What hell to go through this as a parent. Thank you for describing your experience so that others can know they are not alone with terrible choices like yours.
http://www.thecriticalmom.blogspot.com
http://www.thecriticalmom.blogspot.com
12
I grew up by the ocean, was a swimmer and surfer. My biggest fear was always and has always been drowning. The inability to breathe, the gasp for air. It all sounded extremely painful and cruel way to die.
Years later my mother died of cancer that spread to the lungs. she was unable to breathe and she looked like and sounded like drowning.
Those memories and fears never left me. I don't wish anyone this painful way of dying.
Years later my mother died of cancer that spread to the lungs. she was unable to breathe and she looked like and sounded like drowning.
Those memories and fears never left me. I don't wish anyone this painful way of dying.
8
People in these comments keep complaining that the parents avoided amniocentesis, as if that was inconsistent with their ultimate decision to let their child die. But it's not inconsistent. Had they found out before birth that the fetus had trisomy 18, they would not have aborted, presumably at least in part because they would not have known that he had the extreme form that he did. They only could have known that after he was born.
9
You are a brave and loving family.
9
Mr Comstock, it is humbling and illuminating to read your story. Thank you for recounting it publicly; it is deeply moving and instructive. Of course i can understand your wanting to reduce or minimize or eliminate the discomfort your son experienced. I am so touched by the fortitude that you and your wife showed by being with your son for every minute of his short life--it must have been very hard. Babies are not supposed to die. I do not have a simple answer to your wish. But as a palliative care doctor i am going to be thinking about it for a long time. My best wishes to you and your wife.
16
I hope you truly grasp that you did the best you could with the limited information that you had in the moment. It is a terrible thing to bear the weight of guilt over a loved one's death. It took my mom two weeks to die in hospice, which seemed an eternity. She would wake up from the drugs, cry and go back to sleep. I made medical decisions, none of which were good. My husband is a veterinarian, and all of our pets have died much more easily and with less pain that my mom. It is fundamentally wrong that that is so. Once you've been through it, you know that with certainty and you would change the laws if you could.
22
There is another option- palliative sedation with removal of life support. There is no reason that the choice has to be a) die a tortured death or b) be hooked up to a ventilator with no chance for recovery. When life support is removed, from a child or adult, doctors are required to make sure the patient does not suffer. Normally, they are sedated and medicated with analgesics so that there is no--or extremely low--chance that there will be any air hunger, distress, or pain at the timing of life support removal. This is not the same as euthanasia, not by a long shot. It is humane, medically appropriate, and what is commonly done. Prof Comstock misrepresents the choice and thus the ethical dilemma.
33
Dear sir, you have my sincere condolences. As I age, I truly wish that I had some say in my death that doesn't involve endless treatments that won't help and pain. But I don't and neither did you. Forgive yourself. You did the best you could.
21
You, your son and your entire family were so profoundly let down by the hospital and it's doctors and staff. Hospice should have been provided to guide you through a crisis you had no way in heaven of knowing how to steer through. That was their job. It was utterly savage of them to abandon you as they did. Under the circumstances you were a hero of a father to your son. Would it have a shred of healing power for you to tell the doctor that the choices he made for you were utterly brutal. Maybe you could save another family from such a worst case scenario. You were brilliant and brave to ride through that terrible tunnel with your child.
64
Why do these parents (or at least this father) consider euthanizing a living infant to be more ethical than aborting the fetus that will grow into that living infant? Perhaps this is a disagreement between the parents: Perhaps the father considers both abortion and euthanasia to be ethical choices in this case, and the mother considers neither to be ethical? The second-person narrative made it hard to tell whether this was a hypothetical or a true account of the author's actual experience.
17
Few things stay with me the way this essay will, forever. I wasn't able to go on with my day, I won't ever forget it. I want you to know that your experience has crawled inside of me and will stay with me, that the ethical question at its core has been brought to stark relief. I doubt I could have found the strength to commit these words to paper, to make this experience permanent, and tangible, and real. To commit my own pain to an abstract, a thing that everyone can look at, in the hopes that I would contribute to a greater good. What can I say, except thank you for your bravery, thank you for sharing your pain and opening your heart nto fight for something you learned so cruelly. Thank you. Thank you for your contribution, which I am sure was impossibly painful, to every reader's better understanding of love, ethics, morality, and loss.
37
thank you.
Very moving.
Sympathies for your loss
Very moving.
Sympathies for your loss
7
thank you for your sharing your heart-wrenching story of love, loss, and pain - and for providing an opening for the discussions that we all need to have...
My deepest sympathy to you all. Your son was indeed a gift.
My deepest sympathy to you all. Your son was indeed a gift.
6
As a philosopher myself I'm critical of the many elisions Prof. Comstock makes in his story, moving as it is emotionally. I can imagine the experience & the distress, but the decision to avoid amniocentesis was the real turning-point...
7
Why so? If they would not have aborted, are you thinking they would have avoided the respirator to begin with? But then, there still would have been those minutes of struggle. If your argument is that they should have been willing to abort the pregnancy, what are your grounds? If you decide publicly to criticize a man's account of the horrible death of his infant son, and to do so on philosophical grounds, it seems reasonable that you should be no elisions in your own argument. At all.
6
My first son was trisomy 18. I let him go at day 5. He was cremated, and is with me now but 10 feet from my bed. I did not kill him, I let nature take its course and he is now a part of my tapestry
I cried for days,I became disoriented, and could not find my way home from a simple walk in the neighborhood, and the pain of loss lasted for years, but it would have been selfish to let him suffer just because I wanted something that could never be.
My second son suffers from severe paranoid schizophrenia. He is here in the house with me. I love him dearly.
No one should lose a child, but it happens. Some days are golden, some days are not. I believe I did what was right for Charley, and I am doing what is right for Cary.
I cried for days,I became disoriented, and could not find my way home from a simple walk in the neighborhood, and the pain of loss lasted for years, but it would have been selfish to let him suffer just because I wanted something that could never be.
My second son suffers from severe paranoid schizophrenia. He is here in the house with me. I love him dearly.
No one should lose a child, but it happens. Some days are golden, some days are not. I believe I did what was right for Charley, and I am doing what is right for Cary.
32
Truly awful things happen in this life, and I have been among those asking God why it had to happen, and why it happened to the people hurt.
But what faith does is help us deal with the events that are awful - like knowing that this little one will be whole and healthy in the next life. Of all the people Jesus adored spending time with, children were obviously the most enjoyable.
Our only remaining question is whether we will see these various congenitally affected kids as perfectly intact children or young adults.
This doesn't take away the ache of seeing people you love hurting or sick. My heart is with these parents and all those living with such situations.
But what faith does is help us deal with the events that are awful - like knowing that this little one will be whole and healthy in the next life. Of all the people Jesus adored spending time with, children were obviously the most enjoyable.
Our only remaining question is whether we will see these various congenitally affected kids as perfectly intact children or young adults.
This doesn't take away the ache of seeing people you love hurting or sick. My heart is with these parents and all those living with such situations.
2
Gary,
You are a very good man, father, and husband. No one knows how they will truly think, feel, or react when witnessing the end of their own baby's life. I went through a tiny molecule of what others go through when I battled my conscious when I was pregnant 22 years ago. I confidently scheduled my amniocentesis, knowing that if something was genetically wrong with my developing little someday person, that I would do what I always thought I would...terminate the pregnancy. That said, by the time my husband and I arrived at my appt, I was doubting my ability to make that decision. The tortuous two weeks finally ended with a positive result. However, I wondered, could I actually have given birth to a child who was genetically unable to sustain an independent, long life? And, as my geneticist counseled, if the child had survived, and if something terrible were to happen to both of us, that child would ultimately become a ward of the State. And what then? Who would love that child as only we thought could? Sir, you and your wife did the only humane thing that was available to you at the time. Please re-frame the last line of your touching story. Instead, please think how compassionate it would be to spare the heartache of loving parents, as well as their sweet baby, if we could make a choice to ease a no-hope inevitability of a child's genetics. I hope this ethical conversation can continue.
You are a very good man, father, and husband. No one knows how they will truly think, feel, or react when witnessing the end of their own baby's life. I went through a tiny molecule of what others go through when I battled my conscious when I was pregnant 22 years ago. I confidently scheduled my amniocentesis, knowing that if something was genetically wrong with my developing little someday person, that I would do what I always thought I would...terminate the pregnancy. That said, by the time my husband and I arrived at my appt, I was doubting my ability to make that decision. The tortuous two weeks finally ended with a positive result. However, I wondered, could I actually have given birth to a child who was genetically unable to sustain an independent, long life? And, as my geneticist counseled, if the child had survived, and if something terrible were to happen to both of us, that child would ultimately become a ward of the State. And what then? Who would love that child as only we thought could? Sir, you and your wife did the only humane thing that was available to you at the time. Please re-frame the last line of your touching story. Instead, please think how compassionate it would be to spare the heartache of loving parents, as well as their sweet baby, if we could make a choice to ease a no-hope inevitability of a child's genetics. I hope this ethical conversation can continue.
