are there any statistics on the amount of people with Downs Syndrome who are adopted? At any age? That may indicate the acceptance of people with disabilities.
Right now it is government mandated. They have civil rights. For people with disabilities it is the right to education and not a mental hospital. However in the United States we all know the disconnect between reality and civil rights law with people with NO disabilities (like for the color of their skin, their religion etc). Why is this framed as a pro-choice or pro-birth argument? That's what it is although no one is saying so. Totally intrusive on the family.
Harsh reality it is. Why this disconnect is now thrust on families is mind boggling. When people argue about the cost of caring for a child with disabilities it begs the question as to why any non-white family in the United States would bring a child into this world at all, disability or not.
These decisions are for the family. As the definition of family changes to include LGBTQ, & the belated (if not complete) realization in this country that non-white families love their children as much as anyone else, an argument for controlling family decisions seems to get new energy.
I also have seen a family fall apart because a child was brought into this world with significant disabilities. Like two days after her birth. This is a family decision that needs to be made with all family who may be involved in the well being of the family, not some out dated dogma.
4
There is on important difference between having a Down Syndrome child in Canada and having one in the U.S. You have government provided healthcare in Canada. In the U.S. parents have to bear enormous financial burdens - healthcare, education and childcare. For many - it is simply not an option.
13
The prenatal tests are there for good reasons. For a family with very limited resources, or a family in a society where people with disability virtually receive no help or support, it would be unethical to suggest them to keep the Down Syndrome babies.
15
This writer is from Canada where this child and eventual adult will be able to receive a lifetime of care through the programs in Canada. The situation is very different here in the US. I have been involved in the care of Downs kids and adults and it is an incredibly demanding and financially/emotionally exhausting experience here. Often raising the child on their own, not all fathers can accept the situation, mothers struggle with the time and money and health demands of a Downs child. It is difficult to balance with the demands of a job. And then the fear of aging and leaving the child alone - sadly many people who find Downs children loving no longer feel the same about Downs adults for a host of reasons. It’s complicated and it concerns me that this is being built into the abortion debate. It is sadly not that simple. If we want people to be responsible we have to let them make the decision that works for their situation.
13
Well said, Susan. I rarely, if ever, see letters extolling the joys of having a DS child from parents or family members of DS teens or adults. I remember, at age 12, being terrified of the teenage son of my sister's in-laws. He was very sexually aware and essentially assaulted me every time I was in a room alone with him. He even tried it when others were around but of course they stopped him. Once he was an adult, living in a state and a town where there were no services available for him, his care contributed, I'm sure, to his parents' early death. By that time my sister had long lost touch with the family so I don't know what happened to him when they died, but I suspect he was placed in a low quality nursing home at public expense.
18
I grew up with a special sister and I have a special son. One needs to weight the impacts on family/siblings and themselves knowing that the priority will always be the special sibling/son/daughter. Yes, there is a special flavor to life, but you’ll be sacrificing other flavors for yourselves and your other children.
18
This was a very interesting article and something I would have written myself having first hand knowledge of a devastating pre-natal diagnosis. I too am pro-choice, however, my moral compass (and only mine) makes me feel sadden by the loss of children due to disabilities (that aren't life threatening) or gender, or ease, etc. But, that is my feeling/opinion/ethics. I have no say in someone else's ability to handle life's situations. So, the author lost me at:
"they are either self-centered or empty in their narrow-minded conventionality."
I find this very callous. He has no idea what other's situations are, what physical, emotional, financial, family, phycological aspects they bring into a decision and what they can handle for themselves or family.
How lucky for the author he and his family are living in a country with health care and presumably with a good job as a professor, that he could make that decision to bring his son into the world. He should be thanking his lucky stars not denigrating others who make a different decision as 'self-centered, empty, narrow-minded'. Unless he has meet each and every one of them.
25
The range of disability in individuals with Down's Syndrome is great. It's wonderful when, fortuitously, the affected individual is high-functioning, which does seem to describe the author's child. But I have seen people with this condition who are unable to walk and communicate, never mind perform simple skills such as getting dressed. These people have not always struck me as being happy. They may seem frustrated and angry, either because they react to everything at a toddler's level, or because they have just enough intelligence and awareness to realize and be frustrated by the full impact of their disability. I can't imagine spending a lifetime living with such knowledge.
I could not possibly fault parents for any decision they make in this regard. But if a state wants to relieve parents of that responsibility, it should at least be prepared to cover all costs associated with caring for these individuals.
19
I was a foster mother to many newborn babies most of whom were adopted (one went back to its natural mother)! One baby was clearly not developing like most of them did. He was adopted at a slightly later date than most but I still "wonder" about that child. He would be over 50 years old now. I know he was much loved as he was such a sweet baby!
2
My cousin's Down syndrome daughter recently graduated from college.
4
My dog has learned to count. What is your point?
3
Easy to say for a man who lives in a country with nationalized healthcare, a strong social safety net and taxpayer-funded support system for those with disabilities.
15
How is it ethical to bring into the world a child you are unwilling or unable to adequately care for?
18
Thank you, sir, for writing about your choice. Now please mind your own business while I make mine.
34
You have the right to decide for yourselves. We all do.
15
I am reminded of this piece by George Will, about his son Jon: https://www.washingtonpost.com/opinions/jon-will-40-years-and-going-with...
1
Will left his wife with their son and married a younger woman. Fathers all too often abandon the family after the birth of a disabled child.
13
Will is wealthy, and being a baseball fan himself and author of a book or 2 on baseball, was able to arrange a long term job for his DS son inside of a baseball club doing chores. ("Chores" was Will's own word). The Wills, according to his articles, did not have to decide whether or not to abort, it was nearly 50 years ago and it was a complete surprise, according to him. He was asked if he wanted to bring the baby home, and said yes, of course, (paraphrased). Mr Will, and his son, are very fortunate that he is rich, but was he around when the son was younger? Just a reminder that all of us have different circumstances, Mr Will and his wife were not presented with any particular agonizing choice re having a DS baby, and finances were not a hurdle.
3
I had a child with Down syndrome. He also had many birth defects that allowed him to live only 6 days. I had no prenatal testing done that would have shown that he had Down syndrome or the fatal defects. Would I have aborted the fetus if I had known about either? I don't know. When he died, he was my child, my son. If I had aborted the fetus before it developed into my child, my son, then life would have been different, he would not have been my child, but that did not happen. If he had lived, life would have been different, but that did not happen.
A few months after his death, I was pregnant again. I was offered testing for Down syndrome but all I wanted to know was that the fetus had all of its parts in the right places with no potentially fatal defects. It appeared fine and I later delivered my third son, who did not have Down syndrome.
Four years later, my son asked me if he would have been born if his brother had not died. I told him I didn't know and I was sad that his brother had died and glad that he had been born.
If a person wants a fetus with Down syndrome to develop into their child, that's their choice. If they do not, that is their choice also. We don't know anything about them and we should not be making decisions that are not ours when it comes to how other people control their bodies. We don't know anything.
20
Whatever works in your worldview and situation is fine with me. It is none of my business.
Please keep it to yourself. I don't need to hear your spin on any statistics, or your idea of what is ethical, or how others decide what is best for them.
I personally think it is immoral and unethical to knowingly bring a baby with Down syndrome into this world. It is not just you and your wife that you that you are impacting. You both are not some kind of island.
14
Dr. Kaposy didn't force you to read his article. You read about his thoughts of your own free will, when you could've scrolled right on by. He has the right to his point of view, and to attempt to get his thoughts published, just as you have the right to disagree with him.
It should be the woman’s choice. No guilt trips. Just a choice made freely. And none of your business. You had your choice; let other people make their own choice.
14
The United States does very little to help
parents who need help in raising their children.
Why don't we do more ?
If you really think all Down's Syndrome children
should be aborted - where does it stop - if it stops -
children born without a limb(s), children born blind/deaf, children born with an IQ less than 70, 80, 90...100.
Children who will not be beautiful and tall and very
intelligent...children who will not be boys or girls.
Seeking to only have perfect children so that we
will only have a perfect society is the path to
perdition.
4
You're assuming there will be a domino effect that may not--indeed, probably will not--come to pass. Many people want to avoid having children who will face illnesses that will kill them minutes or days after they leave the womb, or avoid having children with Down's because they don't think their families could bear the challenges they may face, but that's not equivalent to aborting a child because the fetus is missing one limb, or because he won't be the captain of the high school football team.
Plus, not all of us with myriad medical challenges are always glad we were born. I have days when I wish I weren't here.
3
I am against abortions after the third month unless there are medical issues or severe genetic defects involved. If you are not responsible enough to prevent a pregnancy or to terminate it in the first three months, then in most cases, your right to chose is no longer worth the life of an embryo growing inside you. That being said, I find this Op-ed disturbing. To knowingly bring a Downs-syndrome baby into the world is irresponsible. If this is what it means to be a Bioethicist, then they need to find another line of work.
9
Many birth defects aren't detectable before about 4-1/2 or 5 months. Deciding as soon as the info is available not to continue a pregnancy is NOT irresponsible.
5
Some chromosomal abnormalities are not detectable until the third trimester. Not everybody can afford expensive genetic testing. And some women find out their pregnancies are endangering their lives close to their due dates. What of them?
I would like abortion to be safe, legal, and unusual, but this is not as black and white as you seem to want it to be. And the fact that you are a man gives you less standing in the matter, like it or not. If men could get pregnant, I suspect the discussions of how women make their reproductive choices would be quite different.
8
Please reread my comment - UNLESS there are genetic defects means what it says. As far your comments on my opinion not counting because I am a man - this is the crime of identity politics, turning every issue into one that divides. What nonsense.
The NY Times should have solicited a counter view to this before publishing.
Having a child is a large task filled with pitfalls. To knowing start off with such a burden is not ethical. It is selfish to many, including the child.
Thanks to science we have the means to give the best chance of producing healthy productive offspring and we should take every advantage we can.
8
Whoever the child or person is, acceptance,empathy etc is the way to regard others but most especially ones own child!
It is immoral to waste resources in the survival of defective humans when so many healthy non human animals are deprived of the more meaningful lives that is their right. If this sounds cruel put yourselves in the place of the polar bear mother who is forced to watch her cubs starve to death. Or in the place of the millions of healthy cats and dogs who are murdered every year in the name of "animal control". There are already too many humans in this planet.
7
Wow. I can think of better ways to express kindness to animals than "defective humans." If you care so little for human life, why would you expect others to have empathy for animals? What principle is that?
1
Humans have a flexible definition of ethics and morality. They convince themselves that its is “ethical” to pursue an ever larger population of their own species, through the despoliation of precious resources that belong to all of the planet’s inhabitants, and through medical “advances” that allow humans to live lives that would not be naturally viable - either because of congenital defects or the acquisition of terminal diseases. On the other hand, most humans don’t give a second thought about the immorality of killing sentient non-human animals, for “fun” or to wear their skins, or to use their parts for bogus medical purposes, or as a simple result of ignorance, neglect and anthropocentrism. Humans, as well as a few other apes, are special only in the sense that they are the only species that are capable of malice, egotism and cruelty. If I can help redress even an infinitesimal fraction of the crimes committed by my species against our sentient non-human siblings my life will have been worth living.
Bizarre. You're aware humans are animals too, right?
Today, I saw a frustrated mother of a down syndrome child reach up with two hands and choke her kid who refused to get up and walk. I'm sure it's very difficult. Maybe y'all ought to decide for yourselves and leave the decision to the mother who will care for that child for the rest of her life.
22
Well, if you value the beautiful life you've brought into this world, perhaps you can elaborate, especially as a "bioethicist," on why you think it appropriate that others snuff out such a life if they find it inconvenient? Whatever point you are hoping to make, if you believe that caring for life when it is convenient to do so is not what I would call making a strong case for raising children with disabilities.
2
Kaposy follows a different cult from the pope -- he’s a radical egalitarian rather than a Catholic -- but I have to ask both of them, what’s so special about chromosome 21? For all chromosomes, errors of meiosis sometimes result in an embryo getting an extra chromosome. These usually miscarry; only trisomies of chromosome 21 commonly result in a viable fetus (called Down’s syndrome). That’s probably because chromosome 21 is the smallest somatic chromosome. If Kaposy and the pope are right that all these trisomies are blessings that deserve to be born, then it follows that if it became medically possible to prevent miscarriage of all the other trisomies, we should do that. Then eventually a large portion of the population would be trisomies supported by all of us diploid organisms. I don’t see how the Kaposy/pope camp can argue against that scenario.
4
I am surprised so many people are saying it would be better for the person with Down syndrome to not exist at all, because s/he may outlive their parent. I feel this way about many other disabilities, but not Down syndrome. Being prochoice to the core, this sentiment is independent of that argument.
18
I wish we didn't have to have articles like this, approving or disapproving of abortion for this or that reason. I wish that the decision to have or not have a child remained private. Private means, none of anyone else's business. This article offended me.
6
This article and others like it appear because so many states have jumped on the Down Syndrome bandwagon to justify the state determining which children we must force to be born.
2
Yes, MegWright, and as long as folks write these pieces, the longer their noses will be buried in the affairs of others. As long as outsiders can weigh in on what goes on in our insides, the more control trolls will have over my life. Enough!
It would be interesting to know if the author holds the same view once his child is 30 or 40 years old.
Having seen first hand the impacts of intellectual disability on an individual with the body of a man and the mind if a child....it's heartbreaking and disturbing. What do you do when you find them watching porn ? How do you cope seeing them confused and frustrated as they watch all their siblings get married and obtain their own houses, lives, kids, RELATIONSHIPS and INDEPENDENCE....while they still live at home with mother and father who increasingly lack the physical ability to care for them effectively?
Then to watch the drama as the siblings argue about who and how to care for the disabled child once mother and father are gone? Not to mention the financial burden on their shoulders....
For these reasons I would have aborted in a second if my pregnancy had been diagnosed as Down's Syndrome.
25
Any situation in which a fetus is brought to term with a known condition that will require significant assistance from others is an insult to society at large.
9
I'm not sure why this is an ethical issue at all. I know some people have said fairly poorly thought-out things about the ethics of children with bioethics (e.g., Richard Dawkins), but I find it hard to defend the view that it's not permissible.
You don't make anyone's life worse by not bringing them into existence. If you did, then all of us who don't have as many kids as possible would have a lot to answer for. So there's not some other kid without DS who's made worse off if you choose to have a kid with DS.
Someone could be made worse off by being born, if their life were positively of disvalue to them. But that is not what having DS is like at all. People with DS live lives that are important to them, whether or not we want to get into a debate about whether or not their lives are of as high a quality as someone without DS.
One might argue a harm/benefit asymmetry: when you have a kid with DS, you give them the benefit of living but impose the harm of DS on them, and one might think that harms and benefits don't aggregate in a way that makes this permissible. Imagine I gave you a million dollars but stole your television: you might end up better off, but I still did something wrong. But that seems to overgeneralize to anti-natalism, since nearly everyone lives with problems that would be wrong to impose on them without permission. So if you think having kids with garden-variety problems is permissible, you should think it's OK to have a kid with DS.
1
I'll add that I don't read the position of the op-ed to be that it is morally impermissible not to have a child with DS. If that is the position, I disagree, because having a child with DS may impose non-negligible costs on parents that one might reasonably want to avoid even without bigotry or prejudice to children with DS.
(Even in the case of selective abortion for bad reasons, like sexism, I'm not sure the abortion is wrong because it harms someone directly, because not being born is not a harm. If it's wrong, it's because of the intentions of the person doing it or what their action expresses or reinforces.)
1
I agree with the author. But, I was expecting a more rigorous ethical examination, especially by an ethicist. The main argument here is emotional, which I totally get but ethics are not emotion. Quality of life, benefits, personal burdens, ability to secure a future for a child you bring into the world, societal burdens; these would seem to me to be elements that are commonly considered by bioethicists but not addressed here.
10
He's an anti-abortion zealot first, a "bioethicist" second.
4
Kaposy follows a different cult from the pope -- he’s a radical egalitarian rather than a Catholic -- but I have to ask, what’s so special about chromosome 21? For all chromosomes, errors of meiosis sometimes result in an embryo getting an extra chromosome. These usually miscarry; only trisomies of chromosome 21 commonly result in a viable fetus (called Down’s syndrome). That’s probably because chromosome 21 is the smallest somatic chromosome. If Kaposy and the pope are right that all these trisomies are blessings that deserve to be born, then it follows that if it became medically possible to prevent miscarriage of all the other trisomies, we should do that. Then eventually a large portion of the population would be trisomies supported by all of us diploid organisms. I don’t see how the Kaposy/pope camp can argue against that scenario.
1
Ah, yes, Canada, where citizens don't have to worry about health care costs. Like the vociferous ex-politician (USA) with a DS baby who chastises "choice" when their whole extended family is covered by federally supplied health care for life because of ethnic considerations. Who, in the USA, will pay the SSD for life, and for all the expenses to society of purposely having, by force of law, a baby who will most likely never contribute to the programs that baby/child/adult will most thoroughly use. A little too close to the Handmaid's Tale.
9
Unfortunately there is a lot of generalization going on in the discussion here. Some people can care and want to care for a down syndrome person. Some can but just don't want to. Does that make them bad people? I do not know. This is a free country. Is there a right to be egoistic? Some people cannot care but decide to try anyway. Some people cannot care and decide no to.
Yes, there are a lot of success stories and I rejoice in that but there are also a lot of horrible stories out there. A friend of the family decided to raise a down syndrome child but this turned out to be too much and eventually the child had to be put in a home. (The child turned out to be so strong and violent that the parent lives became endangered.)
It should come down to free choice but since I do not believe in heaven or life after death, I also believe that every fetus needs to get a chance to experience life. Still the fact that society is currently not set up for taking care of down syndrome or handicapped people we need to change that so we can make choices that are not just based on finances or convenience. But the free choice has to be there. To me there is nothing worse for a child to life with a family that does not want it and is not capable to love the child. I am sure however that some disagree.
2
The decision as to whether to carry a pregnancy to term should be made by the woman carrying the fetus and, if she chooses, the father of that child. So I will not presume to tell others what to do.
But make no mistake: every child brought into this world is a selfish choice, healthy or no.
6
This article is quite frankly insulting, this line "If you value acceptance, empathy and unconditional love, you, too, should welcome a child with Down syndrome into your life.", it implies that a couple that choose not to have a Down's syndrome baby are unfeeling monsters or worse, and that is as bad as any pro life person. Everyone has different circumstances, living in Canada where the author does, that still has the notion of social services and a safety net..the states that passed laws banning abortion for down's syndrome kids are states known for poor social services, so they are forcing parents to carry a down's baby to term then saying "see ya, your on your own". Not everyone is like the couple in the story, likely well educated, fairly well off, with the ability to support the child now and make sure they are okay once they are gone, and making it seem like the decision to abort is like aborting a kid that is too short/tall/male/female, as if dealing with Down's syndrome is all about appearences and expectations and that isn't true.
If the author wanted to write an op ed piece instead of approaching this as holier than thou, perhaps you should use some of your empathy you claim to have with those faced with this. Quelling fears, describing the joys of a kid who has down's is fine, saying it isn't horrible, etc is advocating, saying those who choose to abort are horrible people is judging.
25
You are Canadian. You have an excellent healthcare system that will not bankrupt your family as you care for your child.
Nothing in life is guaranteed, and persons born healthy can experience terrible events later in life that may make them incapable of caring for themselves in adulthood. But all people who intend to have children hope their offspring will reach adulthood and become self-sufficient.
There's no more terrible fear for a parent than dying and leaving behind a vulnerable child who will never be able to be fully independent. And it is very, very wrong to deliberately burden healthy siblings with the lifelong responsibility for a sister or brother.
May your child always be safely cared for. Far too many people can have no such expectation for their own vulnerable children. Shame on you for questioning the motives of those who choose not to bring such a child into the world.
19
In my experience, most people with disabled parents, children or siblings are (truly) blessed to see the person first and the disability second. For them, disabilities are accepted facts that recede into a larger whole. In my experience, near enough everyone else, no matter how well-intentioned, seems unable to pull this off. Their focus is frozen on the disability, perhaps arrested with fear of the pain that people with disabilities may be suffering, and perhaps seized with some unmentionable, atavistic fear of "outcasts" too. But people who can see the person first have acquired a wisdom that can benefit all of us, if only we choose to conquer our fears, abandon our protective certainties, and seek that wisdom out. And this, perhaps, is why we all benefit when some families choose to include people with disabilities in their families, even now, when they do not have to. Perhaps we should consider ourselves fortunate indeed that some people have the emotional and economic resources to make this possible, even if we ourselves do not.
1
Not everyone can accept the challenges of a child with something different about it. Therefore those who can't handle retardation issues should be able to terminate the pregnancy...one sees young adolescents such as a child we know who had another genetic syndrome that includes gigantic physical size and slow mental functioning. This child's parents are in full flight from their son's affliction and are actively harming his chances to live a long life by permitting him to vape at age 14, weight 400 pounds. My coworker was urged by several people to have an abortion when she was pregnant with this child, who weighed 18 pounds at his excrutiatingly difficult birth. He is being adjudicated this week for throwing rocks at cars and people in the neighborhood and she is in full flight from that reality as well...
5
How would you address the eating habits of a 400 pound, mentally deficient man? I would guess that food is one of the few things that he chooses for comfort. Specifically, how would you stop him from eating so much, and make him exercise more?
With parents who are in full denial that he has any endocrinology issue, despite the admission from his mother that he is a kind of monster, there's no hope. His dad weighs close to 500 lbs and they live in walking distance to doughnuts, pizza, candy, bakery...
Reading many of these comments was so disheartening. I'm the parent of a 27-year-old young woman with DS, and the meanness, the judgment, the condescending pity, the ignorant assumptions made here--jeez, I had no idea I lived in a world where this is what people think of me and my family. You don't know what life is going to hand you, but the acceptance, flexibility and unconditional love you gain from the experience of welcoming a baby with DS into your family serves you well in handling everything else that comes along.
7
People are discussing what is a very reasonable decision: choosing an abortion because they do not want the life altering experience of a special-needs child. This opinion piece wants to make that choice for other people.
I don't think the opinion piece is correct. I think there is a cost-benefit analysis that can be done while still pregnant, and unless you add some crazy morality imposed by religions, you would conclude that the cost of a DS child is very high. And there is NOTHING WRONG with abortion.
Don't take it personally. Generally there are more benefits than people know ... they only see the costs. And there is a strong reaction to this opinion piece which is unsupportive of the choice of abortion. And I am pro-choice, so the article instantly grates. People should choose to not have a child for LOTS of reasons. Including if they feel unable to take on a DS child.
A lot of the comments are that the author is relying on broader social support, and that their choice also had implications. When you die, and are survived by a DS adult, when they die, and are survived by a DS adult, they have a social support system that they take for granted. EVERYONE probably misunderstands the proper responsibility we have towards each other.
It is grating to see so many people react so selfishly.
But I am pro-choice and I don't in any way support the authors position that people need to grow and deliver babies they do not want.
8
Yes the mean comments really surprised me as well. Clearly they come from not knowing people who have Down syndrome. And I didn’t get the impression the author was condescending to those who chose not to include folks with Down in their families; he seemed to be affirming that it is going well for him. What a world.
1
You did gain “unconditional love” but you cannot dictate this to other people - you made your choices - realize that other people will choose differently.
1
Gerber Foods chose for the first time in their 91 year history a Down Syndrome baby as their "spokes baby of the year." He is named Lucas and he is an adorable 18-month old. Gerber is to be commended for making this very important decision. These children have worth and value and should not be dismissed by our society. They are just as valuable as any citizen and should be treated as such. Anyone who chooses not to abort a Down Syndrome baby should be praised and not condemned. We should offer as much assistance to these families as is needed for choosing life.
2
The title of this article implies that choosing to have a child with Down's syndrome is the ethical choice- I think this is unfortunate. Again, as always, in an article in which the author chose to have a child with an unknown-before-birth set of congenital problems, the author wonders why more people don't make his choice. Because, Dr. Kaposy, your choice reflects your values and is YOUR choice. There may be many women and families who make a different choice because they don't have your knowledge, your time, your wealth, your values. That doesn't make their choice less "ethical" or "right."