25
I don't mean to be non-compassionate, but wouldn't all children become a ward of the state if both their parents die and there is no one to look after them?
3
Not permanently, no. And many - or most - would have foster parents, rather than institutional care. Even more would never enter state custody, as friends or family willingly would take them in.
6
God Bless You. You did the most ioving thing you could under the circumstances. May you find peace in your heart and soul.
15
Even a newborn or an infant can and should have the benefit of medications to sedate and ease pain and anxiety in these situations. There is no need for there to be any discernible suffering. I do not know how many years ago this happened, but now, there are reasonable ways to help without resorting to outright euthanasia. These were very brave and loving parents. I disagree with one thing, though. An amniocentesis can provide information that can prepare parents for this kind of occurrence, even if they are not accepting of termination. Of course, there is some risk in amniocentesis. No perfect answers.
23
the so called "right to life movement" opposes a woman's right to choose.
but this couple made a choice: by refusing amniocentesis, they chose willful ignorance. they could have thought through their options before Sam was born. During pregnancy, they could have focused on what his life would be like. they would not have been dealing with their own needs and feelings, at least not nearly so much.
but this couple made a choice: by refusing amniocentesis, they chose willful ignorance. they could have thought through their options before Sam was born. During pregnancy, they could have focused on what his life would be like. they would not have been dealing with their own needs and feelings, at least not nearly so much.
27
Death with Dignity should be a legal and widely available option. Full stop.
27
I'm not sure this article was intended as yet one more NYT piece touting physician assisted suicide. However, if it was, then your comment raises a question: do we wish America to become a country where parents are legally entitled to select active killing of their disabled children? A desperately ill infant like Sam could be an example of "hard facts" that make "bad law." What of the child whose disability is less, but still deemed insuperable by the parents? Where would the law draw the line?
As a medically-knowledgeable commenter above noted, Sam's doctors should not have abandoned Sam and his family to just have a nurse withdraw the ventilator tube without proper medication to ease Sam's air hunger and possible pain.
As a medically-knowledgeable commenter above noted, Sam's doctors should not have abandoned Sam and his family to just have a nurse withdraw the ventilator tube without proper medication to ease Sam's air hunger and possible pain.
6
There is a ready distinction to made, at the very least, between a less disabled child and one who is in the process of a painful struggle toward imminent death. And of course, pain medications typically depress respiration, so they are their own slippery slope, from the perspective you have laid out.
1
Such a heartbreaking story. However, the author writes, "Genetic testing is done to allow parents the choice to abort fetuses with severe problems. But your wife would never abort her baby, so there was no point in having the tests performed." This is absolutely not true. Genetic testing gives parents the knowledge and options of how they want to move forward. Abortion can be an option, but so can learning how to be best prepared. To say people who get genetic testing are only those who are willing to have an abortion is simply not true.
69
My premature baby girl died in my arms, while my husband held us both, twenty-two years ago July 17th. Than you for writing this. Thank you. I wish so much I had gotten to keep her, as you wished you could keep your son. Sending peace and prayers to you.
29
The amniocentesis should have been done. The soul does not enter the body until the first breath. Unlike Catholic believe. If the family knows the fetus is with the bad gene, then the fetus should be terminated. To burden a family and child with life-long disabilities in AMERICA with Republicans Not giving money to the needy and the preexisting condition or universal care well then the family needs more education, not religion. Life is the most precious thing. It is part of our soulful evolution, physical evolution to be a better person. The mom did the right thing but it was a little late, but forgivable and the mom will heal.
15
Prejudice against the disabled again. Thanks buddy, it's great to know that children are disposable when you think that the "intervention" of a breathing tube is any different than the intervention of giving birth in a hospital or having your tonsils taken out.
People DO die when their tonsils abscess. People DO die when their sleep apnea causes them to stop breathing in the middle of the night.
Why not just pull everyone's tube? Would you send a bullet to the woman whose child would have died without hundreds of thousands of dollars of medical care, that she paid $500 for?
People DO die when their tonsils abscess. People DO die when their sleep apnea causes them to stop breathing in the middle of the night.
Why not just pull everyone's tube? Would you send a bullet to the woman whose child would have died without hundreds of thousands of dollars of medical care, that she paid $500 for?
3
It is a bit strong to accuse a brave and bereaved parent who accepted the reality that their child cannot live in any meaningful way without the ability to breathe, as being prejudiced against the disabled.
13
Disabled is not the same thing as doomed. Even with the tube, Sam would almost certainly have not survived the year. The kind of medical interventions needed to keep someone like Sam alive amount to torture. They are worth it if there is a chance for recovery, but in Sam's case keeping the tube in was no different than torturing him to death for months.
Frankly, I think most disabled people would be offended by the comparison you just made.
Frankly, I think most disabled people would be offended by the comparison you just made.
9
These parents are being unfairly burdened with the idea that they allowed their baby to suffer.
I'm a physician but not a neonatologist or a neurologist. It's unlikely that the baby experienced any discomfort whatsoever. The struggling to breath and agitation that were observed were likely purely reflexive in nature--produced by the infant's brain stem and not perceived at a conscious level.
The parents are certainly entitled to grieve. But the notion that this infant with profound intellectual disability in the first days of life had conscious thoughts of "this hurts" and "daddy" is totally wrong and the parents should be informed that the baby likely did not "feel" anything at a conscious level.
I'm a physician but not a neonatologist or a neurologist. It's unlikely that the baby experienced any discomfort whatsoever. The struggling to breath and agitation that were observed were likely purely reflexive in nature--produced by the infant's brain stem and not perceived at a conscious level.
The parents are certainly entitled to grieve. But the notion that this infant with profound intellectual disability in the first days of life had conscious thoughts of "this hurts" and "daddy" is totally wrong and the parents should be informed that the baby likely did not "feel" anything at a conscious level.
29
How do you know and how certain can you be?
5
Even if a scan had indeed determined that the brain was undeveloped to the point of not being able to "experience" anything, sedatives should have been administered. This father now thinks he failed his little child. For shame on the doctors.
9
Do any babies have conscious thoughts? Do dogs? Do cats? Does a lack of consciousness mean that an organism can't experience pain?
My question is why Sam could not have been humanely medicated. It's generally accepted that in end of life care some medications might be given for comfort that might, incidentally, also shorten life. Why is a 90 year old man granted that but not an infant?
My question is why Sam could not have been humanely medicated. It's generally accepted that in end of life care some medications might be given for comfort that might, incidentally, also shorten life. Why is a 90 year old man granted that but not an infant?
4
Thank you for writing such an emotional and heart wrenching story. My partner is a Medical Geneticists and makes these diagnoses ffquently. I have a deeper understanding of the dilemmas these diagnoses cause, for her, and for the parents facing such difficult choices. Well written!
8
Hi Gary, what you shared is really heartbreaking. Especially as I think about your little Sam suffering. It should not have happened this way. I have been a neonatologist for many years at Columbia University and I took care of many babies with trisomy 18, so I am aware of their complex needs and of the support needed by their families. For this reason I started a program of neonatal comfort care in my hospital 10 years ago, just to avoid the situation where you found yourself and your precious baby. You stated 'It seems the medical community has few options to offer parents of newborns likely to die.' Not true, there is indeed another possible option. I wish I was there with my team to help Sam live his natural life with NO suffering, it is indeed possible, promise! We could have helped you and your wife bond with Sam and treasure those precious moments. We could have helped Sam enjoy his family's love with good painkillers and facilitate his transition between this life and the mysterious life that follows in a very peaceful fashion. No need to let anybody die nor to kill anybody, only comfort and love. Take care.
36
Elvira - I completely understand you need to share your experience, but your comment only worsens Gary's suffering.
2
No matter how much time Sam would have had, it would have been short and just as painful to witness. Sam's joy was inside his mum's tummy, outside of it, his life was horrendous. Such a moving story.
Perhaps, but it educates any other readers of their options. Nothing can be done for Gary or Sam now, but Parravicini's comment might benefit someone else facing the same situation.
7
Having watched loved ones die at the wrong time, its also important to note the presence of technology can keep just about anyone alive.
Its time to come to terms with that, whether a tragic case such as this one , or simply letting our grandparents die at their appointed time.
One of the reasons our health care system teeters on the edge of insolvency is the blind application of technology, no matter what.
Sometimes its necessary (my father in law in on life 4 I think), and sometimes its just futility wrapped in a bow.
I agree its a tough call.
Its time to come to terms with that, whether a tragic case such as this one , or simply letting our grandparents die at their appointed time.
One of the reasons our health care system teeters on the edge of insolvency is the blind application of technology, no matter what.
Sometimes its necessary (my father in law in on life 4 I think), and sometimes its just futility wrapped in a bow.
I agree its a tough call.
6
I'm sure it's impossible for anyone who hasn't gone through something like what you describe, what you have experienced, to give you any sort of meaningful advice. So, this is not advice, and I have never gone through what you have gone through. I have witnessed the deaths of two cats over the past two years. Both died naturally while the vet staff was preparing to euthanize them. I've always felt that natural death is the best way, even if there is some suffering at the very end. No one who is a compassionate person wants to inflict suffering on a dying being, whether human or animal. However, what do we really know about the dying process, and in particular, what the being him/herself is actually experiencing during those final moments? From the outside it can certainly appear that suffering is taking place. However, it's very possible that by that time the connection between the being's consciousness and body has already been severed. He or she may not actually experience the events that can look so horrifying and painful from the outside. These are my thoughts, for whatever it may be worth. Peace.
6
Or aborted it. Which was opposed by church leaders.
3
This was like reading our own story, our son was named Alex. I hope it has helped to tell Sam's story; I am so sorry for your loss.
17
The impersonal powers of science – though often advanced with good intentions – outstrip our individual capacity for processing ethical issues. What I mean is: we just can’t deal with the array of medical possibilities presented to us sometimes, especially when we are winded or incapacitated by disease or tragedy. What is unnatural and natural is turned upside down. We remember that the very last thing left in Pandora’s box was hope. Why not the respirator? Why not one more cancer treatment? What if? It is human nature to try optimism, especially when we are thinking of children. No parent trying to muddle through these possibilities should be judged. These things would have been decided by what people call Mother Nature or God a hundred years ago and more. I think suffering, beyond pain, is not being able to control your situation. Did Sam think he was suffering? Did he suffer? Can we even ask if he knew he was suffering? I don’t know. We know that his parents suffered. Even if complete understanding isn’t possible, we can try to send them a message of peace and empathy.
8
Ethical issues become simpler when *you* are the sick one.
Parents do suffer when they can't control their children's situations, but do you pull the plug on a child because his parents suffer to see his condition?
Belgium has a euthanasia law for children - when is it okay to say a 5 year old who may only live to age 10 (or 15 or maybe older, but heck, probably not) should be put to sleep because his mom cries to see him get medical treatments?
Do we put cancer patients to sleep because cancer treatment is painful?
Parents do suffer when they can't control their children's situations, but do you pull the plug on a child because his parents suffer to see his condition?
Belgium has a euthanasia law for children - when is it okay to say a 5 year old who may only live to age 10 (or 15 or maybe older, but heck, probably not) should be put to sleep because his mom cries to see him get medical treatments?
Do we put cancer patients to sleep because cancer treatment is painful?
Beautiful.
2
This argument makes a false parallel. A newborn who cannot breathe and has an extremely dire prognoses is not a youngster show "should be put to sleep because his mother cries". What an appalling smear of this couple's terrifying decision.
Have you no decency, Sir? Is your ideology or theology so harsh that you smear a couple who agonized and made a sane and caring, ultimately, decision? I am disgusted.
Have you no decency, Sir? Is your ideology or theology so harsh that you smear a couple who agonized and made a sane and caring, ultimately, decision? I am disgusted.
4
How about another option: palliative care, however short, so that the baby does not have to suffer as he dies. A painkiller, a sedative...these would be offered to a dying adult if he were suffering. Why not an infant in these circumstances?
37
Fortunately, medical care has improved markedly in that direction, as many of the doctors posting here note.
3
So moving. I have no qualms with euthanasia. Somehow, though, I think the parents did the right thing in this case. A tiny bit of suffering, perhaps, but no more. And closure for all, including the baby.
6
Even euthanasia for children with conditions that medical science can't diagnosis with 100% accuracy? Sam had 20 minutes off the respirator. He was alive for less than 2 days. Good grief even if euthanasia were perfectly legal, it would take longer than that to process the paperwork. Heck it takes more than 20 minutes to sign hospital discharge papers, and that's when you're a healthy adult. I could understand your "no qualms" attitude if Sam was 90 and had an incurable cancer that was well known to medicine and he had undergone 3 failed rounds of chemotherapy. But trisomy 18?? An infant 2 days old? If there's one thing people should have qualms about, it's THAT. Oh but I get it - you and many other see euthanasia as something political, so you don't scrutinize it beyond that.
Euthanasia of someone else is the issue. Did the baby say he wanted to die?
Did the family have enough time to decide?
The family didn't die, the baby did.
What percentage is "likely to die"? I was in the hospital for 2 months when I was born; now I have a chronic illness and take many pills. I have significant 24/7 disability and my spouse is my caregiver. Maybe it is better I don't take thousands of dollars worth of medications?
The story is sad because it is useless - you do not pull the plug on the most basic support necessary to live.
The support that *I* needed to survive my first few months of life, when I "likely had brain damage like the MR girl next door, likely had eye damage, likely had lung damage"....
I would have been killed. Because my parents thought I was better dead because of my prognosis? They couldn't tolerate a disabled child?
Did the family have enough time to decide?
The family didn't die, the baby did.
What percentage is "likely to die"? I was in the hospital for 2 months when I was born; now I have a chronic illness and take many pills. I have significant 24/7 disability and my spouse is my caregiver. Maybe it is better I don't take thousands of dollars worth of medications?
The story is sad because it is useless - you do not pull the plug on the most basic support necessary to live.
The support that *I* needed to survive my first few months of life, when I "likely had brain damage like the MR girl next door, likely had eye damage, likely had lung damage"....
I would have been killed. Because my parents thought I was better dead because of my prognosis? They couldn't tolerate a disabled child?
2
In such extremely difficult cases I think the infant's parents (with the input of expert doctors and others they trust) are the ones who should be entrusted with these decisions. Your parents clearly made a wise decision, and I salute them as well as the author of this heartfelt piece.
3
Unimaginable. My deepest and sincerest condolences to you, your wife and your family. There are no words I can offer that would be of any comfort to you. I am sorry.
And, I apologize to you for all of the judgmental comments here suggesting what you should have done. Most people have absolutely no remotely comparable experience, yet think that they can speak on such a subject. You did all that you could do with what you had and where you were at the time.
I do agree with you that humans ought to have the same swift, humane lethal dose of painkiller afforded to owners of dogs.
And, I apologize to you for all of the judgmental comments here suggesting what you should have done. Most people have absolutely no remotely comparable experience, yet think that they can speak on such a subject. You did all that you could do with what you had and where you were at the time.
I do agree with you that humans ought to have the same swift, humane lethal dose of painkiller afforded to owners of dogs.
13
Before being extubated, why was the baby not given a bolus dose of morphine and started on a morphine drip? Doing that would have prevented the horrendous and needless air hunger for baby, and would have prevented the horrorible mental picture the parents now carry around with them for the rest of their lives. Exceptionally poorly done.
23
Hard to understand why this was not done, since this child was in a dedicated Infant ICU. But one has to be very careful and work under protocols tht are widely accepted. A pediatric anesthesiologist at Children's Hospital of Los Angeles has been under investigation for MURDER by a coroner's investigator because she allegedly gave a larger than usual dose of sedative to a dying child who was a no code and expected to die in a VERY short time. after withdrawal of support. The coroner's aide accused her of killing the child quickly so the child's organs would be available for transplant within a thirty minute window of turning off the ventilator and oxygen delivery. . THIS IS A CURRENT CASE reported in the Los Angeles TImes very recently. This was a pediatric anesthesiologist at a TOP Children's Hospital, very experienced in comfort care end of life situations. It is a frightening prospect, as a physician, to be accused of murder for helping a patient to avoid pain and anxiety at the moment of death.
11
My heart aches for you and your family. I can only support the decisions made by you and your wife as I have no idea what I would do in the same circumstances.
5
Thank you for sharing such a painful yet, important, and thought provoking experience . Your thoughtful writing honors Sam's memory and gives important meaning to his short life. Difficult questions to be answered and your experience will, no doubt serve to help others find their own answers.
7
You cannot know how you will feel in this situation. My sister was taken off a respirator in the presence of family at age 60, after 20 years of struggling post-stroke. It did not seem humane to me, even with morphine. It is a difficult choice. What is the difference between morphine (killing) and letting a person die (natural death). Either way it is because you are more afraid of the future that might be, than death.
Removing life support is murder. If we should consider it like self-defense, which is acceptable murder, so be it.
However, amelioration of pain and suffering when someone dies is *totally* different and completely UNrelated to this story. The parents in the story DID kill their baby. They didn't kill him with the least pain however.
Why do people think removal of medical support is not killing? I would die without medical support, and that would kill me.
However, amelioration of pain and suffering when someone dies is *totally* different and completely UNrelated to this story. The parents in the story DID kill their baby. They didn't kill him with the least pain however.
Why do people think removal of medical support is not killing? I would die without medical support, and that would kill me.
Every human being who thinks they have a morally defensive, and simple approach, to life/death decisions based on religious or secular beliefs is denying what it means to be human.