18
The ethical case? I assume this writer has a comfortable and secure financial foundation because he doesn't even address the reality of having a specials needs child. To surmise that those who choose to abort a down syndrome baby is because such child doesn't fit their scenario of the "normal life" dream is obnoxious.
This assumption betrays an entirely entitled life experience. He may have the means to arrange a trust fund to provide for the long term sustenance of his grown child long after his parents are able to watch over and protect and care for him but it apparently never has occurred to him this is not the universal experience.
The majority of people do not have such fortune and the thought of bringing into a world a child left alone without the security of guaranteed income, skills and family seems a harsh and irresponsible action.
16
He lives in Canada- socialized healthcare and a strong social safety net.
1
To not choose an abortion and to love your child is the default position. No doubt these are good, loving, capable parents. So, what was the purpose of the article?
2
I wonder if the professor would accept this argument in a paper from his students. This essay adds nothing at all to this complex. There's not an "ethical" argument in here. It's emotional manipulation at best- the author basically drafts the paper to attempt to force the reader to choose between agreeing that he or she should have a child with down syndrome admitting that he or she does not value empathy. A weak-minded type of argument.
Moreover, the author ignores the very real challenges of raising a child with down syndrome, choosing instead to focus on the parent's feelings about having a child who is "less than perfect." This argument flawed because it ignores myriad morally relevant considerations that go into a parent's decision. (Hello, how do you think all of us in America are going to pay for a child with down syndrome, or any other serious disability?) This argument also suffers from the same flaw identified above: it attempts to force the reader to either admit she should bear a child with downs, no matter what the cost, or admit that she is a morally flawed, selfish person who simply wants a "perfect" baby like she saw on Pinterest.
Weak.
17
As many others have said, I think there are lots of reasons why somebody might have empathy and unconditional love but not want a Downs baby. In addition, that last line almost smacks of somebody encouraging you to buy a certain type of pet - but that may just be me over-reading.
7
"I had no idea that we, as a nation, have come to the point that we no longer think or care at all about a living baby, and will abort one with impunity and even a sense of rightness if they are inconvenient to us."
Framing the issue as a simple matter "inconvenience" is very non-compassionate. I don't understand how we pro-lifers can be both anti abortion as well as anti government provided family and child support services. Preschool, childcare, maternity and paternity leave should be at tax payer expense for all. And it would be, especially for special needs children and their families, if we weren't such hypocrites.
"In the land of $5 lattes and restaurants to fuel every appetite, 14 million children are still going to bed — and to school — hungry.
These children, who represent 19% of all kids nationwide, live in a food insecure household, which means that their families lack the necessary resources to buy food for everyone in their home."
See: http://www.aecf.org/blog/hunger-a-harsh-reality-for-14-million-children-...
We pro-lifers don't get to be both high minded as well as hypocrites.
Hold your nose and give women their reproductive rights OR open your wallets and be pro-life and compassionate to the suffering of children, especially special needs children. Anything else is just the height of hypocrisy.
5
Bravo! One of the few “pro lifers” who really is pro life. Yes, we all have a moral duty to provide medical and other support care to all our citizens.
This isn't about ethics. It's about choice. Your choice. Your alone. As it should be for everyone. Fortunately your choice was the right one. For you and your family. Yours alone.
13
Boy do I have issues with many of these comments! My daughter has Down syndrome and she is the light of my life. What bugs me is all the concerns people have about what kind of life she will have because of her disability. Guess whose responsibility that is? All of ours. How do you treat people with a disability in your own life? That your kids go to school with? People you see every day? Think about it. Try harder. You could get hit by a bus tomorrow and be disabled or have a stroke and need care the rest of your life. Life is never “perfect”. What is needed is not blame for being “irresponsible” but compassionate human -and therefore equal - rights for all people with disabilities. Period.
133
Stephanie,
Lovely comment and you sound like a gem. Good luck to you.
2
I commend you for your love and acceptance of your daughter and your commitment. When I was having children, however, I was simply not emotionally equipped to handle this kind of a challenge. I suspect that may be true for a large percentage of young parents. I am very thankful that I was never faced with that decision. I'm pretty sure I would not have gone through with the pregnancy.
12
So well said.
1
My best friend was in this situation a little over a year ago, and listening to her pour out her anguish over what to decide made me certain of one thing: my uncertainty as to what I would do in a similar situation. It is a highly personal choice and I can really see going either way. But if I DID choose to abort, it certainly wouldn't be for lack of love for my child or the loss of a "middle class life" for him or her. It would be for fear and uncertainty over the serious medical risks that sometimes go hand-in-hand with DS, and even more, worry for what would happen to my child after my husband and I are gone.
13
What an odd opinion piece. There is no law, or proposed law, in either the U.S. or Canada, that mandates an abortion for fetuses with down syndrome or other physical/mental disabilities discernable en utero. You could financially and emotionally handle having a child with this disability. Other women decide they do not want to for whatever their reasons. They have as much right to terminate as a woman who decides she wants to go to term.
7
I am always leery when an opinion starts with "I am pro...., but..." Again, what is acceptable and workable for one family is not necessarily the same for another family.
5
The author of this piece is a professor of bioethics. If she was working a minimum wage job, and still had the financial and other obligations of caring for a disabled child, then I wonder if her outlook would be the same?
10
Goes to show how cognitive skills breakdown and illogical thinking takes over. On the spectrum of Down syndrome is a vast array of disorders that are typically too complicated to handle within a normal economy. So, maybe the governments' of the world want to foot these cost but I'm doubtful. Horrible idea.
2
It is not "narrow-minded conventionality" to want a child who will be able to care for herself and care for her own children. Kaposy makes his decision sound like a wonderful choice everyone should make. But if everyone had disabled children, homo sapiens would soon vanish. All those disabled people would require non-disabled people to support them. And Kaposy is forcing the rest of us to support his bioethics lesson for decades to come - - and likely long after he is dead. Pre-modern cultures universally killed disabled children - - by exposure in the case of the ancient Greeks. We are wealthy enough that we don't have to do that, but that doesn't mean we should take the current cult of radical egalitarianism to such extremes that we believe such ridiculous claims such as "Gender is a social construct" and "Disabled children aren't disabled, they're just different."
6
It’s so sad to read this. Whenever I see someone claiming “ it’s for the best interests of the child to be abort d,” they are really saying they don’t want the work involved with raising a special needs or sick child. I was born with and triumphed over an aggressive genetic disease. After10 massive reconstructive surgeries, I live independently. People who just don’t want the “burden “ of parenting a sick child don’t want to be parents in the truest sense of the word. Let that sink in before you respond.
2
I came from a middle class family, my parents would never have been able to fund 10 massive reconstructive surgeries.
11
Nor would my parents but you do what you have to do. When we had the insurance, then insurance covered the payments. When I was an adult either I covered it myself or I let it be known that I was unable to pay for surgery. Little known fact: hospital billing departments have special procedures in place to waive the bill.
Your choice. Others can choose another.
8
This article is dishonest because it presents a false dichotomy: the author tells us that either we accept a Down syndrome child, or our only goal is a conventional middle-class life where our offspring goes on to college, marriage, and kids.
Not true. Perhaps people abort a Down syndrome child because it places immense limits on many basic measures of fulfilment and wellbeing for both parent and child. I couldn't care less if my child went on to get married, go to college, or reproduce. But I sure as heck would care about some measurable quality of life for her.
The author implies we are selfish if we abort a Down syndrome child, but terminating a pregnancy can be a humanitarian act of compassion that causes the parent profound pain.
At the risk of being lambasted here, I will say that I do not think there is any miraculous wonderment in severe chromosomal abnormalities. You sure as heck shouldn't be shamed if you are afflicted, and I support broad public support for anyone suffering from any disability. But the idea that this is some beautiful difference to be celebrated by those of us enlightened enough to get it just doesn't ring true --- it's sugarcoating the simple fact that nature is random and brutal and that there's nothing good about suffering and disease.
17
Wonderful article! What a breath of fresh air. It is always a matter of choice, that is, whether to be narcissistic or charitable, self centered and selfish or giving. The gift of life was chosen for us, the living. Why be parsimonious about letting the less than perfect enjoy life?
1
This is a personal decision, for the mother and the father. Everybody else should stay out of it.
9
This is kind-hearted essay, based on the author’s and his family’s long experience. I was with him until the conclusion:
“If you value acceptance, empathy and unconditional love, you, too, should welcome a child with Down syndrome into your life.”
No sir. If you are allegedly “pro-choice,” you are not welcome to preach sermons that effectively define any overwhelmed parents who elect to abort a fetus with Down’s syndrome as intolerant, not empathetic, and incapable of unconditional love ... to define them, in short, as your inferiors.
That is not ethical. Love and life are always tacked and glued and hammered together from conditions.
18
There is one unreconciable issue I have with those that avocate for ending an early life. They in turn will often avocate for equal rights and against the death penalty. Why won't they extend the same considerations to those who are in the process of coming into this world?
If a state forces me to have a Down Syndrome child, because abortions are illegal, will that state pay for the enormous health costs associated with that child? Oh, they won't? Oh, they're against socialized medicine and hate abortion at the same time? In that case, how dare they force people to have that child. Absolutely irresponsible to place that burden on families.
17
We made the decision to abort a Down syndrome fetus after considering that fate of our first child. She was barely two and we could not impose a long life of care-taking for a younger sibling. Would she be agreeable or resentful? How much would her life dreams be dashed? How can this be “pro-choice”, when destiny is imposed?
149
You make an excellent point as it's often siblings who care for a DS family member. In childhood and after parents are deceased, a DS child becomes the responsibility of other family members. In addition, prenatal testing cannot determine if the child will be high functioning or severely impaired. In all honesty, caring for a high-functioning DS child is vastly different from a child with significant physical and intellectual issues. The bottom line, of course, is that this is a family decision and not a government's choice.
33
Great point and kudos for bravely telling your story. I have seen what happens to the older siblings of families that get overwhelmed by the needs of one child and the other children are either ignored or are expected to become caretakers. Its a valid concern.
30
I have a younger sibling with Down syndrome. My parents are not rich, and are not religious; at the time there was no prenatal testing available, so having him was not a choice. Deciding how to raise their children, however, was. My parents always included my brother in ever activity in which he could meaningfully take place. I have never, ever felt I had destiny imposed upon me - in fact, I have had the most successful and fulfilling career, and a wonderful family. Growing up with my brother opened my eyes to the diversity and depth of human experience and love in ways that nothing else could have. Far from constraining my life, he enriched it and boosted its potential. He was and continues to be a true blessing.
28
I hope the good doctor uses some of his resources to set up long-term care for Aaron when he and his wife can no longer provide it.
It's one thing to care for an infant or child with a disability when you yourself are young and fit. Quite another when that child is middle-aged or older and you're not around.
13
The right to choose abortion is based on what the pregnant woman believes she is capable of coping with. Whether the fetus is deformed or perfect is NOT the issue.
There is no justification for debating the right to abortion based on the supposed value of a potential person to society at large. Only the female carrying the fetus in her body has the right to decide whether to terminate the pregnancy or bring it to term. Abortion is about HER and her choices, not about the health of the fetus.
7
Chris, you live in CANADA, with universal health insurance and family friendly governmental support, good public education, and respect for the individual.
If you lived in the U.S.:
Aaron's infant heart surgery could have bankrupted you;
Parental leave may have been nonexistent;
You might have been unable to afford good childcare;
If you or your wife became ill, you might not be able to care for Aaron; or one income might not have been enough to support the family and a special needs child.
You would have feared the corruption of public education, perhaps good special education would be nonexistent when he needed it.
AND Down's Syndrome individuals are now living to 50 or longer: who will take care of him when you are unable to do so? I have a great great nephew who is Downs. His family love him a lot, but his older sister will be burdened with him in his later years because his parents are already in their thirties.
In the US, Down's Syndrome is an economic disaster for many families and the decision to abort is economic rather than moral or emotional.
10
Do "I wish.." and "You...should.." belong in any "The Ethical Case for.." as the author mixes personal narrative with advocacy. Good fortune to him and his own particular path.
The arguments of Pro Life and Pro Choice make "the right choice" or "the right choice for her/them" for the rest of their lives seemingly impossible to determine so the way forward may be directed by the practicalities and expediencies of the day.
Is the right answer the good choice?
5
If your child ends up needing millions of dollars of care because of his condition, or suffers pain beyond reason, I hope you have saved enough $ to cover it and hope you have a huge reservoir of tolerance for suffering. You do have the right to choose, as we all do, whether or not to bring a child into this world. But your article is full of optimism and lacking in pragmatism. Who will take care of your son once his parents are deceased?
8
Not to be mean, but we have an overpopulation problem as it is. We don't need more burdens to society.
5
Who will take care of your son when you and your wife are gone?
I've taken care of my sister (brain-damaged, not Down) for the past 18 years and I'm exhausted. I love my sister but, let me repeat it, I'm exhausted.
Maybe that's part of the reason. No matter how sweet, how loving, how enriching children with Down syndrome are, they do become adults who will always, let me repeat it, always need someone to take care of them. Always.
17
"If he could grow up to be anything, he would probably be a veterinarian."
There is the answer as to why perhaps one should reconsider giving birth to a fetus that shows some genetic or biological abnormality: its life is limited from the start. So effectively, you, the parents, have made numerous choices *for* your child before it has a chance to let loose that initial primal scream.
So, if your son were to ever turn to you and say "why can't I be a veterinarian?" you need to tell the truth, and say "we made that choice for you; sorry."
Harsh truths, there, like it or not.
6
If you value acceptance, empathy and unconditional love, you, too, should refuse to reduce women to no more than a means to an end to birth the world you desire.
4
Being pro choice I support the authors right to make this choice. But that said I can’t imagine why anyone would knowingly and willingly have a child with a serious genetic defect. And I find it disturbing that the author suggests that parents not willing to have a down’s baby are somehow selfish.
9
Babies grow up and become children. Children become teenagers and then adults. What does Chris Kaposy plan to do when his 20 year adult son with Down's Syndrome still can't take care of his basic needs without help?
11
The most ethical case for having a baby with Down's syndrome is not to have one at all, but it has nothing to do with Down's syndrome.
World population is 7.5 billion people. Optimal world population is 1.5 billion people. World overpopulation underpins much of the war and famine on the planet, and is the driving force behind global warming, desertification and habitat loss. The ethical thing to do is not to have children at all. Forego or adopt!
Dr. Kaposy and his wife seem to have considered the ramifications of having a child as it applies to them, but not to the rest of the world. At one point he says, "Perhaps the question to ask is: Why do we have children at all?" Yes. But rather than address that, what followed was a statement about acceptance, empathy, and unconditional love. Nice, but not really on point.
"Why do we have children at all?" Seriously? Hint: 8 letter word, starts with an "i." Rhymes with "Tim's pinked."
1
I can stay with the argument up until the end, when it turns into a pretty grotesque either/or: IF you hold the wonderful values of empathy and so on, then "YOU SHOULD" proceed with such a pregnancy. The "should," and the conflation of one action with holding these values, is awful, coercive, rhetorically manipulative, and completely out of keeping with the author's supposed pro-choice stance.
6
"...it means choosing in accordance with one’s own values."
It appears that if it is in accord with your ethics to care for a child with Down syndrome, it is ethical to care for a child with Down syndrome.
I think we knew that.
If you want to address the broader social ethics, you need to do more work than this to address the obstacles raised by:
*racism
*rape
*incest
*poverty
*lack of access to medical care
*religious stigma
*social stigma
*economics
If you value acceptance, empathy and unconditional love, you should think more about the real world implications of your ethical policy.
6
Dr. Kaposy, you and your wife made the right choice, which no choice at all. Pro-choice is an oxymoron when it comes to life and death, outside our own. We have no right to decide for others, including those yet to be born. When it comes to our own life, our choice belongs to us. When it comes to death, neither our life or another's life belongs to us. I am gladdened to see you made the right choice: No choice at all. Just look at the gift you were given!
1
I'm glad Dr. Kaposy is not my bioethicist. I would like to be able to make my own bioethical decisions.
6
"If you value acceptance, empathy and unconditional love, you, too, should welcome a child with Down syndrome into your life."
No thanks, I am not as holy as you, I am just an average person. I will value acceptance, empathy and unconditional love some other way.
5
The claim that parents who choose not to have a special needs child are either uninformed or selfish is incorrect; some parents make this choice because they do not want to bring a child into the world who will spend much of their life suffering and in pain. Raised in a religious tribe that favors large families, I have known several families where the youngest child had down syndrome. Of course these children are sweet and their families love them. But many of these children also suffer enormously. They often have cancer and other serious physical ailments that require years of surgery and painful medical treatments. Their ability to comprehend why they suffer so much pain is limited, so they understandably are very distraught by each new medical procedure. I have had a front-row seat to children who have spent many nights at the hospital screaming in pain, year after year. And for every family that has the resources and emotional fortitude to provide a special needs child with the support they need, there is another family unwilling to admit they don't have what it takes and subjects their child to benign neglect or worse. I have seen families that warehouse their "special" children in the basement, or delegate their care to siblings who are barely older than they are. Parents who do not want to subject their children to a life of suffering should not be shamed--it is ethical to want the best for your child from the moment they are born.
12
I spent six weeks observing a chaplain at a state supported living center. There were so many aging residents with Down Syndrome. Their parents were dead in many cases. Looking at these sweet, cheerful DS adults against the glum institutional backdrop, I realized how scant the resources are for the aging DS adults who are unable to live on their own. I realized that I would likely choose abortion over consigning a beloved child to a poorly funded state facility should I precede that child in death.
16
Doubtless, the author and partner have the resources including a health system that will permit them to bring up a child with Down's syndrome. In the US however the anti- abortion brigade with their belief that life begins at conception is singularly unwilling to accept the societal costs of rearing, educating and supporting disabled individuals. For that group their interest in life ends at birth.
11
David, I so agree. The ethical costs are personal, the societal coasts are enormous.
3
I live in a state whose governor's goal was to eliminate taxes for businesses and reduce social and education spending to well below the bare minimum. In spite of federal laws mandating the funding of special education, the governor's education budget not only cut so much money from schools that some had to close before the end of the school year and others had to go to 4 day weeks, but he specifically targeted special ed. When school districts complained, he told them if they wanted to fund special ed, they'd have to figure out how to fund it themselves. Oh, and fwiw, this former governor, such a very "religious" guy, is now Trump's representative for religious freedom.
2
Fabulous article - and one that has me re-thinking my own long-held "values."
As he puts it SO VERY THOUGHTFULLY - "Why DO we have children?"
And - to his credit - he recognizes that this is NOT a one-size-fits-all variety of question in terms of how a "good person" will answer it.
Of course, it spills over into another tough area - how does one feel when one's child makes a choice of a life partner that's "at variance" with parental "hopes?!"
I'm sure somebody smarter than I am could pick that apart and say that "ethically, there's no comparison," but I'm inclined to disagree.
Thanks again, Dr. Kaposy, for shining a light on what I'm sure you'd agree is one of life's thornier decisions for those forced to reach one.
1
This piece touches on two profound issues, one all too visible, that of abortion and choice, addressed here lovingly and caringly. On the local and individual level, choices can be difficult and loving, and the choices matter.
The much more powerful issue is the way in which far too many people think of people with other needs and capacities as defective, unworthy, not worth the trouble to get to know or to live among. Coming to understand that other people, with other gifts, are capable of wonderful and rewarding lives, is the beginning of a very different relationship to society and the world.
3
Years ago, an amazingly attractive couple had a child with Down syndrome. I had become friends with the woman, who did some typing for me in the days before personal computers became a household necessity. She asked my advice about whether to keep the baby or not; they were so shocked that they were considering giving her up. My advice was that they keep the child. My reason: a child is not valued for its perfections or devalued for its imperfections but about the love which parents and child can give each other. About three months later, I got a call from the woman, in tears, to thank me for my advice. They had kept the child and were as happy with their baby as any parents could be with theirs. Although we drifted apart--I bought a computer and did my own word-processing--I never later heard that they were anything but happy with their decision.
I should locate myself on this issue: I believe that the right to make any abortion decision, since life or its beginning is defined differently by different religions, is a right guaranteed by the First Amendment's provisions for freedom of religion and from government establishment of religion.
4
A courageous choice on your part. Canada also offers full medical care coverage for its citizens. The United States does not. The people with Downs will have higher medical costs throughout their lives. We need to realize that the right to medical care is just as important as the “right to life”.
17
Thank you for this wonderful article. As a physician I completely understand the difficult situation you were in, when you received the pre-natal tests.
When my wife was pregnant, we thought about pre-natal testing a lot and asked the following:
WHY do we want to perform a pre-natal test reveals that our child has a disability?
We realized by asking this question we were opening Pandora’s box with the question about abortion.
While we are not against abortion at all, we realized that we would not want to decide if we want to raise a child with disability. We simply felt that the decision of terminating the pregnancy would have been a huge burden.
The biggest challenge though was to convince the physicians that we did NOT want to do the tests.
Maybe we were asking a naive question. We never regretted the decision NOT to test.
4
As a physician, you would have had the resources to pay for the services a child with a disability would need. You would have the income to allow your wife to be a full time caregiver or to hire help.
Many women or couples don't have those options and make a different choice.
220
Some prenatal testing does give you a chance to make sure that your medical team is ready when a child with, say, a heart defect is born and needs immediate care. That alone could be worth it.
2
That is absolutely correct that I would have the resources.
Yet, that was not the point.
I should have said that I know the science of these tests and the medical reasons why they are done.
My point is, that I should have the right to choose if I want the information or not.
Because with that information comes a decision to make.
1
Don't know why there is a need for this article in the NYT. Such an issue is and should continue to be a private choice.
13
Private and secret are two completely different things. Chris Kaposy and his wife were able to make their choice privately - meaning without government or religious interference. Yet they chose to share their story instead of keeping it secret. One good reason for sharing thier story, since you've asked why it's necessary to do so, would be to help other families facing the same choice. We see fewer children and adults with this syndrome since so many are aborted before birth. Just knowing a person with Down's syndrome could help someone make their choice - yea or nay - about having a child with this syndrome.
3
Yes, the decision is a private choice but the input from others may help a couple make one of the biggest decisions of their lives.
1
I'm not convinced that anyone from Canada has anything worthwhile to add to this discussion in the US. In Canada, a handicapped child's healthcare will be covered for life. Not so in the US. And the author is a professor with what one assumes is an adequate income to provide all the care needed for that child and to set up a trust to meet the DS adult's needs in perpetuity. I'd also like to hear from someone who has raised a DS child through adulthood and dealt with their growing sexual awareness and desire decoupled from knowing how to deal with those desires in a socially acceptable way. I'd like to hear from some whose DS teens or young adults are far larger and stronger than their parents, and who in some cases are violent. Andn then we should look into what happens to DS adults once their parents or caregivers die or can no longer care for them. Most end up in poorly funded nursing homes at taxpayers' expense.
I'm all for adults with Down syndrome working and even geting married, but starting a family of their own one day? What a terrible idea.
5
People with Downs can have non-Downs children.
1
Ella,
For the most part Down Syndrome is not inherited.
1
Of course choice means choice. Good for you guys.
And did you cost out what your son would cost the rest of us, and what resources would be diverted from poor, beaten, and broken children who did not have your resources?
6
I don't know Robert. What do YOU cost the rest of us? What do any of us cost?
Assuming that you're a man, you won't ever have to have the experience of choosing whether or not to abort a child that is alive inside your body - a baby you're already bonded to. One who is kicking and moving inside you.
Kaposy explained that his wife already thought of the child growing inside of her as their baby.
3
I've chosen to not have a child because I feel it would be unethical to bring a child here with no way to guarantee a happy life for the child. The child will certainly suffer in a badly designed education system, for example, and if it's a girl, will grow up to be sexually harassed at the workplace. And this is all I have to offer a normal child. The idea that one could ever wish Down syndrome on a child is monstrous.
73
Srinvasan--If I had it to do over again, I would not. The risks certainly outweigh the rewards.
5
I don't understand your last comment. Are you saying that allowing a child with Down Syndrome to be born is monstrous?
4
No 'wishing' such a child on, or forcing such a child on anyone, is, in this writer's opinion, monstrous.
2
Misguided sentimentality ('but he's our baby!") with society picking up the costs. Lucky for you Canada has a national health care system.
7
“... but, my wife, Jan, already regarded him as our baby ...”. In other words, it seems likely that the author, at the time the decision was made, would have prefered to abort. Hard to criticize others for making a decision you likely would have made yourself if your wife had agreed.
2
Better Down syndrome than schizophrenia, and there's no prenatal test for that.
1
I think it is cruel and selfish to bring a child in this world, who will be looked at, and treated differently than other kids.
4
"...we just need more people to choose to have such children."
You are advocating a choice that is not yours to make.
9
Thank you for your decision, Dr. Kaposy, and for speaking up. I have not had to face this condition in parenting. But just that Dr. Kaposy must speak of the possibility of allowing those with Down Syndrome to live reveals the barbaric, Orwellian reality behind the 'pro-choice' euphemism. It is wrong to abort a baby for Down, it is wrong to abort a baby for being a girl, it is wrong to abort a baby. I guess that makes me pro-birth, eh?
Yes, and your believe that's way don't have an abortion. Those who believe differently have the legal right to make other choices.
2
No,it makes you like many pro life people, a hypocrite. You associate aborting a child with Down's with aborting it for being a girl or too tall or small, but it leaves out that raising a child with Down's in our wonderful more and more Ayn Rand, Lord of the Flies society that pro life people support wholeheartedly, that the cost of raising a Down's child and then having to figure out how to make sure they are either self sufficient or taken care of when the parents are gone is difficult because the medical and support services are difficult to find and getting harder. Pro life people also are strongly correlated with the anti government/anti social spending types, whose basic answer is "have the baby, and then it is all up to you". If pro life people were serious they would be advocating for health care for all, support services for people with kids with special needs, but all they seem to advocate for is tax cuts for the rich and slashing social programs, basically saying they are pro life until the baby is born, then it is 'you are on your own"...
1
Amen! Now how about some of that “research” money goimg to improving the outcome ps for our kids with Das rather than just for prenatal diagnosis.
1
If you are pro-choice as you claim, then you already know that is up to the parents to decide whether to carry a down-syndrome fetus to term. Just because someone chooses abortion does not mean they do not value unconditional love. The problem is that most Christians don't understand how an abortion is handled by 'nature'. They don't understand that an aborted fetus is just scheduled for another later birth perhaps to the same parents or to different ones. The second time, the fetus may very well have a normal brain. So by having an abortion, you may be doing that 'soul' a favor and letting it avoid life with down syndrome.
4
this poster appears to believe in "reincarnation" in utero. If you decide to become parent, you need to be ready for all the struggles that life may hand their way--even if in your innocence you cannot envision being able to measure up to what you are being called to do. In utero reincarnation is an attempt to normalize aborting groups of people for superficial reasons. This is the expected result when 21% of pregnancies result in abortion. What's a few more?
1
"...Having a baby with Down syndrome may seem too demanding to some prospective parents...
Enough with the equanimity from the land of Tar Sands...
Perhaps you should have a biofinancialist weigh in...
We can revere life - we cannot afford to revere every life...
If you really want to be inclusive - invite an op-ed from a bioethicist from Iceland...
Or ask the author to list and rank the demands associated with the ten most profound diagnosable fetal abnormalities - and where he and his spouse would continue to term...
6
Everyone should have any child and any number of children they desire and they can afford and raise and provide for. If not, don’t.
3
The author is lucky to be Canadian, and thus doesn’t have the harsh worries of how they will medically care for their child now and in the future. That’s a terrifying and very real worry for Americans, to our shame as a culture.
15
If you have lots of money and can provide for your child with a disability after you are gone, that is one story. If you cannot, that is another.
19
Ethics is an instinct. We are born with a visceral sense of right and wrong. One of our strongest instincts is to take care of children. But children who aren't born yet - we have no instincts to cover that. We try to adapt the instincts we have. Do we call fetuses children and apply that instinct to protect unconditionally? Or are fetuses in the category of eggs and sperm. Could be a child, or not. Make responsible decisions about whether you can afford them and provide the best life for them now. Are you being a selfish thoughtless person by burdening the rest of your family and society with a choice you and they can't afford and creating a child who will be miserable? How dare you be so selfish? We tend to pick one instinct or the other and then overwhelming blind emotion dominates. WE ARE RIGHT! This is a fundamental instinct! How dare you be so unethical as to think otherwise? Rational discourse ends.
1
Such a selfish and cruel decision.
7
I've chosen to not have a child because I feel it would be unethical to bring a child here with no way to guarantee a happy life for the child. The child will certainly suffer in a badly designed education system, for example, and if it's a girl, will grow up to be sexually harassed at the workplace. And this is all I have to offer a normal child. The idea that one could ever wish Down syndrome on a child is monstrous.
5
You can welcome a Down's syndrome baby into your family.
I would not choose to do so.
It should be an individual family choice.
18
“If you value acceptance, empathy and unconditional love, you, too, should welcome a child with Down syndrome into your life.”
Ah, “should”. Not consider? Not could? I suppose the author may have been trying to be provocative. But I would have been a lot more receptive to the POV if it didn’t have that whiff of self righteousness.
17
Absolutely this. This article was preachy and smug. You chose to have a child with Down Syndrome. Good for you. If someone else didn't, that's fine too. I wonder why this bioethicist has decided (and why the NYT times gave him a platform) which pregnancies are ok to terminate, and which are not?
1
In this overpopulated, dying world the decision to have a child, disabled or not, is nothing but a act of selfishness.
8
The problem with the recent “don’t abort for Down syndrome” pieces is that they play to emotion: the love, the joy, our-enriched-lives, etc.
There may be truth there, but the writers ignore the harsh realities of the US healthcare system, the lack of affordable quality services for the disabled, and how the disabled person will be cared for after his or her parents have died.
The arguments used in pieces like this one are essentially emotional blackmail. It is deeply unjust to use emotion as a way of pushing people to enter into a situation that —- especially in the US —- has potentially ruinous financial and other challenges.
None of the “don’t abort for DS” pieces I’ve seen has addressed any of this. I don’t hear the pro-life or emotional-argument crowd lobbying for affordable healthcare or government-paid home health aides, or anything that would ease the burdens parents of people with DS face.
38
You have had a positive experience (albeit not a long one, 9 years is a fraction of a lifetime) but that doesn't give you the right to cast judgment.
My older sister has DS, she was born in 1980 before prenatal testing could tell. We love her very much but if there were a pill to make her normal every member of my family would give it to her in a second. She's 38 now and lives with my parents who are retired. She is difficult, smart and loving but a really stubborn person. My younger brother and I recently had to discuss our options in regards to her care should my parents predecease her. We agreed with my parents' suggestion that she spend 6 months with each of us and rotate so everyone gets a break. We don't know how this will play out but that is the plan for now. My parents struggled with the idea of having children after my sister because of the burdens it would put on siblings. Ultimately, they had my brother and I, I think having a DS sibling has made us incredibly empathic and tolerant but it is really hard. It always has been, I particularly was bullied as a child because of her. My 34 now and dread my parents predeceasing my sister and then I feel immense guilt for those thoughts.
My point in this rambling is your experience is not everyone's. You're too early in your journey to know the difficulties yet. The hard part starts really after high school.
If you're truly pro choice you would stop claiming your choice as ethically superior.
26
Bravo.
1
Congratulations on your much loved child. But, Sir, you've answered your own question. You're Canadian. Do you have any idea of the astronomical costs of raising a disabled child in the USA ??? Medical Insurance alone would be extremely expensive, maybe even unobtainable. Yes, maybe more people would prefer to raise a child like yours, but could never afford to do so. Their other children could be very shortchanged, now and in their future prospects. As in, NO College, etc. Just saying.
15
To everyone reducing this issue to the additional financial costs to the family of raising a child with DS, it should be noted that social security and related Medicaid would normally be available for medical and living expenses. All states have comprehensive special education mandated by federal law, which include residential services, to age 22. Many states have in-home and respite services available. My aunt's youngest child was born with DS, they lived in Mass., Florida, and Maine. My cousin lived at home as a child and young man, going to school and receiving special education services. When he grew older and wanted more independence, he lived in a small staffed home with other adults with disabilities and worked at a local market. None of this was paid for by the family. But if some commentators here object to the cost to society of people with DS, because our taxes pay for services we don't need our selves, I say people with no kids pay for the schools with their taxes without whining about it. Or saying that no one should have children because of overpopulation or climate change.
The Medicaid services available to the disabled vary by state. So does special ed, in spite of federal laws. Any developmentally disabled person whose IQ is over 70 isn't eligible for those services in my state. Our governor also specifically slashed special ed dollars and told cities if they wanted to special ed, they'd have to figure out how to pay for it themselves (at the same time he also slashed school funding so low that some districts couldn't keep their schools open for the full school year).
I'd like the NYTimes to do an article on what is REALLY behind this current, continual push to increase the population of kids with down's syndrome.
Seriously, it's near constant now between NYT and Wapo columns. Why? Who is pushing this narrative. Why down's? Please stop running so many op-eds that are pro-choosing to populate the world with mentally and physically handicapped people. We've heard it. Move on. No one is threatening your "right" to inflict down's on a human and bring that pregnancy to term.
Why don't you care about the resulting child who has to try and navigate the world handicapped and the burden and cost to families and society? Because you intentionally chose that for them and made the humane choice of abortion too difficult to attain?
15
Yes, about 3 weeks ago, WAPO had 5 articles in the same week, with George Will, and others, misrepresenting the country of Iceland, that "Iceland" had all but exterminated DS. (Was a bald faced lie, the country does not compel abortion in the case of fetal DS, it does, unlike the USA, offer free pre-natal tests to any woman who wants one.) In answer to your question, the effort by the ones who want enforced bearing of damaged fetuses want to get it all to SCOTUS, with the idea that ROE will go, under Trump's new RW judges.
5
George Will has a Down Syndrome child. I can understand, thus, his interest.
Once again a bioethicist has forgotten that human beings are mammals, and substituted subjective and reflexive value judgments in their reproductive choices. This is fine for them and their comfortable circumstances, but it won't do for everyone and their individual unique situations. Spontaneous miscarriage affects half of all pregnancies because of the health of the mother, the health of the fetus, environmental problems like war, drought, starvation, and sometimes for no reason at all. Abortion is a biological part of pregnancy, part of our being mammals, and can be presumably be a response to protect the mother from injury and death. Abortion is part of being human and religious superstitions should have no part to play in the practice of medicine.
6
About half of all human embryos are spontaneously aborted, usually before the pregnancy is recognized. From 50% to 70% of embryos that die in the first trimester (13 weeks) have abnormal chromosomes. Most autosomal aneuploids are spontaneously aborted. Only three autosomal aneuploids survive until birth: trisomy 13 (Patau syndrome), trisomy 18 (Edward syndrome), and trisomy 21 (Down syndrome). Babies with Patau and Edward syndrome die in early infancy. Only Down syndrome babies have a chance of surviving to adulthood. If we could prevent trisomies from occurring (by preventing the nondisjunctions in meiosis that produce aneuploid gametes), would we? This practice would be just as eugenic as therapeutic abortion.
6
The key point here is abortion. And this, in the end, brings the subject of our understanding of human life - from many points of view. You must also think of what you'll lose, if you decide not to be a father / mother. And you should consider the following scenario: your "normal" child suffers an accident or illness, and becomes a person with serious special needs, what would you do?
4
Thank you for sharing your story. What a difficult but loving choice.
2
Wow. Many of the comments below are simply horrifying. "Too expensive, my life, adult care, etc " as the basis to end the life of a human being that is perceived as a burden compared to other so-called "normal" people. Where will society draw the line on what is normal? There is a very long list of other "disabilities" besides down syndrome that carry as much, or more, of a burden - financial or otherwise - on individual people and society writ large. Given the views articulated by a disturbing number of posts, what is the rationale against aborting a fetus determined to produce a child with autism, mental illness, or even type 1 diabetes? Combine this attitude with "advances" in genetic testing that may soon pinpoint intelligence level, athleticism, and/or sexual orientation and it isn't a stretch to conclude many people who have posted would think all of the above are a legitimate reason to abort. This type of thinking is beyond even the Nazis. We are on a runaway freight train to societal suicide if these views take hold.
55
I have a variety of medical challenges, some of them congenital. Frankly, sometimes I wish I weren't here, because dealing with them saps so much of my physical, emotional, and mental energy.
You presume that all humans are glad we were born. Not all of us are.
I have chosen not to have children, partially because I do not wish to take the chance of passing on my not winning the gene pool lottery onto an innocent baby.
I don't think we're going to go extinct because humans will stop having children. And, if by our own folly (our impact on the planet, and choosing not to mitigate what we're doing to the oceans, etc.), or natural disaster (like what killed off the dinosaurs) we do go extinct, then I think the universe will do just fine (maybe better!) without us.
40
As much as you may say otherwise, there is a fundamental difference between an abortion based on athletic ability and one based on the presence of Down Syndrome. One is a burden for the rest of your life, socially, financially, and emotionally, while the other only determines if your child will make varsity. Many families do not possess the resources to care for a child with such diverse needs, and in a country like the US, there simply aren't the resources available to help. The decision to terminate a pregnancy is never an easy one and implying that everyone who chooses to do so is an advocate for eugenics is ignorant at best
40
There are indeed many disabilities that are “worse” than this one. The difference is, they are not easily detectable before birth. However, the biggest difference between your opinion and mine is that I know that I can trust women with making the right decision regarding having an abortion and I don’t need to worry that it is the “right” one.
33
This is way too glib and reminds me of the pro-lifers’ demented insistence on calling an inch-long fetus ‘a baby’. Here is the mirror-image of this: talking about a Down-syndrome individual as if he or she will remain a cute little baby their entire life. Babyhood is a small part of an individual life-span. It is unfair to doom your son to the life of diminished potential just because of your selfish desire to “have a baby”. Down syndrome robs the sufferer of the greatest pleasure a human being is capable of: a life of intellect. It has a host of physical symptoms, including early-onset Alzheimer’s. Why to create a sorely diminished human being? A fetus does not know it exists. A human being does. Are you ready for the accusing eyes of your son when he realizes what horrible inheritance you have burdened him with?
14
As the sib of an intellectually disabled (ID) adult, I have both sympathy for the writers' perspective, and a caution. ID is a monumental responsibility for parents and the entire family. Social support is slim. The dangers of predation and bullying are significant. The costs of supplemental care are huge. The commitment to caring for the adult child is complex and lifelong. There really are NO vacations from the responsibility. So the objections to proceeding with a Down's pregnancy not all about middle class perfectionism. This society has a deep animosity toward the disability itself, and often, individually, toward these vulnerable human beings. Parents and family need to understand that this has mixed impacts on the entire extended family. It's given me a huge insight into institutional bias (and its correlate, institutional racism). It's given me a wonderful relationship with many varieties of human beings. I have more compassion than many. But there is a deep cost, and the cost is real. Idealizing this kind of "xtreme parenting" in the early stages doesn't help others understand what they're undertaking. Before making this decision, a parent needs to talk to parents of adult children to understand fully what this sort of parenting entails.
25
Downs and Autism are broad spectrums with a massive difference in disability. The United States provides no support for the needs of these individuals.
It is nice that the author's child can express that he would like to be a veterinarian. I wonder what their thoughts would be if their child was not even able to sit due to a more severe form of Downs. That comes with a lifetime of 24 hour, expensive care. I cannot fault anyone who does not feel able to take that chance.
17
For a country that cares very little about health care for anyone, we are wrestling with just getting basic care. Sunday Times had an article about how in 2018 Black women are dying in child birth because of terrible care and we are a country who cares about babies. I think not. How in the world no matter how ethical we are- can we not look into the future and see that if something happens to the parents or family members these children are forced into an long term institution , very few companies, hire these young people for work and the ones who do are held up as doing the right thing. Unfortunately Apple, Facebook, good jobs aren't hiring them. . Who cares for these children when both parents have to work to make ends meet and they become ill.
For you and your wife this was the right decision and we are happy for you. You have the support system needed to provide a full life for your child. For the rest of us, abortion is not an easy decision nor is the decision for the child to have a life of constant obstacles, abuse, heart ache is either. The medical solution would be to find a cure, find a cure for Alzheimers,cancer,etc but that isn't going to happen in our lifetime because there is just to much money in research to have a result that can help people.
10
As long as the state stays out of it, I respect anyone's choice in this dilemma, no matter how the pregnancy is concluded.
11
Sam just asked, "But who will care for these children ... ?" In Dr. Kaposy's case, part of the answer should be the extensive Canadian network of support services - universal health coverage (most people with Down Syndrome have associated medical illnesses that require lifelong care) and universal extended parental leave to care for newborn children are the two that come to mind first.
It is no disrespect to Dr. Kaposy to insist that when we as a society ask people to make hard personal decisions that involve major risks, we also assure them of the support they will need to live with the consequences.
8
With pregnancy for our 2nd child, the doctors recommended prenatal testing due to the age of the mom.
We did not understand all the implications, but sure enough, they informed us of genetic markers for high risk of down syndrome and offered to counsel us about alternatives.
We thought they meant some medical treatment, but the counseling was abortion.
We looked at each other and said no way, that is our child.
We worried all the way until he was born. No down syndrome.
20 years later, he is a healthy, happy college student.
5
When you say that you believe in the right to choose, WHEN? And WHY? The issue is not a black and white issue as Ted Cruz on the one side and abortion fundamentalists on the other side make it.
Taking the life of a fetus is a serious matter. It is advisable on SOME occasions, but "advisable on some occasions" is not the same as there being a constitutional right to it for six months, no questions asked.
Some abortions are justified and some are not. Many European countries have faced up to this reality and limited purely elective abortions to three months.
But in the US we have a war between two groups of fundamentalists. The Supreme Court has sided with the pro-abortion fundamentalists (who call themselves pro-choice). But the others have not gone away.
And you will find that many of the angry pro-lifers voted for Trump. It is a strange choice, and I was not one of those who did vote for Trump. But it is an understandable choice. Pro-choicers need to understand that "winning too well" can be a form of defeat.
So I do feel dismay at the fact that the victory of the pro-choice group is so total. This is an issue which requires finesse and our judiciary prefer to use a sledge hammer when finesse is needed.
2
But who will care for these children when they become adults and the parents are incapable of providing it?
Plus the expenses of raising a special child costs much more than average, very often shared with tax payers, especially for education and medical care. There are many of these students that require one on one assistance in public school settings, which adds to already financially strapped or challenged systems.
This altruism is benefiting who exactly?
26
We are talking about post-birth beings: even in the warped world of Roe, that makes them PEOPLE.
Since when do PEOPLE have to be a benefit to anybody? People are self-justifying. It's not too distant a trip from this "altruism" test to ranting about the "surplus population" (although one might argue that the ranters usually should ask themselves whether they might consider if they are part of the excess).
1
The child. Persons are valuable just because they are persons.
Many replies are referencing the difficulties in preparing for the adult life of a person with Down Syndrome, especially once the parents die. What I haven’t seen mentioned is the fact that the vast majority of people with Diwn Syndrome will develop Alzheimer’s-like dementia in their 40s or 50s.
People with DS are on a functional spectrum. Some even have almost normal IQs (they may be mosaic Downs). On the other end, though, are kids who can’t talk or interact with the world, may have autism or severe autism-like functioning, are behaviorally difficult. Medical problems such as the well-known congenital heart disease and the less well-known intestinal atresias or Hirschprung disease, acute leukemias, predisposition to brain cancers, and previously mentioned early onset dementia are very real strains on families and of course significant suffering for the people themselves.
I believe in choice, but the fact that one family has a good experience doesn’t justify encouraging people to bring children into a life of predictable, potentially significant suffering. I personally would never choose to have a child with DS and I do think that’s an ethical choice.
40
The spectrum includes profound cognitive deficits, wheelchairs for mobility, tube feeding, a lifetime in diapers, hearing and vision loss, unintelligible or no speech, cranio-facial anomalies and chronic illness with little to no joy in life. It is vital that families know that theses are real possibilities and perhaps see, in person, what may be their child's outcome.
16
I was watching a program on TV last week that portrayed autistic children being reared in group homes. The things these children were able to accomplish was remarkable. Of course, they were high functioning young adults but it was so encouraging to see these young people being given a chance at an independent life. They had jobs, they shopped, cooked and cleaned and were not treated as though they had disabilities.
There are also high functioning Down Syndrome folks who can also lead independent lives. They contribute to our society in many ways and should not be considered a burden. I am a pro life woman who feels these people deserve a chance at life. They should not be aborted but more needs to be done to assist in their upbringing. More resources should be available to those who decide to have these babies. These parents should be commended and not scorned for their decision to give birth. These people have become an important part of the family and they are loved as much as healthy children.
1
Living an "independent" life means paying the rent, insurance, food, etc.
2
Wanting your child to marry and have a career and live independently isn't just about narrow-minded conventionality and the desire to replicate a perfect middle class life. Its also about the fear of bringing a child who may need life long support into a society that doesn't offer that.
26
Exactly. Can my disabled nephew, who has a IQ of 62, seizure disorder and ASD and cannot live alone - live with some of these middle class folks when his ONLY support system - his mother and me - die within the next 20 years or so? He has no place to go once we pass except at the mercy of the state system.
4
A friend with a Downs child is constantly at the doctor’s office or hospital because of the child’s illness. There is a very real (immense) financial and emotional cost to raising such a child which needs to be acknowledged.
30
You made a choice that you felt was best for your family.
Please stop trying to shame others into making the same choice. I get that people who are parenting people with Down syndrome believe that there would be more "acceptance" of the condition if more people chose to continue pregnancies after a diagnosis of the condition. But that's tremendously unfair -- not much different than the posters pro-life propogandists wave outside abortion clinics to try to stop women from acting on their rights.
Pro-choice isn't "you're free to choose, but I really think you're making the wrong decision and here's why." Pro-choice is "I recognize your right to make decisions about your body in all circumstances."
46
Actually, prochoice totally means you're free to think someone else is making the wrong choice. Prochoice is not about thought control.
1
Sharing one’s opinion is not the same as “shaming”. Please stop projecting your feelings of guilt onto this author and her opinion piece.
1
Freedom of expression is when you're free to think someone else is making the wrong choice. Prochoice is about the freedom to choose in reproductive matters.
I'm happy that you are happy with your choice. It would be nice if this article persuaded others to make the same choice and raise a happy child with special needs. The key word is choice. Some people do not have the wherewithal to make such a choice. That's why we have Roe v Wade.
22
A beautiful article. I am the grandmother of a four year old boy with Down syndrome. When he puts his arms around me and gently pats me on the back, it melts my heart. My son and daughter-in-law chose to have this child and have dedicated much of their lives to helping him reach his full potential. Fortunately, they have the resources to be able to do all that they do.
The truth is that not everyone is equipped financially or emotionally to handle the awesome responsibility of raising a child with Down syndrome, even parents who "value acceptance, empathy, and unconditional love," to quote the writer.
Forcing a woman to bear a child with Down syndrome can cause irreparable damage to both parent and child. Unfortunately, the Pennsylvania House of Representatives in its zeal to limit a woman's choice, just passed a bill to prohibit abortions based on a diagnosis--or even a belief -- that a fetus has Down syndrome. And the bill provides no additional services for children born with this condition. Clearly the state is not concerned with the child's welfare once he is 4, or 16, or 50, passing an unfunded mandate that falls squarely on the shoulders of the parents. I hope the PA senate rejects this bill and lets parents continue to choose whether or not to include children with Down syndrome in their families.
63
This is a lovely article but it only discusses birth and childhood and parenting. I appreciate you pointing out aging because so much of the conversation about Down syndrome focuses on abortion, right to life, and infants. I do not see politicians or churches uniting to ensure these same babies are safe and clothed and fed when they are 50 and I wonder if they recognize this need.