9
Of _COURSE_ one should not let anyone die in pain/torment if their lot (due to genetic anomaly or whatever) is inexorable pain with no chance of meaningful existence. This, therefore, is one of the few straightforward and appropriate venues for liberal use of opioids - to relieve suffering as nature takes it's course...
6
Read up on Bella Santorum, and tell me how they should have pulled the plug on her.
BTW, I am an atheist and a scientist. I just don't like the lack of accountability people have concerning putting the disabled to death.
BTW, I am an atheist and a scientist. I just don't like the lack of accountability people have concerning putting the disabled to death.
2
Philosophy—ethics?—without argument.
But you did have another option - therapeutic abortion. How is it better to have let this baby suffocate to death, when he could have passed from the peace and safety of his mother's womb, never knowing a minute's pain? What is "moral" or "theological" about that completely escapes me. Euthanasia is good but abortion isn't? That makes no sense.
23
This is about the baby's pain. It would have felt it at that late a stage with abortion as well. No good answers here. Only very difficult choices.
PS: I am not anti-abortion.
PS: I am not anti-abortion.
Trisomy 18 is diagnosable before 20 weeks. That's not a late stage abortion. At that age, the baby's nervous system's structure is mostly there, but it's not working reliably. It's not likely it suffers much, if at all, from the abortion.
5
I am so sorry for what this family went through, but why wasn't Sam offered sedation? A natural death does not need to be painful. Our era thinks euthanasia is the solution to all suffering because we believe so strongly in our science. But that's hubris. Chromosome analysis has only been around for maybe half a century. It's pretty much on par with the cordless phone and diet soda in terms of how evolved it is. Misdiagnoses do occur. So do wrong prognoses and lab errors. Yet to hear this author write it, he is rewriting history, believing himself to have had more certainty 20 years ago than he or Sam's doctors probably did. If he had his way now and could have euthanized his son, the thoughts he'd wake up with now could be so much worse: "What if the karyotyping results got switched? What if the doctor was wrong? What if Sam's case was actually mild? What if he'd lived 6 months and a new treatment emerged?" The choices this poor family had were bad enough, no need to make them worse.
The last thing humans need is the "swift humane option afforded the owners of dogs." Never mind how such an option would be quickly adopted by, oh, say, neo-Nazis. I'm mostly worried about it because of the high inaccuracy rates of modern medical science.
The last thing humans need is the "swift humane option afforded the owners of dogs." Never mind how such an option would be quickly adopted by, oh, say, neo-Nazis. I'm mostly worried about it because of the high inaccuracy rates of modern medical science.
1
Gary and family, in my years as a hospice nurse I have seen, in different patterns and presentations, the end of life breathing you describe. It appears primitive and automatic, odd and sometimes frightening, even when the person has had medication to keep them comfortable. The person is typically very unresponsive. Take heart that your son was with you, rocked by you. Despite outward signs, he may very well have been peaceful and felt only love and security, from conception through death. I am sorry for your heartbreaking loss.
17
Yes, we deferred and deferred the 'killing' of two our loved ones...
years later we still regret not assisting them to go more quickly and peacefully.
Thank you for your courage in writing this piece. So many of us know so well what you went through, and how either decision takes a measure of bravery.
years later we still regret not assisting them to go more quickly and peacefully.
Thank you for your courage in writing this piece. So many of us know so well what you went through, and how either decision takes a measure of bravery.
10
Some of that air hunger and respiratory distress might have been eased by the use of small , non lethal amounts of morphine.
9
While the story is certainly one that will raise many eyebrows and/or touch many hearts, I'd like to remind you that no, prenatal testing is NOT entirely about deciding whether to terminate. I recommend it even for patients that would not terminate a pregnancy (sometimes even more so for them) - to know that you will have a child with development problems is to be given a chance to prepare. Parents can learn about their child's prognosis, find support groups, get the appropriate help they need. Being surprised in the delivery room is fun when it's about the sex of the baby, it's not really the ideal place to be surprised about your baby's severe illness.
50
Thank you. OB. I'd like to add that I know at least one friend who learned of a disorder that was partially treatable en utero. So yes, prenatal testing is about more than making a decision regarding termination.
11
This is a tragic and heartbreaking event. Your questions are important and need to be discussed. Thank you for putting this issue before us. You honor Sam by doing so.
13
I am a physician assistant specializing in obstetrics and gynecology. I have practiced for 25 years.
I address the issue of rejecting amniocentesis or chorionic villus sampling because one is entirely opposed to termination. Other benefits include the gift of time in such a situation: time to research the condition, time to prepare oneself and one's family, and time to talk to others with a similarly affected infant.
I address the issue of rejecting amniocentesis or chorionic villus sampling because one is entirely opposed to termination. Other benefits include the gift of time in such a situation: time to research the condition, time to prepare oneself and one's family, and time to talk to others with a similarly affected infant.
42
I would never let my baby suffer horribly if he had no chance of recovering. That is cruel and unusual punishment.
4
Thank you for telling your story. I understand and support your decision to not have prenatal testing or a termination as it was the right choice for you.
Please understand though, that if people opposed to abortion for any reason manage to prevail, others will not have the choice that you did and will be forced to finish out a pregnancy and give birth to a baby they will have to watch as s/he dies.
Please understand though, that if people opposed to abortion for any reason manage to prevail, others will not have the choice that you did and will be forced to finish out a pregnancy and give birth to a baby they will have to watch as s/he dies.
21
May God raise up little Sam and bathe him in His merciful light. May the Holy Spirit be with all who love him and give them the peace beyond understanding. World without end. Amen.
9
I had two cats that I had euthanized because they were very sick and suffering. The vet administered a strong sedative to put them into a deep sleep and then he administered a second drug to stop their hearts. I was with both of them at the time. The vet assured me it was a painless procedure for them. Why can't we euthanize human beings this way when we know there is no hope for survival? When I had my will drawn up I also had a living will drawn up. I told my relatives if anything castrophic should happen to me "pull the plug."
15
yes, this thought occurred to me immediately.
My father had terminal end stage Alzheimer and could no longer eat. So, Dr. offered us the decision, we could put him on life support and a feeding tube and allow him to continue to degrade, but keep him "alive" for a long time.
Alternatively, we could take him to a hospice and have him die of starvation and lack of water. We opted for the latter, and it took him several weeks to expire.
Gotta love humanity in America, and our ability to torture those dying because some celibate senile old man in the Vatican has so decreed that it is a sin to take a life.
My father had terminal end stage Alzheimer and could no longer eat. So, Dr. offered us the decision, we could put him on life support and a feeding tube and allow him to continue to degrade, but keep him "alive" for a long time.
Alternatively, we could take him to a hospice and have him die of starvation and lack of water. We opted for the latter, and it took him several weeks to expire.
Gotta love humanity in America, and our ability to torture those dying because some celibate senile old man in the Vatican has so decreed that it is a sin to take a life.
25
Don't just blame the pope. Blame goes to the 700 Club and their ilk, too.
6
Huh? What does the Vatican have to do with anything? I'm sorry that it often takes weeks for elderly people to "expire," but that's not the Pope's fault. Even if euthanasia were legal, it would have to be regulated, and for an infant especially, the approval process would take more than Sam's entire lifespan; probably even longer than it took your father to die from dehydration.
Otherwise, do you know how many sons and daughters would love to "euthanize" their elderly parents in order to raid their estates? I know because my own dad quickly liquidated the estate of my grandmother when she became "demented" (try being 90 and contesting that diagnosis in a rural county where your dad is a doctor and also on the hospital board, as is the judge, as is the local psychiatrist, it turns out). It was astonishing how easy it was for him to get her stuffed into a nursing home. As far as I can tell, the only thing he wasn't allowed to do was "euthanize" her. She's still kicking, 2 years later. I know, the pro-euthenisai commenters must be disappointed.
The real problem with this article is the author's attitude toward abortion. He decries the 20 minutes his son spent in labored breathing, but refused amniocentesis, because it "wouldn't have changed anything." How does he know Sam wasn't suffering in utero? If the fetus is a person, and if they can suffer in utero, then presumably they can suffer from the myriad insults of Trisomy 18. 9 months is a lot longer than 20 minutes.
Otherwise, do you know how many sons and daughters would love to "euthanize" their elderly parents in order to raid their estates? I know because my own dad quickly liquidated the estate of my grandmother when she became "demented" (try being 90 and contesting that diagnosis in a rural county where your dad is a doctor and also on the hospital board, as is the judge, as is the local psychiatrist, it turns out). It was astonishing how easy it was for him to get her stuffed into a nursing home. As far as I can tell, the only thing he wasn't allowed to do was "euthanize" her. She's still kicking, 2 years later. I know, the pro-euthenisai commenters must be disappointed.
The real problem with this article is the author's attitude toward abortion. He decries the 20 minutes his son spent in labored breathing, but refused amniocentesis, because it "wouldn't have changed anything." How does he know Sam wasn't suffering in utero? If the fetus is a person, and if they can suffer in utero, then presumably they can suffer from the myriad insults of Trisomy 18. 9 months is a lot longer than 20 minutes.