I challenge communities to search out and support programs for adults with intellectual disabilities. They still need food and clothes and shoes and blankets and toys...and safety long after their parents leave this world.
19
The people who write such bills are in reality pro-birth, not pro-life. Sad.
Thank you for sharing your experiences and thoughts with us, Natalie. I'm glad your grandson appreciates you.
17
One reason, to be blunt, is that Down syndrome costs money. I was born with some birth defects (not Down) and had to have several operations as a child. Fortunately they could afford it.
This happens on a society level as well. I suspect that one of the real reasons Democrats support abortion is that's cheaper than creating social programs to fix the real problems.
4
Oh, please, how very disingenuous! It is Democrats who propose almost all social programs, especially for children.
38
I believe it is the Republican Party that consistently defunds or underfunds social programs. That is the difference basic between the two parties. They want to end Medicare and social security and they just tried to kill the ACA.
3
I have a child who is developmentally delayed. At 10 he is like a 2 year old. Adorable in all ways. I doubt he will ever be able live on his own. Parents of these children, who we love fiercely, have one great fear...what will they do when we are gone? Who will be there for them? It is something to take into consideration if one doesnt have extened family or resources. However, this child is the light of our lives, as any child iften is to parents
25
As a single person, I unexpectedly became pregnant at age 39 - when of course the chances of having a Down's syndrome child are higher. I decided that, whatever, I would have my child: to do otherwise would be to dishonour close friends with significant disabilities and the community of people with Down's syndrome.
She doesn't have Down's syndrome.
But I am so very thankful to have had a choice: it means that I positively chose to give my daughter life, come what may - even though her beginning was quite accidental!
14
There is much thought and much concern for the living in the mix of the reader comments--calls for compassion, regardless of where one stands on this issue.
I wish all people discussing this topic were as respectful as most of the commenters have been.
12
I wonder how much of the civility on display here is due to the Times's policy of moderating all of the comments. I hear you, though.
Every child brings blessings. But not all Downs kids have a blessed life. I see a 'push' from many to have a Downs child. But my niece with Downs, at 30 , is not living a blessed life. She is not able to focus long enough to bag groceries, or shelve books. She is very depressed and suffers from bouts of mental rage. She has no real social outlets now and my brother and his wife are aging. She can't bear for my sister in law to be out of her sight. Up thru HS things were really good. She was mainstreamed. The kids at school really enjoyed her. But her mind started to fail after HS, yet she may live for some time after my brother and sister-in-law pass. People can have another child, a healthy child. Thinking of the child isn't only at birth, thinking of the future of the child is part of the equation. Watching my niece is a sadness, because she is sad.
72
I think of this perspective as well: what happens to a Downs child when they are not a child any more, and the parents are no longer living,and they weren't wealthy enough to provide some sort of nest egg for this child? All these articles seem to focus on the blond-haired, smiley child, but they seem short-sighted to me. What happens when the sexual hormones kick in later on?
2
Thank you for this thoughtful piece. If you have the means and will to care for a child with Down Syndrome, I am sure it will enrich your life and theirs. But in the U.S. we both shame those who choose abortion and, at the same time, refuse to fund universal health care - which would make the choice not to terminate such a pregnancy much more reasonable. In truth, I think all life is sacred. But I am pro-choice and will continue to be. A country that refuses to support universal health care is not pro-life. So many conservatives who want for profit health care would also limit a woman's right to choose. And they call themselves "pro-life."
31
Amplifying, not disagreeing: They are pro-birth, not pro-life.
4
Dr. Kaposy and his wife were free to make the choice that was best for them.Their choice wasn't forced on them. As a pro-choice advocate, all I want is for all mothers and fathers to have the same opportunity that Dr. Kaposy and his wife had: to be free to choose what is best for themselves. That's all.
41
Agree it still is a personal choice and should remain a personal choice. As the article notes, even with the availability of abortion, 33% still keep a fetus with Down syndrome. I would be interested to know the data as to whether those percentages are changing, given medical advances that can detect Down syndrome earlier and earlier. However, it is a huge commitment on the part of the parents and having lived in Canada, the support system in Canada is quite different than the US (particularly for health issues). We have no problem with any parent making either choice.
7
I value acceptance, empathy and unconditional love and would never presume to attempt to advise or tell another human being what to do in such a personal and private situation.
35
I appreciate your thoughtfulness. Many people are not inclined to "keep their eyes on their own plates," so to speak, when it comes to others' reproductive choices, it seems.
2
I am loath to say that more people who conceive babies with Down's should proceed with the pregnancies. I think many are motivated by the fear of what will become of the children once they (the parents) are no longer alive--a not unreasonable concern. You made the right decision for you and your family, so I hope you'll come around to trusting that others will do the same for theirs.
Best wishes to you and yours.
19
I understand this is a father declaring his love for his child, and I think that’s sweet.
However, I have a sister with two kids that are intellectually disabled who are now 17 and 18. My sister was adopted at the age of four after being severely neglected and she has disabilities herself. I constantly feel stress and guilt about her near-adult children being in group homes that aren’t great. But I can hardly afford my own house and my child’s $1300/month daycare. And I feel guilty that I’ve decided to have my own family at all.
If I were to knowingly become pregnant with a child with a potentially severe disability, I would definitely terminate. Maybe I would feel differently if I lived in Canada or Europe where the social safety net is stronger. And I would never try to force someone to make a different choice, but I do think it’s naive for a middle class or poor person in the US to think the government is going to help them give their child a good life.
It’s not about real estate ownership or or career aspirations or status - it’s about wanting my child to be happy and healthy even if something bad happens to me. And it’s also about giving my high-functioning son a chance to lead a happy life without having to care for a disabled sibling indefinitely.
I try to follow ‘the golden rule’. Would I rather be born in the US disabled (physically and mentally) or not be born at all? I’d rather just not be born.
66
This is a list of birth defects: http://americanpregnancy.org/birth-defects/
Where would prof. and Mrs Kaposy draw the line? If I were a Canadian taxpayer I would like to know why whatever school of bioethics is being promoted here trumps actuarial calculations - since most of these pregnancies, if allowed to be brought to term, will cost the medical insurance / special education / health care system an average of $10 million. Each. And of course cause untold suffering to the individuals themselves, a consideration oddly excluded from prof. Kaposy's calculus. I find the promotion of such ideas monstrous.
27
Down Syndrome covers a range of abilities and disabilities. Some DS people are very high-functioning and can hold low-level jobs and even live independently. At the opposite end of the spectrum are the severely disabled, those who require constant care and have little or no quality of life. Then there's the middle ground. And there's no way to know in advance. I grew up with intellectually disabled family members. Would I change that? No, of course not. Do I wish they'd never been born? Of course not!!!! I was guardian to one of those family members. But I do not romanticize or glorify the challenges, the heartaches, the health issues, and the financial cost of providing for special needs folks. It's fine when they're "kids," but adulthood is far more worrisome and problematic, and often not rosy. These decisions are deeply personal. I am a strong advocate for disability rights. I also recognize the importance of assessing the ethics of bringing into the world more people, period, regardless of ability.
39
Wow. It's too bad life is not as simple as we'd all like. It would make these decisions easier. In a world of almost 8 billion, where millions of people, especially children die prematurely every year and the planet is being ravaged by our exploding numbers, any decision to have a child is and should be a very well thought out and reasoned one. We live in a country, that at least at present, allows us to have these discussions. I fear, that in the future, as human life continues to be devalued by our increasing numbers, we may not have the luxury of this kind of debate.
16
Al - You're so right. I believe we're at a point that every child should be a wanted child, because as the population continues to grow beyond the planet's carrying capacity, we'll get to the point of deciding which already-living members of society we can afford to care for. (If you think about it, we're already experiencing a version of that, with Republicans deciding that health care is only for those who can afford it, and public assistance is going to too many 'undeserving').
2
I am a physician who treats many children with Down Syndrome. Perhaps my patient base is skewed towards the more severely affected, but what I am seeing from most of my Down patients is not all smiles and cuddles. Leaving aside the physical complications of the trisomy, there are higher rates of autism and severe aggression in this population. We all like to picture the success stories, like Chris Burke (who played Corky on "Life Goes On"), but his case is about as good as it gets.
I also want to point out that as far as genetic diseases go, Down Syndrome is practically the best that you can hope for. Those who want to restrict abortion rights should be forced to take a medical class where they learn about the myriad other genetic syndromes that make Down Syndrome look like a cakewalk.
136
Agreed! Forcing women to bear children they’re unable to care for without providing social safety nets is cruel and inhuman for the woman and the child.
10
We don't need "abortion rights" to solve the problems he describes, we need discussion about which abortions are permisable.
@Charlesbalpha: And who will decide for me what's permissible? Some stranger named Charles? No way.
2
I am not perfect. Are you? I find the current fascination with Down's Syndrome to be curious. It is not the only birth defect one can have. Why is it being privileged? If one can legally abort a normal fetus, why is there a question about one that isn't? Having said that, I made the explicit decision when I had my 3rd and 4th children at ages 35 and 37 respectively that I would have both babies even if they had Down's syndrome. Both girls, as it turned out, were normal. But, we went on to adopt 3 special needs kids. There was precious little difference in raising the normal vs. special needs kids--even the adopted child who is blind was remarkably similar to the "normal" kids. People fear what they haven't encountered. Conquering that fear is the first step on the road to acceptance.
11
Having an outsize dislike of the unpredictable is why I've chosen not to have children. I have enough trouble dealing with my "inner child"!
I don't resent kids, or the people who choose to have them, though. Being around kids and parents, and appreciating their different ways of looking at the world, has increased my empathy quotient.
What I don't have much patience for is the folks who've told me I'm "selfish" because I've chosen not to reproduce/adopt/foster. Who are they to determine that, and why do the ones who chastise me find my choices so threatening? (I'm not saying that you would do such a thing, btw, Susan! You sound like a good egg.) I guess I should focus on how supportive my husband and in-laws are, but people who criticize others' reproductive choices are hard for me to ignore. Do you have any advice for me about this, Susan? I am open to hearing about how others cope with such negative feedback, and I suspect you've gotten your own share of, "Why have you made the decisions you've made?" snark!
Best wishes to you and yours.
1
@Susan: There's a current push by the anti-abortion movement to pass laws in the states banning all terminations of Down syndrome pregnancies. It's just another ploy to block access to abortion. They've singled out Down syndrome rather than other disabilities because it provides cute little mascots like the one whose picture accompanies this article. Although he is now nine years old, the photo is of an infant. This is not a coincidence.
2
I respect parents to make the choice they make. However, if the end game is group home for the rest of their lives, I think that's very sad. It is also very expensive and most parents to do have a trust fund to pay for the expense of a group home.
25
Dr. Kaposy is a Canadian (a G7 nation) where there is socialized health care. His and his wife's decision was made easier because someone else will be paying for the lifetime medical care of their child. I suspect Canada will even be paying for residential care after the Kaposy's deaths or in the event that the child's Down Syndrome is do bad that institutional care is required.
55
I am raising children with special needs. We're fortunate to have the wherewithal (not only financially, but emotionally, socially, and knowledge-base wise) and health insurance to make our family situation work. However, I've known many people through parenting groups, etc. whose lives have collapsed into family breakups and/or financial ruin due to the burdens of special needs parenting in our society. While it's nice that the author had the means to raise his son, and of course we should treat all children well once they're here, we should never force anyone to take on these responsibilities.
61
He wasn't advocating that, of course.
My wife and I made the choice to terminate our first pregnancy after a down syndrome diagnosis. It was very likely we were going to only have one child, it was not anywhere within the scope of our plans and we had known several families who had crumbled under good intentions - but unmanageable stress. I had an opportunity as a young person to work in a support capacity for many DS children at a variety of ages - I certainly was exposed to the variety of family conditions/personalities that can result from the choice. For us it was too much risk for our relationship and home. We now have a 9 year old and operate as a very happy family. A difficult decision, but we both feel the best one for our family. I certainly applaud those who are able to make it work and continue to support peoples right to choose for themselves without judgement.
64
The title is odd here. I've never known anyone who would suggest it was not ethical to have a baby with Down syndrome. There may be some, somewhere, but people I have known have uniformly been quite supportive and kind to parents and children in this case. The author seems more to want to argue that it is not ethical to have an abortion if prenatal testing indicates the syndrome. He uses the term baby for a fetus, as well, a common misnomer used by those who oppose abortion and wish to twist the conversation in that way. I am happy that his family is glad of the decision, and wish them every good thing. But this is not an argument that is fairly made, and that is of limited help to anyone in this difficult situation or those who care for them.
36
I read it as more of a defense of his and his wife's decisions, than as an attempt to persuade others. But there's room to interpret it in different ways, of course.
I think the world would be a nicer place if people would refrain from criticizing others' reproductive decisions in the first place. It puts so many people on the defensive (as I suspect is true in the author's case). We really shouldn't feel the need to explain why we have as many children as we have (or don't have), and yet I've had people ask me, "So, how come you don't have kids?" too many times to count! Sometimes I just say, "That's too personal for me to want to try to explain at the moment," but I wish it weren't considered something it's okay to ask complete strangers at the bus stop!
4
" He uses the term baby for a fetus, as well, a common misnomer used by those who oppose abortion and wish to twist the conversation in that way."
jb has it backwards. Throughout history, pregnancy was described in daily life in terms that stressed future life: "having a baby", "with child", "expectant". Nobody but a doctor would use the term "fetus". In the past few decades abortion lobbyists have promoted the word because it sounds ugly and dehumanizing, just as the American government promotes insulting terms for the enemy in wartime.
1
Blue Jay, try "I don't like them."
That's always put a halt to that conversation for me.
My brother is just shy of 50 years old and has Down syndrome along with several physical disabilities. He is my only sibling and I am his legal guardian. My parents made the decision to bring him home after his birth against the recommendation of doctors and psychologists (this was the prevalent thinking in the late 1960s). He grew up surrounded with love and care from his immediate and extended family, and he continues to receive in the group home and work center my parents wisely chose for him in the mid-1990s. He has taught me much about what it means to work to your fullest potential, and I am very proud and humbled to be his sister.
I would encourage parents who have a child with Down syndrome along with other intellectually-able siblings to acknowledge and respect the challenges the siblings face in life outside the home. Kids can be incredibly cruel when faced with people who are different from them, and every day the siblings are tasked with defending their brother or sister with Down’s...and it can be physically and emotionally exhausted. The simple act of acknowledgement can make a huge difference for siblings who take up the role of caregiver when the parents are no longer able to do so.
19
Another serious risk for the siblings is parental neglect. When I was a child, one of my classmates had a severely disabled brother. Her father was always away working and her mother was exhausted from caring for the special-needs child, who took up all of her time. The other kids ran wild in the streets. They were like Dickensian orphans.
1
I don't know. I have two high school friends who had Down Syndrome children. When the going got tough, both husbands left. At 26 years old one of them just entered a group home. The other one is still on a wait list. These moms both had other kids too, and these moms struggled terribly - financially and emotionally - and they had very little to fall back on. Meanwhile, both husbands remarried, one failed to pay support, both have good careers, vacations, homes...
67
Sounds like many a typical family story to me ( sadly) even with any child!
1
"If you value acceptance, empathy and unconditional love, you, too, should welcome a child with Down syndrome into your life."
Well then, that means that people without the resources the good doctor has who choose to not carry a Down to term are somewhat less than human. The present anti-abortion Down support campaign is part and parcel of an overall attempt to stigmatize anyone who chooses to end a pregnancy, Down or otherwise.
I will point out that the good doctor is not in the country of free market healthcare. I hope the doctor has just a bit of compassion for a single parent who is not a professor but rather paycheck to paycheck worker.
I would expect that the doctor has set up a trust to make sure the Down child will be able to get the care and support for their lifetime. Most people cannot do that.
Who is going to care for those who are low functioning? What happens when the doctor and his spouse are no longer on the scene? What about divorce? Could happen, ya know.
It's ever so easy for those who are warm and well fed to make decisions for those in other situations.
85
The author wishes "more people would include children with Down syndrome in their families."
Why? Why, if it ever became possible, should we not have the right to choose the child we want? Wouldn't it be a safer and happier world if, for example, we could opt to not give birth to a Genghis Khan or a Ted Bundy?
No one can be disappointed or shortchanged if one more human somewhere isn't born.
24
Ted Bundy was adopted by his grandmother in order to hide the reality that he was the child of an unmarried mother. He was raised as his mother's brother. It is altogether possible that Ted Bundy's natural mother would have been declared unfit or feebleminded simply for having gotten pregnant, however she became pregnant. Many natural and normal mother/child bonds have been deliberately destroyed in this interest of "family values." this, of course, has little to do with Chris Kaposy's situation, but when I saw "Ted Bundy" brought up, I had to comment. Nikolas Cruz was also taken from his natural mother. Actress Loretta Young adopted her own child who she bore naturally as an unmarried mother. Stigma creates mental and emotional anguish and many so-called pro-life, anti-choice people are also anti-single mother. Fact.
1
This is exactly what "pro-choice" means. The family makes the decision.
Of course, there is the other side, where people have reported that certain families were not equipped to handle the demands of having a Down syndrome child and the result was a family torn apart.
But stressing that it is a family's choice, with all that entails, is the only modern way to go.
19
Thank you for this article. Beautifully articulated. I have a thirteen year old boy with Down syndrome and I cannot imagine life without him. “You will dream new dreams” was what I was told. And indeed we have.
13
I recommend reading "Flowers for Algernon". This should help understand not only the hardship handicap, mental or physical, creates for the caretakers of the handicapped but also, and more importantly, the suffering endured by the handicapped. But to each his/her own...
18
But in Flowers for Algernon ( the movie version was “Charly”), the cognitively disabled person didn’t suffer until after he had undergone an experiment that made him a genius, and then he slowly reverted back to his original state. He didn’t suffer in his original state..
Spoiler Alert: But the cognitively disabled person in the book didn’t suffer until after an experiment made him a genius and then he slowly reverted back to his original state. He was ok , even happy with his life before that.
Just saying that book is quite outdated. Ableist and condescending with god complex thrown in eh? You might try reading The Shape of the Eye by George Estreich for a more modern and non fiction perspective.
Children with Downs Syndrome cost 5 times as much to educate per year as the typical child. That is paid for by the taxpayer. That is leaving out their additional and often significant medical needs, which are far higher than average.
At the same time, the states that want to force women to bear children with Downs are consistent in cutting taxes and school funding. This would seem cruel, until you realize that their endgame is to keep women from the workplace. What a perfect way to do it: force women to have high-needs children and then provide no public support for educating or caring for those children. You've just put women back in the kitchen, and at no cost to you!
Of course people with Downs are often lovely. People who have the resources for that commitment are welcome to take it, and I won't object to my tax dollars being spent on the significant expense they have chosen to incur for the rest of us. But it is a choice that should be made based on emotional and financial resources, especially in a country as consistently unsupportive of families as ours.
110
Having empathy is great. People with Down's meaningful lives.
What happens when the parents pass? Who helps the person with Down's?
What happens if the parents cannot provide for their child? Who pays for that?
There are millions of poor kids in this country. There are endless needs for finite resources.
The real question is how can we provide a decent life for all children? The answer is that we have to be intelligent about the use of our resources- as individuals and as a society.
I think every parent should have the right to make this decision and the responsibility of meeting the financial expectations that come with their decision.
41
It all feels good and wonderful, however, a potential enormous emotional and financial toll on the families and communities is being ignored. Ethics are debatable here - would it be ethical to expect the other children in the family to care for a disabled person for the rest of their lives if such a possibility could have been prevented? Is it ethical to expect the society to incur exorbitant medical and educational expenses, since very few families can swing these kinds of expenses entirely on their own, if such expenses can be prevented? Is it ethical to consciously introduce preventable hardship and disruption into the lives of previously reasonably functioning families for the next many decades to come? The decisions here are very personal, people will make them according to their particular circumstances and beliefs, and should not be vilified for whatever choice they make.
50
Choice should continue to be the standard response.
4
The writer states: "Nonetheless, I wish more people would include children with Down syndrome in their families. For this to happen, we don’t need new laws; we just need more people to choose to have such children." While this is absolutely true (in the most mechanical of senses), there is much more that we need in our society to encourage anyone to take this choice.
First, we need to make sure that the parents can feel confident the child will be taken care of once they themselves have passed away. We do not, as a society, provide enough services to ensure this. We leave this to families, and sometimes it is unrealistic to expect they will be able to do so.
Also -- RESEARCH. One can't tell, with Down Syndrome, how bad it will be. Some children may be able to lead a pretty good life. Others may never be able to turn around in bed. No test can tell you that. No test can tell a woman whether her child will have heart problems, or mobility problems. People cannot plan for what they cannot predict.
Worse, ever since the Iceland story came out, I have found that these horrendous personal choices have become fodder for the abortion wars. Politicians in states with no-Down-abortion laws should also make laws mandating their state care for the resulting children. I'm afraid these are the very states that will not do so.
At the end of the day, for politicians and anti-choice groups, this is not about the children, but about the culture wars.
44
Many anti-abortion arguments are in reality pro-birth, not pro-life, and the politicians and others who go around spouting off about how women should govern their reproductive choices really wish only rich, married people would have sex.
5
The people who would ever consider aborting a fetus that has Downs, but is otherwise healthy, has clearly never known anyone with Downs. There are many, many diagnoses that would make me consider an abortion, such as the fatal Tay Sachs, or other illnesses that always prove to be fatal. Downs is not fatal, and people with Downs are the MOST joyful, caring people who contribute more to our world than most do in their lifetime. I've had the honor of knowing such folks, and wish there was more acceptance of them.
14
I think Deb describes an atypical ideal. I agree that we, and society in general, should be accepting of our fellow humans in all their diversity.
But, as others have pointed out, above, there is a broad range of disability in people with Down Syndrome. Those most severely afflicted do seem to suffer a great deal, and their parents are challenged (in several ways) beyond the ordinary. Raising any kind of severely handicapped child increases the likelihood of divorce and other family trauma. Prenatal testing can diagnose the condition but not its severity.
And, Down Syndrome isn't immediately fatal, but life expectancy is much shorter, and conditions that often accompany it (such as heart anomalies) require life-long treatment.
9
Teenagers with DS become sexually aware and very interested, without the concomitant ability to express it in a socially acceptable manner. Some DS teens and young adults, especially but not limited to males, are much bigger and stronger than their parents, and can be violent. And then when the parents die, the DS young person usually ends up in a poor-quality nursing home. There's a reason all the feel-good stories about DS feature cut young children.
4
Thank you for your testimony, it is important to have the point of view of an "insider" as down syndrome is not often depicted in the media and pop culture.
Yet, there is a kind of moral bias to your article that could have been better balanced : the diversity of situations, the financial capacities, and the available time vary from one person to another. Furthermore we have to take into account the country where one lives and its welfare system, governmental support, access or not to education, etc.
It also feels important to point out that there is currently a shift in the discourse about people with down syndrome that influences policy making. For instance, in France, a hair salon managed by individuals with down syndrome recently opened and has received so far positive feedback.
As a consequence, we believe that families that have chosen to have a child with down syndrome should be better accompanied, counseled, and society as a whole should be more inclusive to all types of profiles (down syndrome people as well as autism, etc). It would relieve the pressure on parents and give more autonomy to the individuals.
However we should keep in mind that people that would decide to abort, for whatever reason, should not be stigmatized but understood and accompanied too since such a decision is never taken lightly.
26
I respect the author's opinion, and maybe he and his wife are more empathetic than I am, but I ultimately would have aborted a fetus with Down's. I say this with the baby still inside, waiting to be born soon.
When planning to become pregnant I knew I was signing up for accepting the unknown in a way I haven't had to before. I'm willingly losing control of many aspects, I won't be able to control everything about my child.
But I can maintain control over some things of my situation. I would not continue a pregnancy with Down's or some other major anomalies. I do not have the bottomless empathy, or monetary and mental resources, to become a lifetime caretaker starting at birth. Again, I know that things are out of my control - who knows what may happen to my child where I do become a caretaker. But I can control this little piece.