4
@Lonestar: If your grandmother is 92, then your father is about my age. Unless were personally responsible for caring for your grandmother, it's quite possible that you aren't aware of all that what went into the decision to move your grandmother to a nursing home.
My mother needed to move out of her home when she was 90 after a series of debilitating falls, including a fall out of bed that broke her neck. She would never have agreed to have someone come in to live with her, hence the need to move. I was the child who managed the process and she blamed me--treated me as if I were the antichrist. (I have 6 siblings but, conveniently for them, they're out of town for work most of the time or live far away.)
My mother needed money from her estate to be able to afford the move to senior living, which is very expensive, and gets more expensive as time goes by. At this point, after a stroke, we're spending more than $13,500 a month on her care.
When it's your turn, you'll see how complicated it is.
My mother needed to move out of her home when she was 90 after a series of debilitating falls, including a fall out of bed that broke her neck. She would never have agreed to have someone come in to live with her, hence the need to move. I was the child who managed the process and she blamed me--treated me as if I were the antichrist. (I have 6 siblings but, conveniently for them, they're out of town for work most of the time or live far away.)
My mother needed money from her estate to be able to afford the move to senior living, which is very expensive, and gets more expensive as time goes by. At this point, after a stroke, we're spending more than $13,500 a month on her care.
When it's your turn, you'll see how complicated it is.
7
Reading this I thought that Mr. Comstock was fortunate that no politicians knew of this situation. There was no Governor Jeb Bush or President Trump to interject their personal values, religious prejudices or self-righteous certainty into this family's suffering.
22
You've misunderstood the euthanasia debate.
It is not merciful to "let" someone die of asphyxia. What a dreadful experience. My heart goes out to Mr. Comstock. When my time comes, I hope the procedure can be as humane for me as it is for my cat.
9
Ok so you don't mind being euthanized just because you're old and have arthritis? Cats get put down for that. They also get put down because there is no place to house them. I hope you're ok with that too. Cats also get sterilized without their permission. You'll approve of that too, I have no doubt. If only more Americans would!
It isn't your "heart" that should be going out to Mr. Comstock. As. Mr. Comstock described, he already has a very supportive family. What he needs is your wallet, which should be extended to some good malpractice lawyers in Iowa, who can address the issue of why Sam was not sedated during his illness. (If in fact he wasn't.)
It isn't your "heart" that should be going out to Mr. Comstock. As. Mr. Comstock described, he already has a very supportive family. What he needs is your wallet, which should be extended to some good malpractice lawyers in Iowa, who can address the issue of why Sam was not sedated during his illness. (If in fact he wasn't.)
God bless you, Mr. Comstock.
5
I could not imagine what this family must have gone through. I would never be able to make a decision like that and can't even think about having to go through something so terrible. In my opinion there should be more options for families like this to choose from. The only options should not just be hoping for the odds to be in your favor and leaving your baby on a respirator for its whole life, watching your own child die, or to "kill" your child. All three of those choices are probably one of the hardest decisions a parent with a kid with a disability could make. Things should not be like that today, there should be a way for your child to die peacefully without saying you had to kill your own child!
4
Seems to me that the big mistake here was to helicopter Sam to a tertiary care center, which merely prolonged the inevitable, and took Sam's family far away from their support systems.
9
I'm guessing they would have had to do chromosomal testing to make this diagnosis reliably. 20 years ago, maybe they couldn't do that in rural hospitals. By your thinking, it would be ok to give this infant a death sentence without a proper workup?
1
He could have received morphine to dull his respiratory drive, he would have slipped away more peacefully. I'm sorry that you were not offered this...
13
A couple of years ago, a good cat came down with cancer. Lost his zest and wit. Two opinions. Prognosis: pain, pain, pain, death.
Not a hard decision.
He died purring.
Not a hard decision.
He died purring.
11
Yes, keeping him alive would most likely have imposed suffering on the baby, but it most definitely would have prolonged the suffering of this entire family.
4
Nobody killed this poor little baby. He was not meant to live.
My condolences to his family.
My condolences to his family.
14
My heart broke as I read your story. Not just because as a father this was always my worst fear as an expectant parent, but also from having had a stroke at 60 that left me unable to walk or speak. Remarkably I made a full recovery (well 98%, but close enough) but I well remember lying in the ER plotting exit strategies, and being so painfully aware of how limited they were.
I subsequently had a carotid endarterectomy to have deposits cleaned out of the artery going up my neck. I executed a Do Not Resuscitate order before that surgery, because although the procedure is almost routine it can go badly in a few cases. And when it goes wrong it goes very wrong. It was a great comfort to know that I had been able to take control of my destiny, albeit in a limtied fashion.
Gary -- I hope this journey has found you peace, it sounds like it was long over due
I subsequently had a carotid endarterectomy to have deposits cleaned out of the artery going up my neck. I executed a Do Not Resuscitate order before that surgery, because although the procedure is almost routine it can go badly in a few cases. And when it goes wrong it goes very wrong. It was a great comfort to know that I had been able to take control of my destiny, albeit in a limtied fashion.
Gary -- I hope this journey has found you peace, it sounds like it was long over due
9
There is a lot of bad luck in life, and eventually, something awfull happens to everyone. Which is why we extend our compassion to each other.
17
Your decision was sound. I agree, allow nature to take its course.
The option to 'kill', assist, is for only those rare cases of adulthood,,,, for that decision can ONLY be made by that person for him or her self.
The option to 'kill', assist, is for only those rare cases of adulthood,,,, for that decision can ONLY be made by that person for him or her self.
2
Says you. Feel free to make such decisions for yourself, or suggest them to your own family.
For everyone else, let people make their own decisions, with their physicians and their families, and their own set of experiences and beliefs.
To impose your own set of rules or others in a circumstance like this reflects the very worst aspects of organized religion.
For everyone else, let people make their own decisions, with their physicians and their families, and their own set of experiences and beliefs.
To impose your own set of rules or others in a circumstance like this reflects the very worst aspects of organized religion.
2
You may have misunderstood me. Every person must make their own decision. There IS a difference between mom and dad making a decision on a preemie. That infant cannot speak for itself. Mom and dad may have to make that decision. Beyond that,,,, no government,,, no judge,, just what you decide. My life is uniquely mine. It is only my decision. And that may well include the person I have designated to understand my wishes, and carry them out.
I have been that designated person for my two parents. I have made those choices. I know the problem. And no government, church, or judge told me what to do, neither did I ask for permission. I did exactly as I was told. Not easy. My children have been carefully told what my wishes are.
I want a sailboat, and pointed out into the Atlantic, heaven on Earth. Best way to spend those last few days or hours.
I have been that designated person for my two parents. I have made those choices. I know the problem. And no government, church, or judge told me what to do, neither did I ask for permission. I did exactly as I was told. Not easy. My children have been carefully told what my wishes are.
I want a sailboat, and pointed out into the Atlantic, heaven on Earth. Best way to spend those last few days or hours.
2
No they should of given your baby some morphine to comfort him You did a courageous selfless thing The most important thing is he was held and loved
6
Here is another story. In the early 1970's your son is born with a fatal condition, biliary atresia, confirmed by an operation. He has no tube draining the waste from his liver to his intestines. He will live in pain and then die within a year.
You search the world for a possible cure and find one in Japan: an operation which replaces the tube, but must be done within 90 days of birth. The surgeon there agrees to do it, but urges speed.
Your surgeon here says the baby must first have another operation here or he will never be able to survive the trip. You reluctantly agree. That operation is performed, delaying things.
You fly to Japan on the 92nd day. The plane is met at the airport, on the runway, by the surgeon in an ambulance, who takes you directly to the hospital where the operation is performed.
Despite heroic efforts in Japan and later in the US, the baby dies after 11 months. But 2 things:
1. There is publicity and within months they are performing the operation successfully here and;
2. The Japanese operation reveals that 2nd operation in the US was needed because the original surgeon had replaced the intestines in a way make the baby die earlier to "save" the baby and parents misery. He tried to correct his earlier action, but could not.
Until now you don't make public 2. but do now to point our how complex these questions are.
You never take action against the US surgeon. He had to live with his action, as do we all..
You always remember.
You search the world for a possible cure and find one in Japan: an operation which replaces the tube, but must be done within 90 days of birth. The surgeon there agrees to do it, but urges speed.
Your surgeon here says the baby must first have another operation here or he will never be able to survive the trip. You reluctantly agree. That operation is performed, delaying things.
You fly to Japan on the 92nd day. The plane is met at the airport, on the runway, by the surgeon in an ambulance, who takes you directly to the hospital where the operation is performed.
Despite heroic efforts in Japan and later in the US, the baby dies after 11 months. But 2 things:
1. There is publicity and within months they are performing the operation successfully here and;
2. The Japanese operation reveals that 2nd operation in the US was needed because the original surgeon had replaced the intestines in a way make the baby die earlier to "save" the baby and parents misery. He tried to correct his earlier action, but could not.
Until now you don't make public 2. but do now to point our how complex these questions are.
You never take action against the US surgeon. He had to live with his action, as do we all..
You always remember.
15
This was a moving story until the last three paragraphs, when the author seems to make the repulsive and horrifying suggestion that the answer to the problem of children suffering at the end of life is to have them euthanized by doctors.
Turning doctors into killers is not the answer to any problem.
The Holocaust in Europe began with a program of euthanasia of sick children by doctors in German hospitals. It was called the Aktion T4 program.
https://en.wikipedia.org/wiki/Aktion_T4
Everyone knows how that ended.
The answer to the problem of suffering at the end of life is not killing, it is palliative care, hospice care, and palliative sedation. Euthanasia, particular of those who cannot consent, is far too dangerous and it is unnecessary.
Turning doctors into killers is not the answer to any problem.
The Holocaust in Europe began with a program of euthanasia of sick children by doctors in German hospitals. It was called the Aktion T4 program.
https://en.wikipedia.org/wiki/Aktion_T4
Everyone knows how that ended.
The answer to the problem of suffering at the end of life is not killing, it is palliative care, hospice care, and palliative sedation. Euthanasia, particular of those who cannot consent, is far too dangerous and it is unnecessary.
7
If your wife opposed abortion, wouldn't she have also opposed assisted death?
7
Bless you.
4
Giving a dose of morphine to ease suffering while dying is NOT the same as euthanasia. There's no need to bring euthanasia into this conversation at all.
23
It is a sad story. However, some of the sadness comes from ignoring modern medicine and deciding that it is morally superior to have a baby die over an embryo dying. It is possible to have a diagnostic CVS test in the first trimester, and a non-invasive NIPT at 10 weeks. At that point, the pregnancy is still at an embryonic state. It is morally abhorrent in my mind to complain about not being able to kill a baby that is born (and that looks to have died possibly painfully of suffocation), but refusing to painlessly end the existence of a clump of cells.
24
I agree. It seems immoral to me to permit suffering that could be avoided by using available medical knowledge. This applies in general to prenatal diagnosis of severe genetic disorders. Morality would seem to favor early termination of such pregnancies.
2
I am so sorry that you and your wife had to go through that! And I'm more sorry that your baby Sam had to suffer like that which to you must have seemed like an eternity! Life is cruel at times, no question. Why is it that we wouldn't allow our pets to suffer at death but can't do the same for a helpless baby?
5
Or an adult, who should have the right to choose?
Of course, less profits for the medical industry, may be one reason.
But to me it's lunacy that people, once informed of the alternatives and consequences, can't make up their own minds about the whole process.
We live in a country where dollars for medicine are far too few to fill the demand (and end of life care is HORRENDOUSLY expensive). WHY in the world do we force many more dollars to be spent, where they aren't even wanted?
Religious best intentions? Guilt? Certainly not rationality, or respect for peoples' wishes.
This is an example of madness we can and should fix. But do we have the will as a society?
(I'm not saying people who want to fight all the way shouldn't be allowed to. I'm ONLY saying the people who would rather not do all that fighting and suffering for things like a painful terminal disease should NEVER be pressured to do so).
Of course, less profits for the medical industry, may be one reason.
But to me it's lunacy that people, once informed of the alternatives and consequences, can't make up their own minds about the whole process.
We live in a country where dollars for medicine are far too few to fill the demand (and end of life care is HORRENDOUSLY expensive). WHY in the world do we force many more dollars to be spent, where they aren't even wanted?
Religious best intentions? Guilt? Certainly not rationality, or respect for peoples' wishes.
This is an example of madness we can and should fix. But do we have the will as a society?
(I'm not saying people who want to fight all the way shouldn't be allowed to. I'm ONLY saying the people who would rather not do all that fighting and suffering for things like a painful terminal disease should NEVER be pressured to do so).
2
You had the option to "kill your baby"; you had the option for him to have a quick, nearly instantaneous death when he was about 4 inches long, in utero. "Shouldn't we have a choice?" you ask. You did have a choice. Your child's abnormality most likely would've been detected by amniocentesis, and you could've chosen to have an abortion at approximately 15 weeks. Paradoxically, your wife opposed the kinder pre-birth death on "theological and moral grounds" but was willing to allow him suffocate to death once he was born.
19
perfectly said.
My heart goes out to this family.
My heart goes out to this family.
Having spent 25 years in the care of preemies and of babies born with profound anomalies, what makes the difference is when the doctors possess the verbal skill to describe the life of a profoundly ill infant, a baby whose lungs, and then, heart and kidneys and liver begin to fail. The doctor's ability to describe the prolonged medical agony, describe the fate of a tiny family careening from one calamity to another -- the doctors I've known that have possessed that skill, have been the biggest help when parents of such infants are faced with such a terrible choice. The doctors who say to such parents, "His lungs may be damaged, but really, you never know for sure. . " such doctors are doing the parents a disservice. More than once, I've encountered the parents of former patients at the grocery store, at the mall. They looked harried and exhausted, and they felt they were mislead by us caregivers when we didn't really bother to describe what lay ahead for them.
10
Thank you.
3
Assisting a very sick patient to die, once we recognize that nothing we may do will make a difference...other than adding to the bill and the suffering of the child and the family, is the right thing to do, however difficult emotionally (given we could more readily be able to analize a situation deemed hopeless when unrelated to him/her).
4
Rarely parents kill their baby. Infanticide is sometimes done in very dire social circumstances or caused by mental issues. In this article the verb 'killing' is highly inappropriate.
Bringing in God is also disturbing to me. God, yes, the cruel one, who pulls the strings of every life on earth at will, probably with a mysterious smile on his face. Pleeeease!
No doubt this baby should be allowed a dignified death.
Bringing in God is also disturbing to me. God, yes, the cruel one, who pulls the strings of every life on earth at will, probably with a mysterious smile on his face. Pleeeease!
No doubt this baby should be allowed a dignified death.
4
A'men.
While my guinea pig Pancake, that I loved, was put to death in a process that can take "a lot of time," according to the vet (45 minutes), my close friend's mother who had had a massive stroke, was unresponsive, hadn't been fed for weeks, with each her children sitting vigil 24/7 in a rotating schedule, so someone would be with her when death finally came, took almost three solid weeks to die. I agree with you completely, Mr. Comstock, there should be another way.
7
The sweet soul that was your baby is at peace now. Please take some solace in that you did the right thing.
2
I do not wish to add to this father's grief or that of his wife. But as an older parent of two children conceived with help, I disagree with his characterization of amnio and other genetic testing as an automatic off ramp to abortion. I used amnio to help me understand what would happen should I have a disabled or ill child. I reasoned that I would far rather confront my fears and lack of knowledge before birth, and be able to prepare for any potential risks at birth. I felt I could gain the strength and knowledge and support of others before birth, and have birth be a more joyous event. I agree with his final conclusion, when the outcome is absolutely negative, it would have been better for his doctors to eliminate this agonizing death process.
5
There is no right decision in these circumstances. Ever. There are only a collection of awful, heart wrenching and painful decisions.
Death will always be the worst result for each of us despite the pain and horror that we experience of this life. Life is still a miraculous gift. The confluence of events and circumstances required for any life is astounding it is a wonder so many of us achieve it and maintain it for so long. To tell a parent you know better when they must make the worst decision of their life is arrogance and ignorance.
There is no right decision. There is only compassion and love. You don't need to accept the decision of another person or make the same yourself but you can not ever presume to have made the right decision.
There must however be a better way to ease the suffering of babies like Sam. We have a wealth of medical tools in our reach with which to relieve the physical pain of people in these last moments of their life.
There is no right decision.
Death will always be the worst result for each of us despite the pain and horror that we experience of this life. Life is still a miraculous gift. The confluence of events and circumstances required for any life is astounding it is a wonder so many of us achieve it and maintain it for so long. To tell a parent you know better when they must make the worst decision of their life is arrogance and ignorance.
There is no right decision. There is only compassion and love. You don't need to accept the decision of another person or make the same yourself but you can not ever presume to have made the right decision.
There must however be a better way to ease the suffering of babies like Sam. We have a wealth of medical tools in our reach with which to relieve the physical pain of people in these last moments of their life.
There is no right decision.
2
Something strikes me as off with the piece. Can a pediatrician weigh in here? It paints terminal extubation for the neonate as barbaric, as simply a matter of pulling out the tube. But terminal extubation is never done this way (at least in the adult population; I can't imagine it conducted any differently in the pediatric population). Great effort is made to ensure that the process of terminal extubation is as painless as possible. This means titrating sedation actively such that any outward sign of suffering (gasping for air, writhing in discomfort) is eliminated. What is shown here is in every respect wrong.