70
24 years ago I had triplets. 3 boys. Iker, triplet #3, has autism and is mentally handicapped. I can not attest to what it is like to have a child with Down Syndrome, but I can to the good and the hardships that having a mentally disable son entails.
Everyone in our family loves and protects him. My children have learned to be compassionate towards others, because they have grown with Iker’s handicap. They are sincerely good people in part because Iker has thought them what it is to be different and not to be able to be “mainstream.” Iker in general has a good life.
But it is not easy, neither for him not for me as an older parent. His brothers are pursuing careers and have an independent future. He will never be able to go to university, to drive, to take fully care of himself. That is an everyday loss that we live with and it does not have to do with how much we love him. It is just his reality and mine. My life is complicated. At times I cannot work because his mentor decided not to show up or his program is closed. So my livelihood is affected. And then there is the uncertainty of the future. What is going to happen to him when I die? Will he be a burden to his siblings? Will he be alright?
I agree with the author that having a child who is mentally disable can be a joy and a great life lesson, but it is also dealing with daily grief and uncertainty. I know that if I didn’t have him my life would be easier, but I cannot imagine my life without Iker. It is just complex.
45
Doesn't work out so well for everyone. A life-long search for cognitive therapies with disappointing results, emotionally painful sacrifices imposed on siblings, and a premature death from leukemia.
Think long and hard before you make this choice.
After all, it is a woman's right to choose.
55
In the USA, there is not the same social support for these children. There are a range of severe medical problems Down's people can develop and most of them would bankrupt a middle class American family without health insurance, and even with insurance depending on the policy.
65
In America, children with disabilities are covered by a variety of state programs in conjunction with Medicaid.
Children should not be viewed as a financial burden for the greatest and wealthiest nation in the world.
People who haven't tried to find and access those "resources" assume there's all kinds of help out there. and then if thy ever find themselves needing those resources, they'd find how skimpy or unavailable those resources are.
1
You decision was yours to make and to be sure I am happy that you remain satisfied with it. But the question you ask..why don’t more people do what you did ignores the realities with which most people live. No health care, jobs that don’t pay well and the demands of an economy that requires two working parents just to put a roof over a family. I would suggest that you consider that other people’s choices are just as ethical as yours.
90
The author is only nine years in. Best wishes to him, and his wife, for the next 60 years, but let’s have some compassion for women without the resources to spend the rest of their lives caring for a disabled child in a country without an affordable medical care system.
174
The author does not address the challenges of living independently for those with Down Syndrome depending on severity, the expected diminished lifespan (60 years), challenges in care while growing up, etc.
36
This shows the professors singular, narrow thinking. Not every family has the financial means or physical/emotional time to take out of their careers to raise a child with Downs. Isn’t it unethical to bring a child with Downs into the world simply for parents gratification? It is the parents choice, and what they feel is right for them. Parents with Downs don’t always have support from families, friends and community they need.
58
I've re-read this multiple times. At first it seemed pretty benign but then the discomfort came on. Discomfort because though this is a dualistic choice, it is not a dualistic issue. There is no right or wrong here. Hooray that you have the education, the resources, the patience and an intact family to be able to make this decision. But those who choose otherwise are not making a worse or less ethical decision. Society is not better with reductionist reasoning. Simplifying a heart wrenching decision in this way creates an illusion that your decision, on balance, was the right one. It was the right one for you, something VERY different.
60
I assume that Down Syndrome, like most conditions, is a spectrum. Your son, who sounds lovely, seems to be fairly high functioning. As the parent of an adult son who is severely multiply impaired, I've often thought a high functioning Downs child sounded like a walk in the park. My son is not able to communicate even his most basic needs. He cannot toilet himself, get a snack, chew very well, or initiate an activity. If your child were not as high functioning, you might feel differently. That said, I'm glad you enjoy him and that he has a loving home. Good for you, truly.
99
Thank you. I have never been confronted with that situation, but though pro-choice I am pretty sure I could not myself abort a child with Down Syndrome.
People with Down Syndrome have a range of functioning with some able to hold jobs, live independently (or mostly so), and even marry. Others, however, are much lower functioning and will need life-long care.
What has always seemed hardest to me is not childhood, but images of quite elderly adults around town with an aging disabled child, the increased difficulty of caring for that child as one ages, and the worry of what happens to her after the parent dies.
39
There should be, and there are, facilities that can handle the lifelong care of children and adults with disabilities. Parents need not be saddled with a lifelong obligation of caring for their child with a disability. Non disabled children leave home eventually, either to college , the military, or a job. So should the families of disabled adults be able to be "empty nesters" also. We need facilities that can do the care and the government should help.
5
@Tom Boyd:
"...and the government should help." I agree with that. But you can bet, here in the United States, that those state that outlawed the the choice for terminating a pregnancy due to Downs Syndrome did not at the same time authorized any taxpayer assisted funding for providing funds for facilities to care for those that need it.
37
Such facilities do exist, but I think that a cognitively disabled child continues to seem like a child to these parents, long after their typically developing siblings are gone. They keep their adult children at home because they remain vulnerable and dependent.
5
It might not be out of place to mention how testing for Down Syndrome (DS) has changed over the years. The earliest involved obtaining fetal cells through amniocentesis. This involved some risk and was generally only offered to older women. The cells would then be grown and their chromosomes examined under the microscope.
In 1984, the late Dr. Harold M. Nitowsky of the Albert Einstein College of Medicine noticed an association between low maternal serum AFP and DS. I was employed in this lab for many years and assisted in some of the statistical work for the original paper. Elevated AFP levels were then known to be indicative of neural tube defects such as spina bifida. Other researchers found DS links to additional substances and a mathematical formula devised to determine a risk factor combining these results. This is known as the triple or quad test today.
The resolution of ultrasound examination was fairly crude in the 1970s. One could detect the position of the fetus, of interest in amniocentesis, but little else. Today, many things can be detected such as neural tube defects and DS.
The debate over pregnancy termination when genetic defects are found has been around since the invention of the tests. We know that conceptions that do not survive until term, a majority in some estimates, very often have genetic abnormalities. Genetic testing often allows parents to consider having other children after having one with abnormality.
16
Professor Kaposy entitles his article "The Ethical Case for Having a Baby with Down Syndrome," and then proceeds to speak about feelings. Now, while I think Hume may have been right to suppose that reason is always but a slave of the passions, there is really nothing in this article that reflects an ethical point of view. Basically, he is saying: "We knew our child would be born with Down Syndrome. He is a happy child, and we are proud of him, notwithstanding the fact that he will never grow up to be what he wants, so everyone should make the same decision."
Well, I have news for him. This is not an ethical argument or case. It is simply a claim that a child with Down Syndrome may provide his parents with good experiences, and may have good experiences himself.
However, the contrary case is also being made in that stunning conditional" "If he could grow up to be anything ..." But other than having a human pet, why Dr. Kaposy wants other families to welcome a Down Syndrome child into their family is not explained. He fails to notice that his Down Syndrome child is already privileged, and that to many families the commitment needed is more than many people could either provide for or afford (in time, worry, or money spent), not to mention their aptitude for such commitment.
Dr. Kaposy may be a bioethicist, but in his article ethics is merely spinning its wheels. I hope he has more than this to offer his students.
173
"human pet" that is the perfect wording... I kept thinking if I wanted this life I would get a dog. The reason I want children is that it is a biological urge and the objective is for them to be self-sustaining, impactful members of society. I want the intense nurturing parent-child relationship for 18 years and then a natural progression of mentor/parent, and if lucky enough someday, grandparent. Parenthood is a choice and a huge sacrifice.
18
Sarah, it's better to want children because you think you have much to offer them as a parent, than to fulfill a desire for a close relationship with a child. People who go into childbearing with very clear expectations for how their children will be tend to have trouble recalibrating their expectations to the reality that kids' personalities and desires can often be oppositional, rather than in accordance with, their parents'.
And many young people are returning to their parents' homes after college nowadays, too.
I'm struggling with writing this, because I believe firmly in people being able to make their own reproductive choices, but what you've written here sent up some red flags for me. You may want to rethink your assumptions about how parenthood will go for you.
No matter what you decide, I wish you all the best.
Dr. Kaposy did not write the headline. I read his piece as a defense of his and his wife's choice, and some wishful thinking, rather than as a pronouncement of what others should do. Your mileage may vary.
4
Practiced nursing for 45 years, some of it in pediatrics, and was fortunate enough to have 2 children, one with special needs. You would not know that this child was different, still faces challenges but it is always a work in progress. The thing about parenthood is this, no one knows what they will "get" when a woman becomes pregnant. You "get" what you get and hopefully you are enough of a parent to accept the child that comes and love that child and do your best for it. You just love it, sometimes with tough love, but you pour your love there. There are no guarantees, there are no perfect babies, but then the conundrum is that they are perfect babies, they are just what came and it's our job as parents to do whatever we can to make them successful and happy. Sometimes it's more work than we thought but we cannot give up. The life we made is ours to guide and help regardless of what we are handed. Being a parent is not easy on any terms and sometimes we are handed tough stuff, does not mean we walk away from the tough stuff, it means we gather our selves to work for the best for that child no matter what the issue may be.
10
Well said. Parenting is unexpected and challenging, but we chose to bring our children into this imperfect world, and we bring our own imperfect selves to the table to love them.
2
The thing is, these days you have a better idea of what to expect ans with prenatal testing it is not a surprise when a child with Down is born. Parents can have that information and choose not to continue the pregnancy. It is one parenting challenge they won't face.
1
By whom "are we handed" the child, Ms. Fish? Is there a someone or something making the decision?
Wouldn't the parents of any of the world's monsters -- the serial killers, the rapists of babies, the fearsome dictators -- have chosen not to give birth to such creatures if they had had the choice?
It's not walking "away from tough stuff" if science allows us to choose to abort before it becomes tough.
1
Dr. Kaposy's reflections are beautiful and important. Sadly, they do not go far enough. Does not the child with Down's have an unalienable right to life? Shouldn't that right be protected from the beginning when it is most vulnerable?
4
Until viability a fetus has no no rights that supersede a woman’s right to not be made an unwilling broodmare.
6
I base my assertion on the fact that it is at conception that the unique genetic code of a unique human being is present. This uniqueness will continue to develop until natural death, so long as as the unborn receives proper care and is not destroyed. Upon what do you assert the right to destroy this human life?
Whoa - "If you value acceptance, empathy and unconditional love, you, too, should welcome a child with Down syndrome into your life." So does that mean that people who choose otherwise are not accepting, empathetic, or unconditionally loving? Clearly you have the financial and personal resources to be able to parent a child with a disability (whether that turn out to be mild or severe, one wouldn't know from only a diagnosis). Also you are Canadian, with more allocated societal resources (though not educational protections). Others are not so lucky. With a fraying social safety net, people who are living in poverty, in rural or inner cities without access to resources, or already at their limit facing personal or societal issues, their experience of parenting a child/adult with Down Syndrome would be very different from yours, and could well be to the detriment of themselves, their family, and loved ones. People know what they can handle. No one I know who has terminated a pregnancy because of the possibility of a child with a significant disability has done so lightly or because they wanted the perfect child. You should show the same compassion and nonjudgmental attitude toward those who make this choice as you do toward your son with a disability.
118
The writer also fails to mention that some with Down syndrome are very low- functioning and require round the clock care. I am very familiar with the various ways DS presents and have a friend whose sole job in life is caring for his severely disabled DS daughter who is now in her 30’s. She has to be dressed and helped in the bathroom, she has to be sedated to have medical care, etc. She is nonverbal. She can never be left alone. He worries all the time what will happen when he’s gone.
68
The piece is judgemental.
3
People with Down Syndrome have their challenges, and so do the families that raise them-- but they are also some of the happiest, most joyful people I have ever met. The world is a better place with them in it.
8
It’s important not to generalize about DS people. Not all are joyful or happy. Let’s not romanticize.
4
Challenges. Wishy-washy word for difficulties. Or horrors.
A mother -- perhaps single, perhaps with other children -- who might not have enough to support her family, might not think of having a child with Down syndrome as a challenge. She might not console herself with the thought that "The world is a better place with [Down syndrome children] in it."
Her world isn't happier at all.
2
The deep contradictions that are so well discussed in this article are exposed by a sentence that I found disturbing:
"If he could grow up to be anything..."
So, even such brave and loving parent cannot avoid facing the sensation (maybe a fear but not really a possibility) that his child could grow up to be...nothing!
I found this sentence to be in shocking contrast with the rest of the article. Was it deliberate or subconscious?
9
So could all birthed children? I know a few that are criminals, some that have had their lives interrupted by illness, accident, drugs. That is the risk of all parents eh?
It becomes a different scenario entirely as the child ages.
If this essay is about "ethical choices" (which is clearly is) then there has to be a discussion of that person who is not a child; who reaches sexual maturity; who will likely be in nursing home or assisted living by the time he reaches 40. And there is not a discussion about that. I respect the parent's decision but have they thought everything out completely? The essay suggest otherwise.
50
There’s no “ethics” in this piece despite its label. It’s an emotionally-driven celebration of one family’s choice with strong criticism for those who choose differently.
60
And at the same time, the arguments hold. What, for instance, is wrong with assisted living? And, if for some reason a community sees fit to place adults in nursing homes just because they need support in the activities of daily life - that should be the issue, not Downs syndrome in itself. We should focus on that community and work to improve its practices. And what the problem should be with people with Down syndrome reaching sexual maturity, I can't even begin to imagine. Inclusion means diversity, and diversity means accepting that valuable lives come in many shapes and forms.
1
As I mention in response to Mr. MacDonald's post, don't blame Dr. Karposy for the title ("label").
Thank you for writing this piece. Let’s continue to work to build a society where everyone is cared for and valued and people don’t have to be fearful for their disabled children or fear for what will happen if they are infirm at old age.
6
I'll go out on a limb here, and say there's not much wrong with people with Down Syndrome. Of course, 'wrong' is so loaded a word in this context, so full of subtext and received wisdom, that it becomes whatever people want it to mean. Sure, Down syndrome is a medical disorder, But some of the most beautiful people I've met have had the condition. What's the argument for terminating them in utero? I'm pro choice, but I'm not sure I'd make that one.
4
a web search will tell you that most with this syndrome develop a form of early-age dementia and then require assisted or nursing home living thereafter. There's a reason you dont see many with this syndrome in their 50 and 60s -- they have already passed or they are in some form of assisted living with dementia. I didnt know this until first hand experience. Many dont know.
43
Do you have a child with Down Syndrome, Tansu? Let the woman whose fetus has been diagnosed with the abnormality choose whether or not to abort.
Let her choose whether or not she wants to give birth to a "beautiful" child with "not much wrong."
1
I would hope that readers, regardless of their perspective on abortion, read and reflect on the experience of the author of the gift of Aaron to him and his family. Clinical analysis, economic prospects, and musings about rights and obligations do not plumb the depth of what he is describing. They exist at the surface of the debate. If we are to ever come to meaningful resolution of this issue it will occur as we bring the energy of empathy and compassion into the conversation.
3
"They exist at the surface of the debate."
I agree with your sentiments that parents have the right to choose. But your sentence above is impossible to agree with. Information and facts matter when making big decisions. Bizarre to think otherwise.
8
Aaron was a "gift" from whom, Mr. Welch.
Why is there a "debate" at all, here? If a woman wants an abortion, she should have a right to it. If she is denied that right in the case of Down syndrome, then she can be denied -- at some future point, no doubt -- the right to terminate for any other anomaly science will be able to detect.
How many people do you know, sir, who have wished for a child with physical or mental disorders?
1
If you value not judging others until you have walked in their shoes, don't read this column.
17
My husband and I adopted 3 special needs children from foster care into our very stable home. Our children came with financial packages and Medicaid and my husband’s very good job provided the same. And yet the burdens were enormous, almost insurmountable. My birth son loves his sibling but lives in terror of being left their guardian. Our society is in no way prepared for a growing generation of the disabled and we move backward more every year. Love is NOT enough.
134
The author's argument almost had me until this:
"If you value acceptance, empathy and unconditional love, you, too, should welcome a child with Down syndrome into your life."
As an alcoholic in recovery for nearly 8 years, I have all but eliminated the word "should" from my vocabulary, particularly when it comes to judging the actions of others.
74
I value acceptance, empathy, and unconditional love. I also value quality of life for my children: by this I mean care, education, housing, and meaningful work. Having visited centers and long-term facilities for children and adults with developmental disabilities, I could not in good conscience consign my own flesh and blood to these places once my husband and I are no longer of this earth. The issues of poor care and abuse are very real. Until the pro-life, or in this case pro-acceptance/empathy/unconditional love groups dedicate equal energy to talking in real terms about how and where developmentally disabled children live in their adult years; until they begin working to ensure quality of life from start to finish regardless of the country or state they live in, I shall remain staunchly pro-choice. Which is, in my view, a pro-life stance.
143
Very well said ... the issue is not caring for the child adult while a parent is alive (although you still must have the means to do so), it is about what happens to that person after the parents are gone - if there is no money for their care, there may not be a real life for them as adults. I would not have wished to spend most of my adult life in a facility, so why should I want that for my child. Making a choice to not have a down syndrome child may in fact be the more caring and compassionate choice - at least until such time as the resources (money, health care, educational options, etc.) are in fact made available for these individuals.
20
All Good MI:
Thank you for your realistic approach.
1
I dispute that Canada is a mecca of social supports. As these programmes are provincial there are great variations in funding. BC had the 2nd lowest teacher pay and there had been severe underfunding for over a decade. Social services again varies but child welfare is generally inadequate. In BC seniors care has been privatised. There is provision for the poor but not lavish. The meals can be disgusting. There is a shortage of nurses and physicians. Many nurses are working in the US on NAFTA visas because they make more money. Ditto for pharmacists and pharmacy techs.
Europe supports their social programmes by much higher taxation.
The author is writing from Newfoundland which has a huge population outflow and consequently huge funding problems for all programmes. That is I cannot see great support for the handicapped or availability for advanced medical services.
13
It's all in where you stand. This is a US paper. From here, the worst program in the most backwoods town in the poorest province looks impossibly generous.
1
Love is not the scarce resource for some families. There will be plenty of love, and acceptance. But it is still a major challenge for the family, especially siblings, to have a special needs child. One has to think of the other siblings, in their forties, dealing with families of their own and aging parents as well as a disabled sib. Can I put those responsibilities on them?
51
Unfortunatelly, Down syndrome often comes with other congenital defects (West syndrome, Hirschsprung disease -- to mention just the most frequent ones), and so parents weigh in that risk too. The decision is not to have a child with DS, but to have a child who suffers at least from DS and will require at least the care people with DS do (rosy scenario).
28
the subtle undertone of this piece is the heartlessness of abortion. I could not disagree more. Would I want to live my life in a body like that: dependent on the world/others for wellbeing and life, or would I prefer to be reborn into another more well vessel. . . I choose the later.
47
a confusing comment. Are you suggesting that the aborted ones do NOT go to Heaven? Or that they go straight to Heaven after aborting? Either way, your comment is unsettling. The whole point of this article is that the parents had to make a choice and it wasnt an easy one and they made the choice that was right for them. Choice seems irrelevant to you.
1
The "subtle undertone of this piece" is NOT the "heartlessness of abortion. It is the value of choice and being able to view other people's decisions in a different light, with empathy and sensitivity. Please do not willfully misunderstand the meaning behind this essay in order to promulgate your views.
2
I'm glad this Canadian couple are enjoying their child, and feel positive about the future. But I'm also offended that they don't mention the very real burdens for many families, of having a special needs child.
I'm guessing this family has enough financial resources, government resources, and friends and extended family, that they aren't living 24/7 with a lifetime of worry.
76
As a longtime high school teacher, I was impressed when a student with Down syndrome enrolled in my class. The class centered on child development, and the student I will call Liz was a delight. She came to class early, took her seat, took notes and attended carefully. Sometimes the teacher is the student, and Liz taught me that Down's syndrome is not a one-size-fits-all category. I lost rack of Liz after graduation, but I bet she is still attending closely, and doing her job carefully, whatever she chooses to do. Her parents should be proud.
5
Who will care for your child when you die?
Are there other children in the family that will accept a lifetime of responsibility for an intellectually challenged child?
If your first child has Down’s Syndrome, will you now have more children hoping one of them will care for their disabled sibling?
Are you wealthy?
Can you provide “enrichment” experiences and full time supervision for your child?
Will you be able to find the time away from your job to advocate with the local school board to make sure your child will receive the best education your tax dollars can provide?
Can you get time off work and still keep your health insurance because you’ll need it to pay for the physical problems that often manifest themselves in Downs afflicted children and adults?
Just asking.
3
I'm unnerved by the consistency of these comments. It's hard to imagine how the essay could have been clearer about choice; it asks only for consideration. Commenters seem offended at even being asked. No one here seems to take mental disability rights seriously in the least, or in the least entertain the possibility that the shape of life imagined here to be good, normative, rewarding, etc., may not really be the universal standard, or even the best for oneself, as taking another standard deeply in could show. Being asked to consider that seems upsetting. That's quite a self-condemnation.
17
Disability rights are civil rights. There are people in parts of the world who make decisions to abort based on similar arguments - that their child isn’t what they wanted, because their child is female. I’m prochoice, and being pro choice means supporting all choices, including the right to have a beautiful young boy with DS.
41
I hope you also support the rights of parents to make a different choice from yours. I trust your son brings you and others much joy and will continue to do so.
Right there with you, Ellen!
Kaposy and his wife are willing to take on the care of their child for their entire lives.
That's not a choice I believe most people would make, sacrificing their own eventual independence from and even future dependence upon a child.
I cared for my mother for years after my father died. Had I not been capable I can barely imagine what hardship and loneliness she would have endured.
20
People with down syndrome are often able to live independent. In California the state is mandated to help individuals with disabilities (onset before 18) for their entire lives and support them to be independent. Supported living is an important civil right for those individuals. Comparing someone with an intellectual disability to the elderly, while flawed, can make an intetesting comparison if your basis is simply people who,may not be able to become fully independent. Do you want to live in a society that cares for the elderly with dignity and respect, or would you rather ignore them or choose not to have them. We typically choose to house the elderly in supported living, with nurses and caregivier who check in on them, but they are and should be given options for independece suited to their abilities. People with down syndrome are each unique just like typically developing kids, and have a far brighter future than your elderly adult comparison.
5
You are correct that those with trisomy 21 are eligible for SSI and MediCal. SSI is approximately $750/month - one can only imagine given the housing crisis in California that it might be very difficult for those living on $750/month to secure independent living. Most live in group homes, which vary significantly in the quality of care provided to residents. For those with trisomy 21 born into families of less financial means, life will remain a struggle.
2
You have GOT to be kidding me, "in California the sate is mandated to help individuals with disabilities for their entire lives and support them to be independent". Yes, that's what the law and the mission of the regional centers say. The reality is quite different. Regional Center support for an adult means nothing close to providing help and support to be independent. If the services are there, fine, however in most counties, resources for the regional centers, just like for other human services, are scarce. If parents/family have the financial and personal means to provide an ongoing loving and supportive life to a person with lifelong disabilities, that is wonderful. In my case, it would be horrifying to have a child I love be dependent on governmental resources to provide them with a life of dignity.
2
I'm glad these parents kept the child they wanted and they were able to do that. I just as strongly believe that a woman should have the right to an abortion if she wants it, regardless of the reason, including fetal abnormality. I think a big fear for people is not necessarily raising the child but what happens when they grow up, especially once the parent dies or is unable to care for them. The fears are real and the horror stories are out there. Also, the writer has the support of the free Canadian healthcare system, as well as family and community support. It makes a huge difference when both parents want the child and are in it together, which is not always the case. Americans and many other people have to cobble together care, whether it is fighting for the insurance to cover the care or to pay for the high medical costs out of pocket, to the point of serious debt and financial strain. There are so many factors involved. You have proof of making the right decision for your family in your son, but that is YOUR happy outcome. Others have to be able to make theirs without state of medical interference, with respect to their privacy and life situation.
29
LaFronde: The family does not really have "proof" of making the right decision. The child is only 9 years old. They need to wait until they, the parents are in their 80's and wonder what will happen to their son who may want to be a veterinarian, but will never be one.
23
Exactly. The harder part of parenting will be when you are 60, 70 or in your eighties and having to deal with it all. Those of us who have disabled adults in our household(and we are entering our seventh decade of life) see the realities every day.
1
Sadly, up to 50 - 60 % of those with trisomy 21 develop dementia in their 40's - 50's. Imagine the predicament of parents in their 80's caring for an adult child with dementia.
1
I appreciate your “pro-choice” attitude. I know a couple of people with children with Down Syndrome. I also know someone whose son became brain injured in an accident, and is in many ways similarly handicapped. The greatest concern that I see is about what will happen if the child outlives the parents (not a given) - who will care for the child? Will he (the children I know happen to be now young men) be independent enough? Will their siblings be over-burdened? Will the government-subsidized independent living facilities be adequately maintained or will they be neglected? These are no small concerns.
44
This is such a private matter, such a private choice, that I question the making of a public statement about it.
Maybe here is a better way to paraphrase the ethical choice. If you are upper middle class or richer, maybe you should consider having your DS child. Because you can afford all the care they will need, and all the resources they will need as an adult for the rest of their lives after you are gone. Unless you have other children you are okay with making that choice for as well, as they will need to take up your cause for you after you are gone.
Love does not conquer all problems. Whatever your choice is for yourself, that is the heartbreak you are courting for your DS child and their siblings. Maybe it is all worth it, even in the end. And maybe it isn't.
Like I said. Choices don't get more personal than that.
41
I respect your choice, Dr. Kaposky. However, all of your arguments are based on what you and your wife think/feel. You have not considered Aaron's thoughts or feelings. Unfortunately, there was no way to know them while he was in fetus and you had to make the choice. Therein lies the problem of this situation of "medical advancement." You made a choice on behalf of your son too with the knowledge that he would be born into a society that views his health as less than "ideal." Is that ethically right? I do not know but I wish the article addressed that point too.
I agree with your underlying sentiment that we should progress to a society where everyone is treated equally, no matter their abilities.
The other aspect is a family's financial capability and support structure. Not all prospective parents may have the privilege you probably have in making this choice.
17
Would you say the same thing to a parent with a child who later develops depression? If you have friends with children with down syndrome, or have friends yourself that have down syndrome, you might know that they are as complex and unique as children who are typically developing. Most of them would choose to be born, just like those of us with other struggles would also choise to be born regardless. If your argument is saying he can make that choice because he is middle class, are you saying only middle class people can afford to have children? While thay might be true in many ways, it doesn't have much to do with down syndrome. Children with down syndrome can be relatively healthy and do not require much more or less money than other children. If you are talking about long term, in California we have the Lanterman Act which mandates that the state support those individuals to live independently as adults. I do agree that we as a country need to support all adults with intellectual disabilities to live independently, and not all families have state resources to help them. I would point out that many typically developing children grow up to live with their parents, and point out the need to business owners to hire people with disabilities so they can live independently.
4
The issue here is the knowledge ahead of the birth and the choice to abort or not. I am going to assume that what you are asking is if we advance medically to the point that the doctors can predict with certainty that a child will be depressed as an adult and will lead an unhappy life. If that is what you are asking, yes the ethical question remains the same.
I did not say only privileged class should have children. What I was suggesting is that when you have a special needs child, under-privileged have a harder time providing those special needs and if they recognize that they will be unable to provide appropriately for a child who will be born with Down Syndrome and decide to abort, isn't that an ethically correct choice?
Since the article is headlined as "The ethical case....," it should have addressed these ethical questions as well is my point.
This is the downside of certain technological "progress" where it makes ethics even more complex than before.
2
I have a brother with Down Syndrome. He lives alone, has a job and experiences everything life has to offer. He is a joy. Does anyone ask to be born? What about the child who struggles daily with depression? What about the child who gets in a car accident? They are all loved. This father is just providing us with his family’s example of love. To ask him whether his son asked to be born is a cruel question
6
I suspect that lack of support has a lot to do with why parents choose to abortion a child with birth defects. My youngest cousin was born with disabilities and he was a burden on our family because there wasn't a lot of state help nor were there online communities where parents could support each other. My aunt was forced to become a stay at home mom and the stress of caring for a severely disabled child along with her older daughter eventually led to a breakdown. The family did our best to help, merging households so there would be three parents and three older kids to help out but eventually the family unit fell apart. My aunt and uncle divorced, the older kids resent our parents because we sacrificed our childhood to help with our disabled sibling. He's still not able to care for himself but we're too burnt out to do more. He gets some assistance from the state but our family isn't a family, the stress destroyed us.
Please don't judge those who recognize that they don't have what it takes to bring a disabled child into this world. Choice means families don't have to go through what mine did. If the government isn't going to provide adequate social services for families raising a disabled child then accept that abortion will continue to be the most common sense choice for many families. We can't keep caring more about fetuses then we do about the families that raise them after they are born.
129
Down Syndrome: Prenatal Risk Assessment and Diagnosis
Down syndrome (trisomy 21) is the most commonly recognized genetic cause of mental retardation. The risk of trisomy 21 is directly related to maternal age. All forms of prenatal testing for Down syndrome must be voluntary. A nondirective approach should be used when presenting patients with options for prenatal screening and diagnostic testing. Patients who will be 35 years or older on their due date should be offered chorionic villus sampling or second-trimester amniocentesis. Women younger than 35 years should be offered maternal serum screening at 16 to 18 weeks of gestation. The maternal serum markers used to screen for trisomy 21 are alpha-fetoprotein, unconjugated estriol and human chorionic gonadotropin. The use of ultrasound to estimate gestational age improves the sensitivity and specificity of maternal serum screening.
https://www.aafp.org/afp/2000/0815/p825.html
8
Fair enough. Here's the ethical case for having an abortion. Imagine being a child born to parents who believe that they had no choice but to have you, but it would have been better had you never been born. There are many such children, not necessarily with developmental issues and there are plenty of parents who are not up to the task of raising them. Imagine a single mother. Or somebody who suffers post partum depression. Or a malignant narcissist like our President.
36
Postpartum depression is treatable.
Jean, it's treatable but imagine someone who initially wanted an abortion but was denied. Then imagine that the baby has serious health issues.
1
It seems to me that here in the United States, our culture promotes a "survival of the fittest" attitude. And as a consequence, we lack an effective social safety net, such that many of us can't even afford decent healthcare. And so, when raising even a perfectly healthy child has become very stressful, what do we expect people to do, when a child is likely to have disabilities? I think it could be argued that in this circumstance, abortion might be the most ethical thing to do, in order to minimize the suffering of all parties involved. And I take no satisfaction in making this argument, only sadness.
28
You made me wince, because the description sounds so similar to some of the Nazi language about those who were viewed as handicapped or deformed from perfection.
That is perhaps the bitter reality of selecting abortion, not adoption, if one rejects the possibility of such a child.
I find it ironic that Kaposy would suggest that the choice to abort reflects middle class values. If anything, Kaposy's desire to express easily consumable, semi-humanistic values, "acceptance, empathy and unconditional love" is a middle class aspiration. This desire certainly has nothing to do with the child in question.
14
Chris. I applaud you for writing such a tremendous article about abortion when it comes to prenatal fetuses that have been diagnosed with some sort of genetic disorder. To start, I come from a family that has long been rooted within the liberal moral compass. I affirm that abortion should be left up to those whom it affects, but I commonly think that those who slander the pro-choice perspective do not understand that an abortion is something no one person, or family wants to endure.
When it comes to a fetus being diagnosed with a chronic illness as serious as Down Syndrome, I believe that the choice of abortion is a sociocultural issue. I hate to make vast generalizations, but having a child who has Down Syndrome is both a very timely, and expensive disorder that unfortunately a lot of people can not afford. It is a very harsh statement to say, but I unfortunately believe that if a child can not be brought up in a world that is set-up for them to succeed, whether it be them having a stable parenthood or receiving the care their genetic disorder requires, then it is best for both parties that there be an abortion. It is equally as unfair for that child to endure a life where they are set-up for failure.
Without question, if you and your loved ones can moral and financially support a child who has any form of a genetic disorder, I believe you should do so. But I think this issue has a lot of complicated strings that are attached to it that we have to account for.
26
And because it’s hard to be black in America should black children not be born? Because women’s lives are less lucrative? See where I’m going? Social change doesn’t occur in a vacuum. People with differences have rights and value beyond contributions to society. You are not speaking like a social progressive you are at heart speaking like a eugenicist.
I have a young adult child with a congenital condition that is usually much, much more disabling than Down Syndrome (1 in 250 conceptions, I in 10-20,000 live births, and most who survive never walk or talk). She is very "high functioning" for someone with this disorder, being able to drive and have a part-time job, one not designed for a person with a disability.
Her intelligence scores are within the normal range, but she will never be able to live completely on her own, as she has significant weaknesses in addition to her very real strengths.
I refused amnio before she was born, because although we are pro-choice, we chose to have our baby no matter the outcome. At the time, very few disorders were diagnosable prenatally, but now most of the children with her condition are diagnosed on unltrasound. We, however, didn't get a diagnosis until she was 17, though we knew something was a bit off well before then.
We are now in a retirement for 3 (she works two days a week, 4 hours a day, during the school year). Someday we will be gone and her brother will be her support. He and his wife will be doing so willingly. We have built up a special needs trust, and she is able to draw SS on my record, so there is money to support her.
But the wonderful thing about having a choice is that it is a choice. No one should be forced to have any child. We need to take the "should" out of this and let families decide these things on their own, with the best information available.
50
The author leaves out one powerful reason that couples may choose to abort: Pressure from their doctors. When I was pregnant with my now 10 year old daughter, a blood test showed that she had a higher than normal likelihood of having Down Syndrome. My doctors pressured us to have a somewhat invasive test (CVS) that would confirm or deny the presence of Down. When my husband and I declined, saying that we would have the child regardless, the doctor seeing us that day urged us to reconsider, saying we would probably change our mind if we knew that the baby indeed had Down. This squares with the experience of other women I have spoken with. As it turned out, our daughter did not have Down Syndrome. But I remain troubled by the assumption that anyone facing such a pregnancy would choose to abort. I am fiercely pro-choice, and to me that means not only the choice to have an abortion, but also the choice to give birth to a disabled child.
7
Why not do the CVS test so you can prepare to support your baby, no matter the diagnosis? Not everyone who receives a Down syndrome diagnosis would abort, but many would want to learn more about the condition before the birth.
4
Well, I worked with kids with Downs syndrome during my high school years. Nice kids, but they were in a regional center, because their parents could not deal with them.
Would I want to ever have a child with Down's syndrome? No.
But to all parents who do, blessings.
36
I strongly believe that neither the choice to have a child with Down syndrome, nor the choice to abort a fetus with the condition, is the correct one in all cases. I think it is a very personal decision that only individual prospective parents can make, knowing and respecting their own natures and circumstances. Only they know if they can adequately raise and love the child they are giving the gift of life.
However I strongly support the right to write and publish discourse in favour of bearing Down syndrome children such as this. Thank you Chris and The NYT.
13
The author is the parent of an infant with Down Syndrome, and it is far too early for him to evaluate the wisdom of his and his wife's decision. The author hasn't yet had the experience of raising Aaron, much less continuing to care for him long after Aaron has reached adulthood.
It is true that, dedicated parents can sometimes help their children with Down Syndrome to reach self sufficiency, but some people with Down syndrome are never capable of becoming self sufficient, no matter how good their care. And people with Down Syndrome now typically survive beyond age fifty.
Some parents say that caring for a child with Down Syndrome has been a rewarding lifelong experience. Others regret their choice. I would like to hear from both groups and especially from parents whose children with Down Syndrome children have already reached the age of forty or fifty.
17
When I was a recent graduate I worked for a nonprofit, providing care to older adults living at home with disabilities, like DS. What I learned was that no parent can evaluate their decision to have a child with trisomy. Because they will never see what happens to them after they die. The clients I worked for came from upper middle class families. They inherited property. They had trust funds. They had siblings who'd been tasked with continuing their care. They hadn't slipped through the social safety net. It didn't matter. The processes of aging, losing loved ones, and dying are hard enough; they are unbearable when you have neither the autonomy nor the intellectual capacity to confront them. My clients weren't graced with any intuitive wisdom about these things. They were scared, angry and confused. This was only compounded by the fact that even very high functioning DS adults can rapidly lose cognitive function after the age of 40, for many reasons that we don't understand yet. At the same time that my clients were losing parents, they were also losing verbal skills, memory and executive function.
40
No, the author states that the ultrasound indicating Down's Syndrome was almost nine years ago. That makes his child 8 years old. It is still too early to evaluate raising him to adulthood, but quite a significant amount of time raising a Down's child.
7
As a matter of fact, the article states that their son Aaron is now nine years of age, so they are well beyond the honeymoon of parenting an infant.
I think one reason families are hesitant to raise a child with Down's Syndrome (or other significant medical problem, for that matter) is financial. Who will care for the child when the parents are gone? Where will she live and how will she support herself? Perhaps in Canada there's less fear than in the United States that a child like this could easily slip through the cracks of our frayed social safety net and wind up destitute, or worse. I imagine that if this weren't a fear then a lot more families would be willing to welcome such a child into their lives.
26
It's not just finances. It's also about the high level of work and attention a child with Down Syndrome needs from parents, the effect of this on other siblings, and the possible need to provide lifelong care.
34
A missing piece of the discussion is that Down syndrome does not just impact cognitive function. The author’s own child was identified due to cardiac defects. These often require open heart surgery — or surgeries — in infancy, childhood, and adulthood. People with DS often have significant gastrointestinal issues, including Hirschprung’s, which requires an ostomy. And endocrine issues, especially hypothyroidism and diabetes, are more common than not. So while I support a family’s right to continue a pregnancy or not, DS is not just about cognition. You are choosing to have a child who will likely need major surgeries, painful treatments, invasive procedures, and challenging medical conditions that are difficult for anyone to manage. That continues throughout the lifespan, which is significantly reduced in people with DS.
87
This is true and absolutely was part of my decision to terminate my pregnancy. Secondly, my husband's youngest brother had DS and my mother in law supported us 100%.
103
This issue is a complicated. Some people can handle a potentially mentally or severely disabled child, while others cannot. Regardless of our born mental and physical conditions, numerous so-called normal folks will find themselves physically or cognitively impaired at some point in their lives. No matter if our babies are so-called normal or not, all parents are concerned with how that child, who is now an adult will fare after we die. The bottom line is that regardless of if we are pro-choice or anti-abortion, others ought not judge child rearing decisions, made. Never forget but for the grace of God or our maker, whatever name we provide that individual, go you or I.
I caution lawmakers not to intervene lest those states be burdened by stock piles of disabled infants, who may never be adopted. I remind people of the orphanages found in Romania, filled with unwanted & disabled infants.
So-called normal babies & children require a generous amount of time, love, kindness, patience & parental energy. Not every couple or single parent are prepared to give that necessary level of care. If you have ever interacted with foster children who are adolescents, one sees their pain & realize the level of care an infant through adulthood individual actually needs.
I commend the Kaposy family's commitment, wish them well & thank them for a truly thought provoking editorial. The Kaposys seem to understand one knows not what life will bring. Life's real adult choices are hard.
1
And in the US, it will very possibly bankrupt you.
6
My mother in law had a Down Syndrome baby before it was so named. She told me that she would have had an abortion if the anomaly had been detected before the baby was born. This baby grew up loved and loving, very well adjusted and highly functional. However the stresses on the family began at the birth and continue to this day, sixty-plus years later.
38
I feel a connection with this author and appreciate his article.
With my first pregnancy I pushed for all the diagnostic testing to ensure a genetically near perfect ideal of a baby. Then soon after his birth, I realized my parenting style was meeting my child where he was in his development. My open mind and the embracement of unconditional love allowed me to freely waive all diagnostic testing with my second child. She too is perfect. Although now I face sharing her childhood with epilepsy. The condition has left me even more empathetic to others and that is a win-win for society. Life is sometimes not about the path you choose. I am now more open to change, and I learn from an evolving process of supporting my child and preventing myself and others from limiting her ability to define her success however she defines it.
6
I applaud the author and his wife's decision to keep and raise your child, but not everyone is equipped emotionally or financially to follow your example. There is an emotional drain raising a child with a disability and not all marriages survive. Financial issues arising from medical costs can also burden and cripple a couple.
The very sad story from the commenter with a DS uncle shows the burden placed on siblings after their parents passed away, and illustrates that not all families can handle the issues arising from the care of DS person.
There is tremendous guilt, either in the form of 'whose fault is it?' or to the decision to abort. It is a very personal decision and belongs only to the couple making it.
24
This is exactly what pro-choice means - the right to decide yourself what is your ethical view of the world and what an agonizing decision like this thoughtfully requires. Thanks to Chris Kaposy for writing this and for doing so within a pro-choice framework.
31
Except for that last sentence, and that last "you too, should welcome ..."
Except for that last sentence. There is no "should" about choice, except that there "should" be one.
Thank you for your beautiful piece. The loving way you describe your family is exactly what my husband and I envisioned for our baby at 8 weeks in utero. We were told my blood tests came back wildly abnormal, and that it's like our baby has a chromosomal abnormality. We decided then and there that we would keep the baby unless he would face a lifetime of suffering. We researched Down syndrome and other possibilities, and we fell in love with our baby even more. It was surprisingly easy to abandon all our dreams of grandchildren, etc. However, our son turned out to be anticlimactically typical, but a chimera. He is six years old and tells every one he is his own twin.
The last sentence--though I agree with the sentiment, stood out to me. Dr. Kaposy is Canadian, so I do not fault him for not mentioning the astronomical costs of raising a child with Down syndrome in the US. I wish the last sentence reads, "If you value acceptance, empathy and unconditional love, you, too, should welcome a child with Down syndrome into your life, if you have the means."
18
No one has mentioned the effects on the older siblings of an impaired child. Parents are finite resources. When one child requires a lot of attention and support, the others have to make do with less. I believe we have a very significant responsibility to the living children already here that should also be factored into this decision /choice.
47
I have a six-year-old daughter with DS as well as a "typical" nine-year-old daughter. I'll mention the effects on the older siblings- pretty much all positive. Luna, our older daughter, does not feel unduly burdened by Ruby in any extraordinary way. She is no more frustrated/exasperated/burdened by her younger sibling than any other older sister or brother would be. Meaning she gets tired occasionally of being followed around, overly-adored, and having to share her things. Other than that, they are great buddies and playmates. Right now they are both curled up in Ruby's bed together, even though Luna has her own bed (top bunk).
Luna knows Ruby has DS, but it's just a label to her, I believe. She knows Ruby goes to more doctor's appointments than she has to, and Ruby's language abilities aren't up to par with her kindergarten classmates, but other than that... no big deal.
Studies have shown that children who are exposed to other children with disabilities tend to develop a better sense of empathy for others than those to whom "disability" is an abstraction.
To equate children with disabilities as being a burden and a drain on older siblings is completely wrong, and it is part of a disappointing stereotype that perpetuates our society's treating them as lesser beings.
Having known Ruby for going on seven years, I think that in many ways people with DS are superior to us "typicals".
10
You've obviously done a great job raising both your daughters. However - this is NOT how all families experience a "special" child and your children are not yet grown and facing the very real responsibilities in front of them.
My sister is developmentally delayed and my parents made clear to me from a quite young age that I would be responsible for her. That expectation has greatly influenced my relationship with her and my own life plans - and certainly not in all positive ways. It IS a burden - not only has she obviously outlived my parents but may also outlive me, yet the responsibility remains.
Disability is not an "abstraction" to me or to my sister - it is far too real with many hurdles you have only BEGUN to face - and your "typical" daughter as well. Your marathon is far from over so don't claim your trophy quite yet.
4
Siblings of children with Down syndrome are more empathetic than average. It's not a drag on siblings.
I respect the author's choice, but not sure why we all need to be told about it. This just comes off as sanctimonious and self-indulgent. Seems fair to say people could disagree on this one, and I can easily see both sides of the argument. Not sure I've gained anything by reading this.
35
I don't think the author is trying to "convince" anyone to change their thinking or align their's with his. It doesn't matter what the odds are of any medical condition, be they one in 10, or 1 in a million. When it affects you, you're the 1 and that's all that matters, whether it's you as an individual or a couple. It can leave one feeling all alone. People delude themselves into thinking that they actually have control of their lives. Our recent MVC in Canada , which resulted in 16 players and staff killed and 13 others hospitalized for their injuries (2 still in critical condition and 1 a paraplegic) only shows how false that belief is. There's a lot of things that paralyzed hockey player will never do again, but there's a lot of things he will do and places he may go, that he never would have experienced, if he'd never been injured. I think that the author IS saying that if you're willing to step outside of your comfort zone, you may enrich your life in ways you never would have imagined, and learn the truth behind the saying, "It's in giving that we receive". Or not; it's your choice.
7
I would be more interested in the honest feeling from someone who has assumed responsibility for a Down syndrome family member for a lifetime. nine years is nothing.
3
The comments here are running in a strange groove. There seem to be more of the so-called "pro-life" folks warning us not to forget that Down syndrome babies are a pack of trouble, and yet the pro-choice folks are somehow responding with indignation that this guy wants to take their choice away from them, and remember how much it will all cost, etc. Did everyone miss where he clarifies (repeatedly) that he's pro-choice? He is not trying to tell you to have a Down syndrome baby or any baby.
9
Well but yes he is. Advising us to go out of our comfort zone etc.
1
I couldn't agree more. Seems like pro-down's/anti-abortion trolls for whatever lobbying firm does that kind of work. I'm not buying it.
1
No.. he's not. He's just telling us that if we value empathy and acceptance and unconditional love, we should. He's telling us that if we don't, we are blinded by our selfish desire for perfection. So what's the correlating position? That if we don't choose to have a child with Down Syndrome, we do not value empathy or unconditional love, and we preference "perfection" over the life of a child. That if we do abort, we have the wrong values.
Is it the same as a bill forcing women to have babies against their will? No. But it's poorly reasoned emotional manipulation that really deserves no place in the NYT and adds nothing of value to the discussion about this complex issue.
1
This piece did not discuss ethics; it discussed the author’s experience. I am not at all sure that there is an ethical case for knowingly bringing to the world a very disabled child when there are so many perfectly healthy children who live in abject poverty, even in this country.
37
The author is an Ethicist. He is plying his trade. He lives in a society that while similar to the United States is different. He lives in a different culture with different behaviors and laws. He teaches University. So has all of the community support systems available to a professor. This person was speaking of ethics (his stock in trade) and may be totally out of touch with reality on the ground for a family in De Moins.
People should certainly do as they choose. But if you really think that the world is richer with more people with disabilities in it, shouldn't we be using genetic engineering to create more genetic defects?
16
It amazes me how people would not only impose a severely impaired person on society at large but on their other children with measurable difficulties parsed out for all. This article assumes available resources (financial and emotional) when these are in short supply (or completely unavailable) for those in lower income brackets. There are so many reasons not to bring such a being into the world it’s shocking to me that anyone would advise it under any circumstances.
I would absolutely abort any fetus with serious health issues with no compunction whatsoever and feel deeply grateful to be able to know such fetal conditions in advance and spare them, myself and everyone else the suffering such a birth would cause. I would not consider anything else truly ethical.
If you are rich and have a well of money large enough to provide lifelong professional and personal help you can assure, and are unable to understand the proliferation of harm you are doing by being such a person into the world, then by all means have a kid with huge problems. If you aren’t and don’t then please think of everyone else who will be footing the “bills”, especially your other kids who will be caring for them when you can’t any longer.
39
Thank you RachelK for your refreshing realism and honesty.
1
You expressed my sentiments perfectly. thank you!
1
This was a wonderful essay on the ethical dilemmas would be families are facing. One can check for a number of genetic variants with just the mothers blood at less than 10 weeks gestation. This will only accelerate as genetic test is being fully automated.