In other words, the title and end thought is based on a misguided distinction. There is not this huge chasm that separates letting someone die now in comfort by withdrawing care and physician assisted death. In fact, what the father wishes for in the end is exactly what should have happened in an attempt to let the child die comfortably. Not killing his child, which suggests something sinister and injects, thus, something completely off kilter into this story, as if from left field.
In sum, I understand the sentiment, but the way it's spun out in this heart-wrenching way is muddled in inaccuracy on what medicine can and does provide now, creating, again, distinctions that are provocative but that don't exist. This is unhelpful, then, for either side.
In other words, the title and end thought is based on a misguided distinction. There is not this huge chasm that separates letting someone die now in comfort by withdrawing care and physician assisted death. In fact, what the father wishes for in the end is exactly what should have happened in an attempt to let the child die comfortably. Not killing his child, which suggests something sinister and injects, thus, something completely off kilter into this story, as if from left field.
In sum, I understand the sentiment, but the way it's spun out in this heart-wrenching way is muddled in inaccuracy on what medicine can and does provide now, creating, again, distinctions that are provocative but that don't exist. This is unhelpful, then, for either side.
12
You're right that sedation is supposed to be provided - and in fact patients almost always have to be sedated even while they're ON a respirator because otherwise they fight the tube. The situation as described in this story seems strange.
1
Perhaps this was handled differently 20 years ago.
Many newborns are removed from life support each year in the US and allowed to die. Reasons for this depend on the medical condition, but the decision to do so is usually a joint one between the family and the medical team. Typically the care being provided in these cases is deemed to be prolonging the inevitable (and therefore condsidered useless therapy) or the prognosis for the baby is so dire that withdrawl of life support is considered the best course of action. While medical providers are not allowed to practice active euthanasia, we can administer medications to make sure the dying process is a peaceful one and above all, ensure that the baby does not suffer.
9
A horrible wrenching decision to make, but to me the right one. And yes, you should have been able to give him drugs to die peacefully. having watched elderly patients die from morphine, it is quiet and dignified. Your sun suffered for no reason other than the religious beliefs of others. It is criminal
11
Heartwrenching.
2
As an oncologist, I had innumerable end-of-life discussions with patients. Once a medical student asked me afterwards, "does that get any easier with practice?".
I responded "I would surely hope not."
I responded "I would surely hope not."
13
This is a tragic and moving piece by someone who has suffered enormously. It seems to me, however, that the best way to avoid suffering for tragic infants like this one is for the mother to have some form of genetic testing done prior to the birth. Surely this infant would have suffered less--as would all those in his extended family--if the pregnancy had been terminated. The weighing process is not abortion on one side versus life on the other. The weighing process is abortion on one side versus a suffering death on the other. It seems beyond argument that terminating the pregnancy would have led to less human suffering than forcing the infant to go through this produced. In any event, I find it inconceivable that someone as opposed to abortion as the mother of this infant could ever agree to euthanasia, so presumably this option, even if available, would not have been possible here.
20
Gary, I completely understand why you feel that way. It's understandable. Now that you've been through it, you would have preferred to give the baby a shot of some kind. I empathize with your pain.
It's ironic. Just like we don't always know what to do as a parent - whether our child is two or five or ten --- the same goes for a very sick newborn. We are often stumped. I'm very sorry for your pain.
It's ironic. Just like we don't always know what to do as a parent - whether our child is two or five or ten --- the same goes for a very sick newborn. We are often stumped. I'm very sorry for your pain.
7
No. Here's another potential point of view: certainly not all babies are born without some problems, genetic or otherwise. Some become miscarriages, even very early on. It's part of nature, which in its effort to create strong, fit beings that will continue the line and possibly improve it over time, lets the less perfect go. If you lived during the Paleolithic or Neolithic, there would have been no guilt, only grief. As for Sam, it's possible that the being that was born as Sam lived exactly long enough to learn what he needed to in this life. It may be that he got just what was right for his needs, including the agonizing 20 minutes. You feel terrible you allowed him even an instant of pain. But for him, that 20 minutes was life, was living, was proof of having a life. You took nothing away from him during his short life, but instead allowed him the mystery of his own experience while giving him love. How can that not be the best choice? We ache at others' suffering. That's our compassionate nature, and our lesson. He gave you that heart lesson in exchange for his short life. Beautiful. Worthy of wonder, of tears, of love, and of joy.
14
Thank you, Gary Comstock.
4
So tragic. Blind faith also leads to suffering of the innocent. But there was no easy way past this wall.
3
Very sad story, to be sure. But I am genuinely confused why the writer's wife was opposed to abortions on "moral and theological grounds" but not to pulling the breathing tube of their child? This kind of thinking about abortion seems incredibly simplistic and in this case led to great (and probably greater) suffering for everyone involved. The writer gets part of the way there but not all the way.
22
A difficult story, to be sure, but one needs to leave the emotions by the side (which is why philosophers are such fun at parties, right?).
We live in a world where much of health care and the desires to advance health care (research, etc.) are not focused upon assisting with or providing "good health," but instead are focused upon prolonging life, which might be instead be termed as trying to avoid death.
Hence, death is bad, is unwanted, is something to be avoided at all costs. It is only natural, sure, yet (1) we all die, and (2) sometimes death is a mercy.
Many people take issue with (2), to the point of irrational, unreasonable, over-my-dead-body stances.
I won't argue this case for the author seems to have hit upon what might have been the best course, although as implied, there is no agreed upon (never mind controversial) means for ending a life.
And there should be. That choice should be available because yes, sometimes it is humane to "kill."
We live in a world where much of health care and the desires to advance health care (research, etc.) are not focused upon assisting with or providing "good health," but instead are focused upon prolonging life, which might be instead be termed as trying to avoid death.
Hence, death is bad, is unwanted, is something to be avoided at all costs. It is only natural, sure, yet (1) we all die, and (2) sometimes death is a mercy.
Many people take issue with (2), to the point of irrational, unreasonable, over-my-dead-body stances.
I won't argue this case for the author seems to have hit upon what might have been the best course, although as implied, there is no agreed upon (never mind controversial) means for ending a life.
And there should be. That choice should be available because yes, sometimes it is humane to "kill."
6
It's never humane to "kill" a neonate! Good grief - Sam's diagnosis was trisomy 18. Look in a medical textbook and you'll see - this condition is not well understood. Are you aware that Watson and Crick described the structure of DNA only in 1953? Watson is still alive! That's how new and unreliable chromosomal science is. 20 years ago a diagnosis of Trisomy 18 was probably based on nothing more than the clinical signs, including the low set ears and proximal thumb. Even an expert could be wrong.
A misdiagnosis can be corrected, but euthanasia cannot. Neonates have no one to advocate for them other than their parents and doctors, and, one hopes, society and its laws. Readers of the NYT are colossally ignorant if they believe medical science is so advanced that we can count on it to guide the euthanasia of infants. What a horrible thought.
This discussion also reminds me of the misguided enthusiasm for DNR orders (Do Not Resuscitate) I witnessed as a medical student on my rotations. Everyone from infants to the geriatric was encouraged to get a DNR order. Cloaked as being the "humane" option, what it really did was make life easier for the on-call doctors. As it turns out, DNR only makes sense for the elderly and the terminally ill. The rest of us, the young people who have a shot at life, really ought to be able to hope that when we go into a hospital, someone will try to save us. This should be as true for Sam as anyone else.
A misdiagnosis can be corrected, but euthanasia cannot. Neonates have no one to advocate for them other than their parents and doctors, and, one hopes, society and its laws. Readers of the NYT are colossally ignorant if they believe medical science is so advanced that we can count on it to guide the euthanasia of infants. What a horrible thought.
This discussion also reminds me of the misguided enthusiasm for DNR orders (Do Not Resuscitate) I witnessed as a medical student on my rotations. Everyone from infants to the geriatric was encouraged to get a DNR order. Cloaked as being the "humane" option, what it really did was make life easier for the on-call doctors. As it turns out, DNR only makes sense for the elderly and the terminally ill. The rest of us, the young people who have a shot at life, really ought to be able to hope that when we go into a hospital, someone will try to save us. This should be as true for Sam as anyone else.
There is a world of difference, literally, between "killing" someone, on the one hand, and helping them to have a painless death, on the other- a death which is inevitable. By framing that help as killing someone, this article, which is otherwise decently written, actually argues against what would in fact be the humane thing to do- help this child to die painlessly instead of gasping for breath.
Since our genetic code is far from perfect, we will sadly have the opportunity to visit this cradle of death again and again.
Since our genetic code is far from perfect, we will sadly have the opportunity to visit this cradle of death again and again.
10
For millennia parents have endured the most painful task imaginable, comforting their dying child. Until the last tick in the evolutionary clock, this has been done without medical technology. Your son was lucky to have you as a father. You showed great courage. You have done nothing wrong. You must now move away from your own suffering.