What if there is a genetic test for homosexuality?
How about criminal behavior , drug addiction, alcoholism or even child molestation. Would the public demand an explanation and even shame couples for their choices? I predict year 2030.
As a physician I feel there must be a God who created this wonderful Earth with all its complexities good and
bad. Would he condemn me to suffer if I terminated one of His human creations? These are my fears perhaps founded in superstition. I have no recommendations only fear of what the future may bring.
2
I’m very glad you made your choice. I respect that. I would have made the other choice, and I expect you to respect that too. And I expect our government - and citizens - to allow each of us that right to choose. What’s right for you would be very wrong for me.
27
I commend the authors of this article for sharing the views and feelings that prompted them to make the decision they did to have a child with Down syndrome. I am increasingly concerned, however, about enhanced genetic testing and the impact on future decisions about abortion. Where will society draw the line? Will other disabilities, such as autism or even type 1 diabetes, be “legitimized” as the basis for abortion? What about intelligence level, athleticism, or personality traits? As an example, would the pro-choice movement be as comfortable with the decision to abort based on a future genetic test that showed a child would be homosexual?
8
Whether people should make which choice or not is not this articles point. It is simply that there are people who have chosen to have and cherish their child that happens to have Down syndrome, want to share their understanding that our children are more than just the sum of our own fantasies and expectations and that the idea of perfect children is a myth that can affect unnecessarily the choices pregnant families make.
Make your choices but based on facts and wisdom not fear and ignorance. Maybe health care will be more maybe not..... there is a huge range of abilities and healthiness within Down syndrome. There are indeed some strengths that the syndrome adds. Perhaps finances need careful planning and saving as some parents do for their children anyway..... perhaps a parent may need to be more socially aware and involved with social justice issues like inclusion and disability rights....ideas around Controlling social and interpersonal outcomes based on ableism smacks of bad science, ignorance and the roots of eugenics.
2
I used to work with Down syndrome children and to a person they were delightful. But as they grow up they are rarely able to realize adulthood, to shed the vulnerability that defines childhood. You can talk abstractly of ableism, but in a society that does a dismal job of caring for our most vulnerable with tragic consequences, having socially aware parents is beside the point when they are gone.
21
We have children to reproduce ourselves. Is that simple notion forgotten? And we do it in a way that is ethically viable, so for instance we don't steal a baby or force a woman who does not wish it to carry.
If you are satisfying a "want" I suggest you get a dog or other object you can own. You don't own your children, you are responsible for them. The job is difficult enough without the added strain of a youngster who will not then reproduce themselves, or earn a living, essentially a dead end. Would the author be against wiping out Down Syndrome were it possible? That helps direct the question.
I don't commend the author for their decision nor do I decry it, but it seems irrational and it's demonstration in a story seems motivated by attention seeking. I advise any young person to ignore this example as offbeat at best, a quirky indulgence of PC behavior at worst. Have a normal healthy child if you can, and you can, by aborting a Down Syndrome fetus asap.
11
I have worked with many of these folks and it's a real struggle for families to deal with. It's not saintly to keep such a child; it's slogging away with maintaining their existence.
It must be the right of parents to do what they need to do, and not be told they're copping out.
36
Many commenters are asking "But what if you outlive your child?" or are noting that raising a child with a disability is usually a huge financial cost (and time cost) to the family.
These are very valid concerns. But where is our imagination? Why is everyone calling for abortion (which I support, legally, at any time and for any reason), and no one calling for greater assistance to families raising these children, and to the children themselves, once they become adults?
We're a wealthy nation. We can afford to help every one of these families. We forget this because so many of us are struggling. But we are struggling because we do not have a government, or a culture, that truly values equality. Every single one of us that's struggling to make it right now--someone out there is saying, "Yeah, but forget about them. They're hopeless. Stop wasting money on poor people/old people/sick people--save it for someone worthwhile." Can we please stop saying this about each other?
19
Maybe when all the current children are cared for and educated, we can worry about intentionally increasing the population of unhealthy offspring.
1
Abortion "at any time and for any reason". You sure? As in Any Time?
I want that society too. But I also look clear-eyed at what America actually IS. And for all the beating our breasts about our holiness and specialness, our culture is actually pitiless and petty, mercenary, and very cruel.
I'm glad there are people like the author who make his choice and I understand those who do not. However, it is far more than "not meeting the expectations of a middle-class life". It is the prospect of near-complete responsibility for this "child" for the rest of his and your own life as a parent. And the very real concern of what happens after you are dead - who do you entrust with the life of your vulnerable adult child? Your adult child who may no longer (if he ever did) exhibit the innocent, child-like, amiable, and pliable characteristics that help balance the other hardships to be faced? When you can no longer even care for yourself, who cares for your child? A sibling? An aunt or uncle? Some other guardian when it is difficult enough to trust a family member?
There are no certainties in raising any child, but the statistical probabilities are clear and should not be underestimated.
21
Not everyone is as far-sighted as you and your wife. Not everyone has the resources to care for a child with Down Syndrome. Many are not emotionally equipped either. I wonder how many such children are adopted or even abused. Life is hard. Being a parent is hard. Allowing women to choose is easier.
A child with the syndrome was cast in "Call the Midwife." There were lessons for all of us in his performance. We have come so far. Humans are basically good at heart. Right?
3
I respect your decision, but you have a number of factors in your life that not everyone does - 1) you live in Canada, where you have free healthcare. 2) you sound like your family has resources. 3) you are well, educated, and I'd assume your wife likely is also. 4) you sound like you have a very stable relationship.
For a family that may already be living closer to the edge, raising a child with a lifelong disability may be more than they can handle financially and/or emotionally. Unless we as a society can develop the will to entirely support these families and the individuals, after their parents have passed away, we should never look down on anyone's decision to terminate.
27
How about no. How is it fair to the child? This is more of a plea to satisfy an uncontrolled ego than bettering the lives of the disabled.
10
CANADA has a strong safety-net of national health care and social work to assist all families. This is quite different than “every man for himself” Trump care. Down Syndrome children are often very pleasant, loving, easy-going people. There are other birth conditions that are far, far worse.
10
It is very important to get ahead of any insinuation that a woman who chooses an abortion is doing something either immoral or unethical. The men who put forth such demeaning theologically-based hokum are psychological terrorists of women. There is NOTHING immoral or unethical about getting rid of some cells, especially when they can control your life for 20 years going forward.
It needs to be stated; A legal abortion has no moral negatives associated with it that are not artificially generated by some outside agenda. In light of that, it is our responsibility to not only defend abortion, but to encourage it.
Women and girls should be made to understand that being rid of an unwanted pregnancy is as free and easy an option in their lives as changing the color of their hair. In that respect it ought to be, for unplanned pregnancy, the default choice. Women and girls who find themselves pregnant without planning it before hand should hold abortion as the rule, and carrying to term the exception. In light of that it's the very rare case who accepts the tragic roll of the dice that is Down Syndrome.
22
People also abort Downs babies because they cannot afford the therapies, assisted living, etc in a society where such individuals are not provided for with public funds. Properly caring for a disabled child can financially ruin a middle or low income family.
34
The reason I would consider abortion of a Down's fetus is because, having taught sped kids, I know the fear their parents face as they get older and realize they may well die, leaving their child on its own, unless they have other children or family who will devote themselves to their sibling.
16
We can expect that a professor of bioethics would be well positioned to not only provide a stimulating environment that nurtures the possibilities their Down’s syndrome child can realize, but also to provide for the very expensive care needs this child will need after parents are gone. Your son won the lottery on this level. Of course, it helps that Canada has a safety net that has not yet been torn asunder by punitive and regressive little men with power. The majority of those born with this syndrome are not so lucky in this country.
13
I'm a conservative but I cannot support non freedom to choose.Does not mean I don't vote straight ticket Gop, what it means is how important is it to have offspring with insurmountable debilitating diseases which are incurable?
4
If you vote straight ticket GOP no matter what their beliefs on abortion then you are in fact supporting non freedom to choose.
1
Ask yourself that question again when you vote your straight GOP ticket. You have some cognitive dissonance going on.
1
How many people does this earth need? I have great kids, must have fabulous genes - should I have had a multitude instead of two? You can have whatever kids you want, but I would ask everyone not to have more than two unless adopted. If you want your kids to be Down’s syndrome children, who are unlikely to procreate, who am I to say no.
3
You are Canadian.
You and your wife had generous paid leave to care for your son. If you are an American
woman, your employer can demand you return to work the day after you give birth. Of course, if you are lucky enough to work for a place with more than 50 employees at your job site, at a job you’ve had for over a year, full-time, you can get six whole weeks of leave - unpaid.
Your son could see any doctor or specialist he needed. An American child with Downs will see only the doctors his parents’ health plan allows, provided they even have one, and even then, the family can be bankrupted by high deductibles or surprise medical bills after the fact.
When you and your wife pass, you can be confident that humane social services and a strong safety net will see your child well cared for. American parents rely on a patchwork of bare-bones group homes, truly horrifying Medicaid nursing homes, and overburdened social workers. There is a strong possibility that after they go, their child will fall through the cracks and die in a gutter on the street like a dog. Literally.
You are asking for a humane decision from people living in a society that lacks all humanity. America has no pity and no mercy for the weak or the helpless. Humanity for American parents will look very different than it does in Canada.
49
LF, Very well said.
12
Why would LF say that an American woman can be required to return to work the day after a baby is born? That is NOT true.
1
Great piece, thank you. I've worked with people with Down syndrome as well as other disabilities, and also have relatives who chose to have a child with Down syndrome. They are often wonderful people.
8
To everyone who is supportive of aborting infants with DS, that may be your choice but how do you feel about aborting female infants as is the norm in China and Inda? There are about 30% fewer female infants than there would normally be had there not been sex selective abortions. Is this "feticide;" isn't permitting abortions of fetuses with abnormalities yet objecting to those that are female a kind of irreconcilable problem: it's OK to abort an entire group but not a different entire group. For what's it's worth, I had a genetic disease and spent many, many years confined to a hospital due to immunological problems. While these problems ultimately abated, I was able to earn two law degrees as well as masters in Management from an Ivy league school. So much for the claim that genetically disabled persons are a burden on society and should be aborted.
4
What exactly is abnormal about being a female? Are females physically unable to reproduce or care for themselves? With respect to the latter, that may in part explain the infanticide example you pose, though it is not due to physical limitations but due to societal structures which people control. Your legal education didn't teach you how to identify a strawman argument? Let me guess, you are a man. I am glad you have found the ability to succeed and support yourself despite obstacles. Your situation seems to have very little bearing on the proposition in this article. What is your point? That a genetically atypical fetus should never be aborted? I too, like many other commentators, fail to see the ethical argument in this article (only the emotional argument).
1
As the mother of a disabled child who was born nearly 50 years ago, pre- Roe vs Wade, I never "wonder why more people do not choose to bring children" with serious disabilities into the world. I was fortunate - our families were able to help my husband and me with the financial burden of our daughter's care until she died at the age of eight. But for low-income working parents in the United States, who often don't have family to fall back on and who struggle to provide their "normal" children with basic necessities, bringing a disabled child into the world is not an ethical choice.
37
It takes many types of people to make a community. People with Down's syndrome tend to be friendly, accepting, and kind. Many communities could do with more kindness. I commend the author's sentiments.
Without an ethical framework, prenatal testing can have unintended consequences on a society. For example, prenatal testing has led to the largest genocide in the history of our species - the tens of millions of missing girls in India and China. In my view, prenatal tests should be limited to fatal chronic conditions. The rest should be left to fate, and communities should accept and support all who joyously arrive.
6
I truly appreciate - and whole-heartedly agree with - Dr. Kaposy's position regarding prenatal diagnosis with Down's (and other disabling conditions, for that matter). The questions for me is whether we, as a culture, will decide that the investment of love, affection, time, and other resources in children/people with Down's and other disabilities is simply not worth our time and effort.
If that answer is yes, then I, myself, as a disabled person -- and everyone like me -- will become an anachronism. We will no longer exist in the future. In a world without the disabled, I would have been canceled from humanity, aborted before birth, no matter how great my intellectual gifts have ultimately proved to be, and no matter the value I have added to society (so far - I sill have a good 30 years of life expectancy to go). My contributions, as measured by (non-disabled) others, have been substantial, and I have won many accolades and awards, much recognition, and substantial reward. I can only hope that there are many people holding the same opinion and ethical stance that Dr. Kaposy does, whether for secular or religious reasons.
I have no wish to impose my beliefs on others, but I fervently hope that we are cognizant of the value of every soul making up humanity, no matter how perfect or imperfect the vessel in which it resides.
85
You bring up the question of value to society that haunts every thinking person. How do we determine value? Does every human bring value? Who determines? These questions are ones that prospective parents are faced with every hour of every day. Does the question of value relate to intellectual capacity or just the ability to breathe? I don't have the answer, but these are valid questions.
6
Thank you for adding your thoughtful and important perspective to this conversation. Please know that there are many that share your views and would go to great lengths to ensure that your voice remains heard and your life valued
7
I appreciate the author's post. I grew up with an uncle with Down's syndrome, and I wouldn't be the person I am today without his unconditional love and joy. But because of the level of his disability, my uncle needed constant care. Everything was fine until my grandparents passed on. No one expected my uncle to outlive them, and the siblings were caught off-guard.
No one in my family was ready or able to support my uncle for decades more, and the responsibility eventually fell to the state. It didn't end well for him, or for any of us.
The last thing on your mind when you welcome a child into the world is your own passing. But for a child who can never care for himself, the responsibility for his life continues on long after you're gone.
58
"No one in my family was ready or able to support my uncle for decades more, and the responsibility eventually fell to the state. It didn't end well for him, or for any of us."
That is a nightmare.
5
The medical and biological ethical questions of whether to have a Down Syndrome child go far beyond the emotional parental attachment that Dr. Kaposy focuses on. His final comment unfairly suggests that anyone who disagrees with him does not value acceptance, empathy and unconditional love.
Kind and caring people may also want the full experience of having children, and want to have a child that will not need a lifetime of care from them or the state. They may want to watch that child grow up, and have children of his or her own.
Those parents also have free choice, and they make a hard decision that is equally as valid and loving as the decision to have a Down syndrome child.
The purpose of reproducing to pass on healthy genes and creating children that can thrive on their own without parental support for life should also be considered as a valid reason to choose differently from Dr. Kaposy. Parents who have a Down syndrome child will likely have less time and resources to support other children due to the needs of the Down syndrome child. Each parent should be able to choose without judgment of which choice is ethically superior.
31
I’m glad the author is happy with his son, however I can only imagine how even more overwhelmed the social safety net would be if everyone made this choice. Living in Canada insulates you from medical bills as does earning a high income. Although Downs Syndrome occurs with young people it skyrockets as people age. A 40year old mother has a 1 in 40 chance of a DS child. Similarly correlations are being shown between autism and older fathers. Perhaps we should be more cognizant of the risks we are taking by delaying children that can cause harm. We’re not as immortal as we pretend- nature has other plans for our reproduction!
13
I wonder if it is easier to imagine bringing a child into the world with a disability - whether Down’s Syndrome or another disability - in a country that has nationalized healthcare and other educational and social supports like Canada? I think about the state of Illinois whose budget was frozen for two years and decimated social service organizations, in particular ones that serve people with disabilities. In states where there is more provision for longer term education and housing support programs perhaps it’s easier? It seems like if we judge families for having fear around how they might manage, we’d be better off thinking about how we can collectively support people with disabilities - not as a burden but as valuable, worthy parts of our communities. Somehow, the ethos in the US seems to have moved so far away from collective responsibility or support.
13
I am happy for Dr Kaposy and his family that Aaron is such a blessing to them as a son. I am also happy for them that they live in Canada, which has a culture of compassion and a social safety net that will ensure Aaron’s care when his parents are no longer able to. However, in the US resources for families with disabled adults are very sparse, and the current administration is hellbent on shredding whatever is left of our social safety net. The decision to commit to bringing a disabled child into the world necessitates looking past the adorable baby stage to consider frighteningly insecure future he or she may face. For American parents who are given a prenatal diagnosis of Down’s Syndrome, the ethics to be considered are very, very different.
It would be a stronger ethical position for those who wish to advocate for more parents to decide in favor of carrying Down’s Syndrome children to term to lobby for better services for disabled children and adults instead of trying to guilt parents against abortion.
22
Down syndrome is also associated with higher risks of significant physical ailments like congenital heart disease, leukemia, duodenal atresia and lung disease, among others. It's not so straightforward, and oftentimes you may not know ahead of time where on the spectrum your Down syndrome child will fall. Not every kid ends up like Corky from Life Goes On.
21
Diagnostic tests that can identify Down syndrome include: Chorionic villus sampling (CVS). In CVS, cells are taken from the placenta and used to analyze the fetal chromosomes. This test is typically performed in the first trimester, between 10 and 13 weeks of pregnancy.
That is much too late into the pregnancy for most people to decide to abort.
If a test could be developed to detect in the first two to four weeks of fertilization it would be easier to abort, assuming there were no religious, moral, or ethical concerns with abortion. Until that test is developed, people should educate themselves to avoid becoming pregnant if they are at risk. Avoiding pregnancy is a much easier decision than the alternative.
6
1. People are not naming "late" diagnosis as the problem.
2. Down's is not hereditary, so "at risk" is not an issue.
4
1.Of course late diagnosis is a problem. The author himself mentions in the article that his wife "already regarded him as our baby", when the diagnosis was made, which he indicates was a reason they did not terminate the pregnancy. The earlier diagnoses are made the more options are open to those affected.
2. Although you are mainly correct actually a small percentage of Down syndrome is hereditary (in the order of approx. 1% of cases)
Down Syndrome: Prenatal Risk Assessment and Diagnosis
https://www.aafp.org/afp/2000/0815/p825.html
I don't think the author put up an ethical case for having any type of children, and very stubbornly ignored many of the actual reasons this type of child might be undesirable (more difficult parenting requirements/costs, less ability for the child to provide care when the parents age, etc.). Reads like a bunch of motivated reasoning.
13
So the reason people have children is to create unpaid servants for their golden years?
1
If you're pro-choice, then you respect other people's right to make that choice for themselves. That doesn't include trying to argue with others about why they should do what you want.
36
Surely you don't really think this; surely you think that an informed choice can still be free. Many of the choices I've made freely in my life I have made only after hearing arguments for both sides. I'm grateful to have been thought capable of reasoned decision-making--that is, decision-making based on knowledge of the actual reasons for and against a decision. Often that knowledge is gained socially, from hearing about other people's perspectives and experiences.
15
Welcome to the tribe Dr. Kaposy. My wife and I welcomed our DS son 20 years ago; we are still pro-choice today. For me the ethics of the matter were related to his duodenal atresia; if not for modern medicine, our son would not have lived. Likewise, it was modern medicine that provided the AFP test that told us we were having a perfectly typical pregnancy.
The crux of the matter is that the specialists give us more medical information than is good for us and force us to play god. That's the price of progress.
That said, our son makes other humans behave with more grace and kindness than they might otherwise. (I've seen this happen repeatedly.)
Our road is much different than we expected; bumpier but richer too.
16
That is nice you made the decision that was right for you but do not project that it is the right decision for everyone else.
You have to come to grips with the certain fact that a child with Down Syndrome has abnormal cells in every organ in his body and that for every child that functions far below his or her age group but still functions there are many others who have chronic life threatening abnormalities that require multiple surgeries and live lives in chronic pain and severe disability. And that future cannot be predicted in utero.
If a couple chooses to terminate a pregnancy with a embryo with down Syndrome does not mean they do not "value acceptance, empathy and unconditional love". And it is cruel to think that.
99
This is a beautiful tribute to our children born with Down's Syndrome. As a student nurse, I did my pediatric training at SF General Hospital. We saw many heart-breaking illnesses...from hemophilia to Brittle Bone Disease. (I will spare readers its long Latin name.) Add to the mix, the abused and neglected child. But my day would light up when I would see Billy, an African-American 5 year-old recuperating from pneumonia. Billy had Down's Syndrome, and even with his fever he would smile, wave, and hold out his little arms to greet us young nurses with a hug. He was the super-star of the pediatric ward. And his mom...a beautiful woman, so loving and caring. We all had tears in our eyes when it was time for him to leave us to go home to his family!
I, too, am pro-choice. But I decided there and then that if I were ever to have a Down's child, I would welcome her or him as a gift from above.
25
Categorizing children by virtue of what they do for the psyche of the adults around them is irresponsible and naive. People denied individual potential suffer. It's not about you.
12
I agree with your analysis completely. However, that as you well pointed out, the overwhelming majority of people with Down's will always be a ward of someone. Given the present longevity of people affected with trisomy 21 they will go on to be wards of their siblings or social services. Older Downs patients suffer from diseases like dementia at much younger ages than the general population thus suffering from diseases of the elderly at early middle age. You wonder if people expect perfect children, no they don't. The point is that a plurality would rather not have one that is definitely disabled. More power to you if you are willing to undertake a lifetime responsability for a disabled person, most of us wouldn't if we could avoid it.
75
I had a couple in my practice, with a Down's son, born same day, in the same hospital that I was born in. He lived with his parents. They provided for him and took him everywhere, on all their vacations. As they aged, it became increasingly of concern to them, as to what would happen to him, when they were too frail or deceased to be his guardian. So we arranged for their son to start living in a group home. An actual house, with other disabled persons, managed by a person without disabilities. Arrangements were made for him to come home on the weekends. Unfortunately for his parents, he enjoyed living with his friends and participating in all the activities, both in the house and on excursions, that he stopped coming home on the weekends because he didn't want to miss out on any of them. It was bittersweet experience for his parents.
4
There is a huge range of abilities with Down's syndrome children. Some are highly functioning. Others will always need extensive help. This is a huge risk to take, and it's understandable why most prospective parents don't take it.
83
Another ethical consideration is whether the parents have the means, financially and time wise, to care for the child, including after the parents pass away. To what extent is the responsibility for the child borne by the public? Certainly this choice is easier to make if somebody helps pay for it.
40
Yes, I agree. My husband and I were faced with the same decision six years ago, but we chose to keep the baby (though my husband kissed his dreams of retirement good-bye). Fortunately, the author is Canadian.
By the way, our son is normal, but a chimera. It was the extra set of DNA that indicated a serious abnormality in my prenatal tests.
6
But the writer isn't making an ethical case so much as a personal case. My wife and I went through a similar situation, and decided to terminate the pregnancy. It was a tough decision and we both cried the night after. But it was the right one. We did not feel it morally right to bring into this world one who would be so challenged and unable to live a full life. We felt to do so would be cruel. In the meantime we have had other children who enrich our lives and will be strong individuals. While I always think sadly back on that decision, I do not regret it.
229
Thank you for sharing. We made a the same decision for similar reasons. It was very hard to choose to do that but we believe it was the correct decision for us.
11
People with Down Syndrome live full lives.
1
Personally I would prefer to raise a child without disabilities, a choice I was denied. Someday I am hopeful we will not only be able to correct such defects in utero, but we will be able to understand in molecular detail how and why good gene sequences encode positive traits such as good coordination, good looks, a strong immune system, empathy, kindness and intellectual strength such as musical ability and analytical ability. With that understanding and with tools we are just starting to develop we will be able to assist parents who want to give their children advantages they were not lucky enough to get by chance in the genetic lottery.
9
I am surprised that this article does not touch on the fundamentals about having a baby with Down syndrome (or any genetic condition) - cost. Down syndrome predisposes a child to a number of early-onset diseases, all of which raise the healthcare costs for this family. If Dr. Kaposy is happy to absorb the healthcare costs of his child, and establish a health-care fund for his child for the duration of his life-span, then by all means, have the child. Otherwise, I find it an extremely unresponsible. It is true that we cannot predict the future for anyone (and all of us will grow old, infirm, and die), but there is a difference between knowingly having a child who will have astronomical healthcare costs, vs bad luck later because of chance (ie, trauma, etc). I see first hand the outcomes of disabled patients AFTER their loved ones pass -- and they meet a horrible, institution-mediated end. I wonder if Dr. Kaposy has thought of that?
95
The author is Canadian, so he did not have to factor in the astronomical health and general care costs that we in the US do. That said, I also received a prenatal test result that indicated a serious abnormality. I refused to have an abortion unless the abnormality would result in lifetime suffering for the baby. I had no problem with raising a baby with Down syndrome. It turned out my son is a chimera, who carries the genetic material of his twin brother who died in utero.
12
It is true that as a Canadian most of the health care costs of a child with multiple health issues will be included with their health insurance, however not all. There will still be many extra out of pocket expenses for those caring for a chronically ill or disabled child. This type of scenario will definitely, even in Canada, place an extra financial burden on the caregivers. Especially in the situation where the child is more severely affected than it seems Aaron might be. After a certain time children/young adults who are not highly functioning enough will need a place to spend the day if all caregivers are working (they can only stay in the public school system for so long), not to mention a place to live/get care after their caregivers have grown to old or infirm to care for them, or have passed away.
6
You say your son is normal, but carries that DNA --- would his twin brother have had Down syndrom then, but he would not have?
I accept that the author’s argument is heartfelt, and I respect it, but I have major issues with it, as I have with the state laws that are cropping up prohibiting abortion on credible suspicion that a fetus will grow to be a human with Down’s syndrome.
First and foremost, Row v. Wade guarantees a woman the right to abort a fetus until “viability” for any reason. These new state laws must by definition be unconstitutional if they’re imposed BEFORE viability. And anything that precludes exercise of a woman’s absolute rights before viability gives the power to states to regulate abortion for many reasons and possibly for any other reason. I’m very strongly against any such attempt because it renders Roe meaningless; because it returns us to a time when a very basic issue was governed differently by states when I believe it should be governed uniformly across America; and to a time when women were basically enslaved to a reproductive cycle when any attempt at self-determination by them could be a crime here but not there; and because it invites a holy war on our soil. Roe’s brilliant compromise between the legitimate rights of women AND states MUST be protected.
68
Then, in his op-ed title the author ties such a decision to ethics, yet makes no real argument supporting an ethical basis for talking a Down fetus to term. He makes a self-interested one based on personal values. While I accept that there are values-based reasons that are not primarily religious on which a women might base the decision to take a Down fetus to term, I suggest that the vast weight of reasons why one might do so are religious. And we’re back to the right of religious communities to impose their beliefs on an entire nation.
If I were arguing the “ethics” of such a choice, I would start by examining the need for a rational balance between legitimate but intractably opposed interests, and the need for compromise that must be respected to remain effective at that balance. But I would also define both views on the Down matter. One view clearly holds that the fetus is a human being and ethically we have an obligation to protect it regardless of secondary considerations. The other view holds that, as regards specifically the Down issue, there is no serious “ethical” basis that is not religious in origin for assuming that we have an obligation to perpetuate a dreadfully incapacitating condition when we have an option.
So … argue the ethics.
It remains that up to “viability” it’s lawfully a woman’s right to CHOOSE – for ANY reason; and, before “viability”, it’s not for the state to impose unconstitutional permissible limits on that very individual choice.
33
Good for you, for once.
This is a complicated issue, to be sure. Our son, now in his mid-thirties, was born to parents who are adamantly pro-choice and also certain that the best society is one that that accepts and welcomes differences among us. It helps that I had known two young women with Down syndrome when I was growing up (it was much more common then to have "change of life" babies). I also was fond of the people I worked with at a state institution -- and also saw how terrible institutionalization was. Times change. Perhaps the most important factor in improving our son's prospects was the change in educational philosophy to one of inclusion instead of separation. Not only did this help him thrive, but it prepared the community to accept him fully after he left school. His neighborhood friends remain his friends to this day. Our state, until recently, provided good supports to those with disabilities. These are not minor things! States where schools and services are more restrictive make raising a child with a disability much more difficult, and therefore, also, the decision to bear a child with a handicap such as Down syndrome. Yes, to this day, there are times when we get discouraged and ache for him, but these are outnumbered by the times when we see our strong, stubborn, motivated son advance beyond anyone's expectations.
16
Interesting topic. I am pro-choice, and "like" to view abortion as a woman making a choice about her own body (I.e. whether of not to be pregnant at any given time.) It's a little disconcerting to be reminded that sometimes the express goal of abortion is ending the potential life of the fetus.
3
Indeed. No matter how you rationalize the choice, an abortion will always involve terminating the life of a human being.
I am pro-choice as well. My position is predicated on the fact that we will probably never be able to reach a scientific consensus on when an unborn fetus should be protected by law. While the viability standard is increasingly dubious, in the absence of scientific and legal consensus, we must therefore leave this grave decision to the person carrying the child.
That is why we much make birth control and early action (e.g. "morning after) abortifacients more readily available. With practical sex ed., we can hopefully make abortion - especially the later term variety which bears such a close resemblance to infanticide - a rarity.
In the end, there is no escaping the reality that an abortion snuffs out a nascent human life. That is sobering stuff indeed, and we need to strive for alternative solutions (preferably those of a prophylactic nature) to hold our collective moral center.
2
I often read glowing essays written by parents about how lovable and wonderful their Downs child is. I don't doubt their sincerity. But what about these kids' futures? When their parents are dead and gone? It strikes me as selfish to not think about how their Downs child's life will be, in the future when their parents have passed away and the Downs children become adults. They will rely on caregivers who may not give a darn. Or they do give a darn, but there is no money to provide the level of care these parents provide during their lifetimes. I am amazed at how short-sighted the author of this article is. Do these parents ever think about the situation their child will be in at age 50 or 60? Their decision to bring a Downs child into the world strikes me as selfish. Also think about the level of taxpayer services required, and how those dollars could be spent helping other needy children who at least have some chance of being a productive member of society at some point.
52
So are taxpayer dollars only well spent if they are on people who have some chance of being a productive member of society? What about those who are permanently disabled for one reason or another?
6
I have no dog in this fight, being childless, but are we really saying everyone has to be "productive" to be of value?
11
As if there is any guarantee that our offspring will be happy, healthy, productive people in 60 years. Heard of the opioid epidemic, cancer, mental illness, student loan debt?
Deciding that an imperfect human does not deserve a chance to live and strive for their maximum potential is utterly arrogant.
3
Our third child, who tested as "normal" in utero, has autism, is bi-polar, and has a whole galaxy of disabilities. (I joke that he has as many disabilities as there are people diagnosing him.) He is 35 now, and is unable to live with other people. He is highly intelligent and resourceful, and he is living on the streets. He is reasonably happy with his life, happier than most people I know.
My point is just that eliminating every child who does not test out as normal ahead of time does not eliminate all problems. Of course. If anyone has a child, they have to accept the possibility that things may not go as they might wish.
This is part of living. Children born "normal" are also sometimes horribly injured and disabled later. There are no guarantees. I applaud the author, who was open and flexible enough to accept and rejoice in the child he was given.
26
Of course there are no guarantees, but all the more reason to take control when you can. There are no guarantees that wearing a seatbelt will protect you in an accident, but that's no reason not to wear one.
18
I am very torn about this. My wife and I are parents of a son with Down Syndrome who will turn 42 on Wednesday.
He is moderately healthy but does have blood issues which present themselves as a potential precursor to Myelodysplastic Syndrome, or leukemia, both of which are illnesses which are more common with DS than the background population.
So we have to have him monitored frequently for markers in his blood, and plot whether he is doing OK, and thus far, he has. It is a part of being vigilant.
I will be 70 later this year, and the hope that my wife and I will outlive him. That said, we have not choice but to do watchful waiting.
Combine that with the fact that he lives with community support and receives support for his job at a pizza restaurant for which we are thankful.
But if one strips away supports built-into society to accommodate issues like DS and others, and the notable increase in the population of those with autism, as a person with a conscience about the cost of supporting individuals like our son to society, I have to ask the question, what would happen if there were no supports at all?
Given what I know about the topic, it is clear to me that without supports, people born with DS, etc. would cause catastrophic burdens on families. A DS birth changes life profoundly.
I understand the burdens of DS birth. That's traceable. What is not traceable is births of people with autism, and being able to trace one issue and not the other troubles me.
41
The answer is simply do not monitor, and let nature take its course.
The thought that a parent has to wish that (s)he will outlive her/his disabled child is terrifying and should give us all pause when he make decisions in this area.
8
Thank you for sharing your wisdom regarding this issue! Your poat shows compassion not only in your personal situation but to society as a whole. Thank you!
While each person should decide for themselves, the question remains: what will happen to your disabled child when you die? A close friend of mine has a now-adult child who is disabled, and she and her husband spend many hours a month laboring over the forms demanded by the many other governmental entities with which all disabled persons must deal. There is no way their child could ever manage this. So who takes this on when they can no longer serve in this role? And what about the disabled child with no siblings? Or with siblings who are leading their own lives and don't want the massive commitment and disruption a disabled sibling can be? My friend worries about this all the time. . . .
115
Thanks for this. My sister is special-needs, and my parents are getting older; at this point, it wouldn't be unheard of for them to die in the next decade. Meanwhile, I'm in my 20s, and on a pretty intense career path. I don't think I could sustain my hours or my career if I were to have to become my sister's primary caretaker. When the time comes, I don't know what choice I will make, or how involved I will be in my sister's care. But I do know for certain that I would never, ever judge someone for not wanting to take on the massive commitment that is caring for a special-needs person. (And I'd like to think that I value acceptance, empathy, and unconditional love, too.)
79
It is great to hear from a sibling! I also have a sibling with special needs, specifically Down's Syndrome. I would never judge another person for not wanting to have a child with Down's. So many people, including commenters here, write about how kids with Down's are so loving, happy, and big huggers. This is a stereotype - while true of some kids, there are kids with Down's who have tremendously challenging behavior problems which makes child-rearing very difficult. It can be very hard on the entire family. It is for this reason, not the cost of caring for the adult, that I support whatever choice parents make when they discover their child has Down's Syndrome. SSDI (taxes) will cover the cost of care for adults with DS, including the cost of care in a group home and medical bills. I wish that we gave adults with Down's and other disabilities much more in SSDI benefits, and I wish we had more protections in place to ensure that they were not taken advantage of financially, or in any way.
5
My sister and her disabled adult son (no siblings) live with my husband and I. I have no children. He is 30, has an IQ of 62, seizure disorder and is on the autistic spectrum. He cannot live alone - ever. My sister, husband and I are all retired. She spends huge amounts of time dealing with agencies. When we all die (we are 60, my husband is over 70), what happens to my nephew? Off to state care with his assets being controlled by some hired entity. That is his fate - there will be no family to care for him. He will literally be left all alone in his later years with strangers in some group home.
I asked my sister one day if she would have had him had she known how it all would turn out. Her answer was NO.
14
As the parent of a low-functioning child with special needs, I think the last sentence of this essay is a bit blithe. Most parents of children with special needs did not have a choice to be in that position. I admit that if there had been a prenatal test to clue me in as to what I am facing now, I would have not have chosen this life, and this admission in no way means that I don't love my child or that I don't value acceptance, empathy, etc. It's not about broken dreams, but about a day-to-day struggle that is not what most people want to sign up for. And that's the honest truth.
741
Daisy, your honesty is refreshing, and your love for your child comes through despite your frustration at being in the situation in which you find yourself. The lack of support for children/people with special needs in the US is appalling. Dr. Kaposy & family are fortunate to live in Canada, where access to medical care, etc. is a right, and not something that the average person scrambles to try to afford, or goes without other necessities in order to procure. As a (now) disabled adult, and as a mom, I sympathize with your plight and understand exactly where you come from with your feelings. After I could no longer work, I volunteered (when able) to help grade seven kids with learning issues in remedial mathematics classes. It was my "small stab" at helping since studies show that more than 3/4 of kids who fail 7th grade math or language arts - for whatever reason - eventually drop out of high school. My problems have worsened and I can no longer tutor, etc., but I'm still trying to help in whatever ways I can. I know how hard things are for me; they can only be harder for parents with kids trying to deal with the same kinds of problems!
32
My sister has Down Syndrome and functions at about the level of a 3-year-old, although she is in her forties. She can not read or write at all.
She can not cook or handle money. She functions below the level of some people with Down Syndrome, but there are many others like her. She is not going to marry. She is not going to have a fulfilling job. She can not form real connections to other people. She is never going to "grow up." Her life has not been easy, and it has not been easy for her family. Has she had a good life? I don't know.
My mother loves her daughter very much, and has always put her first, no matter the cost. But if she had to do it over again, she would not have had my sister. And I completely understand why.
55
In stead of producing more child that can't grow up and help themselves we should focus on the many children in the world that need help. My family made a choice and adopted a child that had no parents from New Jersey, it was the right decision. Currently there are 7.1 billion people on the planet and rising.
45
This argument is always so mean-spirited. To tell a person caring for a special needs child they "should have adopted" is just so odd. Why? Let's put that trip on all the fabulous child-free people. I have found that parent with special needs children are often helpful, compassion oriented community members. Many DO foster, having learned the ropes of child care 10x's over.
6
I just spent an hour discussing the relative merits of Romeo and Juliet v. Hamlet with my 13 year old. That is exactly what I was looking forward to as a parent and I would not give birth to a child where that not a possibility. Children are hostages to fate but I could control that fate to some extent and I did.
55
Well hey, what if your 13 year old actually abhors Shakespeare and your merit discussions are all a big farce born of her fear of not meeting your unwavering expectation of exactly who she should be? I didn’t realize we could pre order the kind of kids we got... man when I think of all the hours I’ve spent driving my daughter to soccer (which I personally find really quite dull, shhh) I’m just kicking myself for not “controlling my fate” as you have.
5
I applaud your decision. It is right for you but not for all. My husband and I would not have had the patience to raise a baby with Down Syndrome. I am not proud of this, i am just stating a fact. I do think, if there is a God, this Spirit would want us to bring in healthy babies as we now have the medical knowledge to abort and try again. I do thank God i and my husband have never had to face this challenge. The very best to you and your courageous decision.
31
Anecdotal evidence is not statistically valid. I'm glad the author is having a wonderful experience, but that does not invalidate what so many other people have gone through.
88
Right, just as their terrible experience does not invalidate what so many happy loving families which include a person with special needs have triumphed through.
1
I am glad posters have pointed out, from their personal experience, that for many prospective parents, the issue isn't at all about "raising" a child with Downs Syndrome, but who will care for or oversee the care of or pay for the intensive care that an adult with Downs Syndrome requires once the parents die or are unable physically or financially to care for that adult child? Can't expect all to have siblings, or siblings with significant finances, or siblings with ability to do what the parents have done. It is a terrifying and real problem facing aging parents with adult children with significant disabilities who cannot live independent lives.
162
It is a valid concern, certainly, but it is NOT true that all adults with Down syndrome will require intensive care. Many live independently, or with minimal assistance.
17
Most of us are not independently wealthy and expect our children to be economically self sufficient by their 20's. I have read that a high percentage (at least 50%) of DS adults develop early onset Alzheimers and would require institutionalized care at about the time their parents are already retired. Additionally, DS is a spectrum. The DS individuals we see in the media probably represent the highest functioning cohort. However I have personally known families who had to institutionalize their DS child in their teens, due to no longer being physically able to cope with them. One of my friends had to be hospitalized with broken bones and a concussion after being beaten by her teenage daughter.
8
I wish that there was better care for people who needed it, in this country. I have a friend who has a son with autism. she faces the same concerns.
7
I appreciate Chris's article as well as his opinion that people adapt to the extensively wide range of situations that parenting brings - Down Syndrome or not. We love our children as parents quite simply.
There are many cultural norms that effect the decision to abort or not. I met a married couple in 1977 in Sweden who both had Down Syndrome, lived in a subsidized apartment and went to work each day. This was not seen as an anomaly - but as how life is meant to be. Iceland, on the other hand, still with an incredible safety net, has very few children born with Down Syndrome. Cultural interpretations and the safety net we have (or lack thereof) in the US effect whether people live or are aborted. Seems pretty unfair to me that an individual can be supported in one place and one family, but not in another place or time. Some label the practice of aborting babies with Down Syndrome genocide.
13
"Nonetheless, hopes and dreams of perfection might be a strong motive for parents to choose abortion. "
This seems a bit harsh.... We say we think our kids are perfect but we know they aren't. I totally get why someone might choose to have a child knowing in advance that their child will have developmental issues. I also get why some would not. The point here is?
29
This is a well-written, heartfelt and commendably candid analyses of the author's decision of whether to procreate. I noticed, however, that it stops short of considering the child's perspective.
I mean things seemed to have turned out well for the author's son. But what if, for example, he was born with more severe deficiencies, or his family fell into poverty, or his country's social safety nets weakened significantly during his lifetime: Is there a point at which being born becomes more of a curse than a blessing?
Not that I don't appreciate the author's introspection here, nor delight in his conclusion and its happy outcome. It just seems to me that a true "ethical case" for this or any other birthing decision would examine the best interests of not just the parents but the child.
41
Exactly. If I had known in advance that I was going to be born with Down Syndrome, I would have preferred not to have been born at all.
1
As a disabled adult who grew up as one of three children born to young, economically disadvantaged (a/k/a poor) parents, I can only say, "shame." Do you really think that living in poverty is so bad that it is better that one not live? My parents both eventually earned advanced degrees, tough neither had finished college when they married and started our family. We had some tough times and, yes, money was scarce. Despite my health issues and our family's challenges, I became a National Merit and Presidential Scholar; graduated at the top of my college class; earned a doctoral degree at age 24; succeeded in two highly competitive professional careers; and won several national awards for my professional achievements before my disability became severe enough that I could no longer work. Would my best interests have been served by not being born? I would have missed out on a great deal, not to mention I wouldn't have married at 30 and had my own family (including a son who graduated summa cum laude from university this past summer). Nor could I have celebrated my silver wedding anniversary this year and continued to be support for my 80 year old father. I think you assume outcomes that are too dire and bleak, because they fit your biased world view.
1
My sister-in-law made the opposite choice 30 years ago. I don't think she ever looked back. That's what choice is all about. As long as there is choice, there's freedom.
197
The choice for eugenics. It is striking for me to compare the population of Down Syndrome people in Ireland, where abortion is currently illegal (which may change in a May referendum unfortunately) to that here in the US where a whole class of people have been denied the most fundamental right to life. Kudos to the writer to have embraced their child.
2
@ Dave:
Choice is the operative word here, isn't it? The writer made a choice, my sister-in-law did as well. We must have choice over our own bodies, always. Especially we who are women.
2
It's wonderful that you made a well thought out choice that was right for your family. I hope your wife had a coequal voice in the decision too. That you have a choice is what it's all about. Choice. Your choice. My choice. Choice is just that -- everyone decides what is right for their selves and their family. What is right for one may not be for another due to life circumstances. Medical care, support, socio-economic standing -- these all impact on a family's ability to care for child with special needs. What is right for you may not necessarily be right for someone else who may not be able to deal with a child with special needs for all those reasons.
Best wishes for you and your son and your family. I hope you give everyone else the same right to choose as you had in making the decision to keep your child.
54
I appreciate Chris's article and value a parents right to make their own decisions for their family. However my younger sister has developmental delay and functions similar to someone with Downs Syndrome. She is 48 now, both of our parents have passed. She cannot work to support herself, cannot independently manage finances, she fixes only her own breakfast because she has shown she is unable to consistently make healthy and safe (unspoiled) food choices. She is part of a supported group (mostly Down Syndrome) with adults who monitor her daily tasks. It is very expensive and it is questionable whether my siblings and I can afford to allow her to stay there for the rest of her life. It is a good situation today. Although there are always situations, one of the males in the group twisted her ear so hard it was swollen for days, one of her teeth needed to be pulled because she wasn't brushing well enough. My sister will most likely outlive all of her siblings. Then what? Who will make good decisions for her? Who will be kind to her? There are so many poor group homes, uncaring care providers, extremely limited options on social security level funds. Yes, my sister has probably never intentionally hurt anyone, has lived a nice life for 48 years. I fear what her last 10-15 years will bring when we're all gone.
520
You provided readers with the perspective that is never addressed in articles on this topic. Thank you for taking the time to present the critical issue.
122
Thank you for your story. The original piece comes off as very naive to the reality of the long-term situation for many families.
193
Thank you, thank you, thank you for pointing this out. Let me highlight again: "I fear what her last 10-15 years will bring when we're all gone."
It won't be 10-15 years. It will be lucky if it's five years.
41
I am surprised that the author does not mention basic instincts of human being. We are evolved such that out instinct directs us to the way of better chance of existence of our collective genes as long as possible, generation after generation.
I am not a fan of fundamental evolutionist in the sense that we have to strictly follow the rule of natural laws. But, I don't know well about the best way to escape from the chains of evolution to become a real human or super human, either.
Pathos of all human beings comes from their marginal existence between animal and super-animal.
To choose or not to choose, that is the question... unanswered still.
2
I have known a couple of Down Syndrome adults, and choosing to have a baby with Down Syndrome is simply asking for trouble.
52
I've known a few adults without Down syndrome who weren't great people, either. How about that.
7
I choose not to have a child with down syndrome not because of the possible difficulties of raising such a child, but the ethical implications of leaving a dependant person without care when I die.
Parents are of course able to choose when they wish to have a child, but the long term consequences should not be ignored.
242
We made the same choice. I do not understand why anyone would make any case of any kind for having a child with Down Syndrome or any other serious and lifelong health issue. It is an intense, emotional decision for each family to make independently. Ethics have nothing to do with this kind of decision.
8
Why don’t these people adopt a cat or dog instead? There are way too many people above and beyond those with severe disabilities. Less people please!
6
What a beautiful piece to celebrate your son's life! after reading so much negativity in the politics section, I finally found something positive that celebrates life, any life, regardless of the challenges it may bring. Please do not pay attention to so much negativity in some of the comments, I think people sometimes feel judged by the choices of others when that is not the intention at all. And to set the record straight: no, Canada is not a health care heaven. I live here and I have so many stories to tell, this comments section does not have enough space!
15
Thanks for this essay. I am pro-choice and would never urge anyone to abort a Down's child, but it is disingenuous not to include the other side of the story. Not all Down's children are easy; families and lives may be overwhelmed and ruined by the demands of caring for a severely disabled child. Some families are better equipped to meet those demands than others. One family in particular that I know has quietly imploded; the parents have sacrificed everything, including their relationship--and their other children. It's not for everyone.
302
I am pro life. I imagine that I would have and take care of to the best of my ability a child with Down syndrome because that is what you do with a family member. But I have also seen extremely low functioning adults with a Down syndrome, people who cannot live without supervision or even tell someone if they have been abused. The caregivers who work with these people aren’t all necessarily going to be among the best of society, unfortunately. There isn’t much of a safety net. I cannot say I would want that life for myself or a child, but we don’t always get a choice in what challenges come our way, either. This is one of many reasons the U.S. needs more affordable and generous health care and social welfare programs.
84
I appreciate hearing from someone self-described as pro-life who thinks and cares about what happens after birth and sees the need for programs to help.
24
It is a wonderful tonic to read the light and straightforward tone of this article, as contrasted to much of what is written in the press, enumerating with ponderous gravity the so-called burdens of raising children with Down syndrome. My wife and I faced just this choice six years ago, and chose to have our son with Down syndrome. Five and a half years later, he is a joyous, mischievous, funny, life-affirming addition to our family. He has had one surgery, a tonsillectomy. He is blessed with robust health and a loving family. In reading the comments, I wonder how many people with typically developing children have been surprised by the amount of financial and other kinds of help their children have needed-- and whether they experienced their children's challenges as burdens or merely what was asked of them for these people they put on the earth. My wife and I see our son's gifts to our family-- which have been powerful and unexpected-- as basically commensurate with the outlay of time and energy his care has required of us. And the families with adult children with Ds we know feel similarly. We have planned for our son's future but if it's anything like the present it may prove to be a great blessing indeed.
29
Thank you for this lovely story. I've been lucky to know some folks with Down syndrome and still smile at the wonderful memories I have of loving, charming and so totally warm people who brighten any room they're in.
12