11
Sometimes unimaginable outcomes become at once imaginable, terrifying, and heartbreaking instantly as this profoundly moving narrative so brutally does. Can we imagine or even believe that this child felt pain, fear, discomfort in those last moments? Would we feel any differently if we knew with any degree of confidence that he did not? I do not think I would, but I'm not sure if that question is answerable, or even relevant.
There are couples who do have amniocentesis and thus find out earlier than the Comstocks about a tragic diagnosis. Some of them decide to abort at that point, also a wrenching, horrible decision. The writer says he and his wife believed that aborting was beyond consideration because there is “a difference between killing your baby and letting him die.” However, some people might conclude that, for the sick baby anyway, that moral stance is a distinction without a difference, and dying at an earlier stage of neurological development would have been more humane. One family might conclude that leaving the decision to God is correct, while another family might conclude that not taking action is simply avoiding responsibility.
My point is not that what the Comstocks did was wrong. I respect their difficult heartbreaking choices. But the woman who decides to terminate a pregnancy because of severe birth defects, happening of necessity at a stage later than anyone would wish, also deserves our sympathy and support. She does not deserve vilification and censure, which is what many people offer.
My point is not that what the Comstocks did was wrong. I respect their difficult heartbreaking choices. But the woman who decides to terminate a pregnancy because of severe birth defects, happening of necessity at a stage later than anyone would wish, also deserves our sympathy and support. She does not deserve vilification and censure, which is what many people offer.
34
Yep. Assigning a moral difference to the simple distinction of "killing" versus "letting die," without more, is weak thinking and does not stand up to logical scrutiny. Unfortunately, conservatives, republicans, and the religious right insist on seeing a difference...simply because it results in less autonomy for the individuals who suffer as a result. The reduction in autonomy is a feature, not a bug.
Philosopher James Rachels provides a useful primer on the subject.
Philosopher James Rachels provides a useful primer on the subject.
5
A baby, not mattering the natter of religious folk, is not fully formed upon entry into the world. A baby fawn is totally reliant upon his mom for survival. If he is not able to survive - his mother has no resource to offer sustenance. This is true of the entire natural world - excepting that world where humans attempt to intervene. Even then, nature takes its course. Surely, humanity seems to think it has grander jurisdiction over all within its world. But, it does not. Such arrogance creates heartbreak and dissatisfaction amongst all.
Your choice, was a parent's choice, and should have been such. All beings are forced into life without choice. Surely, those who are supposedly capable of logical thought, can justify accepting the inevitability of the end and make it easier. You and your family are extremely brave - and humane.
Your choice, was a parent's choice, and should have been such. All beings are forced into life without choice. Surely, those who are supposedly capable of logical thought, can justify accepting the inevitability of the end and make it easier. You and your family are extremely brave - and humane.
3
I don't really understand your wife's position that she wouldn't have aborted a fetus no matter what the abnormality showed, but she was ok with allowing the baby to die once it was born with those abnormalities. Is there really a meaningful difference between ending a pregnancy because you know the baby will die shortly after birth, and letting the baby die once it's born?
I mean, I can get that the former stance (no genetic testing no matter what!) was easy to make before all this happened. But I wonder that given another chance, she would have made the same choice to refuse testing.
I mean, I can get that the former stance (no genetic testing no matter what!) was easy to make before all this happened. But I wonder that given another chance, she would have made the same choice to refuse testing.
16
Heartbreaking
1
When an elderly person is dying, doctors often give high doses of painkillers so that they do not suffer in the process. Is this not an available option for a baby? Seems so cruel, for the baby and the parent.
8
I have volunteered at a women's health clinic that runs a highly regarded fetal anomaly program. This allows couples like this one who actually had made the wrenching decision to terminate the pregnancy to do so with physicians and professional counseling help. Most, like this couple, were deeply religious, opposed to abortion prior to their situation and referred by ministers and medical doctors. The Georgia legislature passed laws to restrict abortion after the first trimester. At that point we would have to refer couples out of state, almost exclusively to the incredibly compassionate Dr. Tiller in Wichita, Kansas - until he was murdered during Sunday services in his church.
The compassion and human insight shared by this man in his time of trial IS truly courageous. And hopefully he can help us keep medical abortion safe and legal for couples just like him and his wife. You don't want governments and law enforcement making those most personal, painful and deeply held decisions for you. It should remain you and your wife's choice.
May your son Rest In Peace and may you, your wife and your family all find comfort. Grief is the price we pay for love.
The compassion and human insight shared by this man in his time of trial IS truly courageous. And hopefully he can help us keep medical abortion safe and legal for couples just like him and his wife. You don't want governments and law enforcement making those most personal, painful and deeply held decisions for you. It should remain you and your wife's choice.
May your son Rest In Peace and may you, your wife and your family all find comfort. Grief is the price we pay for love.
36
There are many such genetic disorders.
My daughter's fetus was not developing properly, and tests showed it was triploid. This means it has an extra copy of all 23 chromosomes, so instead of the diploid 46 chromosomes it had 69 chromosomes.
This fetus could maybe have made it through pregnancy, but would not have survived much beyond birth, and so she elected to terminate the pregnancy. The fetus died before we got to the clinic. My daughter felt nothing but relief afterwards.
I am grateful that we live in a state that allowed her to have the option of terminating this pregnancy, and I am grateful that we also have the option of removing terminal, suffering patients from life support.
My daughter's fetus was not developing properly, and tests showed it was triploid. This means it has an extra copy of all 23 chromosomes, so instead of the diploid 46 chromosomes it had 69 chromosomes.
This fetus could maybe have made it through pregnancy, but would not have survived much beyond birth, and so she elected to terminate the pregnancy. The fetus died before we got to the clinic. My daughter felt nothing but relief afterwards.
I am grateful that we live in a state that allowed her to have the option of terminating this pregnancy, and I am grateful that we also have the option of removing terminal, suffering patients from life support.
31
My mother lost her firstborn before I was born and it haunted her until her death some 70 years later. She could not revisit those days without PTSD like symptoms of reliving the events and the decisions that were made. There is a time for society to step away from the most vulnerable and personal choices that we will ever make as human beings. And this is a perfect example.
15
NYer, Step away and do what?
I think NYer means to for society to step away and let the parents make their own "choice."
I'm very sorry for your loss and your suffering. You will help people by sharing these difficult thoughts and memories. You've been brave. I wish you and your family the best.
17
Perhaps the last sentence is a bit harsh. The choice between "letting your baby die" and "killing your baby" feels stark. The option you seek is to help your baby die, painlessly. Your baby's life was but a moment, and death was imminent. You desire to help your baby live that short life, and die, as painlessly as possible.
113
This precisely is the struggle. Semantics don't help. Honesty and straightforward talk do help. Great article. Great wake up call for all of us.
11
If we are willing to kill, why are we so squeamish about admitting what we are doing and what we have become?
My hair stylist gave birth to a baby girl and something went terribly wrong. She and her husband had to make a quick decision. Fast forward 20 years. Her daughter is alive but profoundly retarded. Abby has never told her mother she loves her. Alas she has never spoken. She eats by feeding tube. Her parents quickly divorced under the strain of her care. Mom, hoping to be able to keep her at home a little longer, allowed her daughter to have hormone treatments to keep her small and a hysterectomy because that part of her progressed normally. Abby has been institutionalized for over ten years now. Mom loves her and has remarried but sometimes says that she wished long ago she had decided differently and then feels guilty. For those wishing God to decide, he made the sad decision but we intervened. On another tragic note, that thank God is rare, an attendant at this highly respected facility was convicted recently of raping some of these helpless, unable to cry out residents.
16
I have Catholic friends who refused amniocentesis. Their child has Down Syndrome and has suffered a great deal from cardiac and bowel issues. The parents' insistence that their beliefs are more important than their child's potential lifelong suffering is, to me, the height of selfishness. Right from the beginning they put themselves and their needs ahead of hers.
70
1) Kathy, those are not "friends" of yours, or at least you are not their friend.
2) What a terrible thing to say about someone with Down Syndrome. Many people have cardiac and digestive issues, and yes the prevalence is higher among those with Down Syndrome but unlike Trisomy 18 the vast majority of those born with Down Syndrome live long, happy lives full of meaningful relationships and even meaningful life's work. Shame on you, seriously.
2) What a terrible thing to say about someone with Down Syndrome. Many people have cardiac and digestive issues, and yes the prevalence is higher among those with Down Syndrome but unlike Trisomy 18 the vast majority of those born with Down Syndrome live long, happy lives full of meaningful relationships and even meaningful life's work. Shame on you, seriously.
4
@AMR: You know nothing about the precise circumstances and the degree of suffering of the child or the parents described in @kathy's comment. Shame on you, seriously.
10
If people didn't have this irrational fear of life-after-death, this whole thing could have been avoided, because the mother would have had an abortion. But because of this fear, many people think abortion is wrong, when in fact it is one of the most loving things a parent can do: to not bring an unwanted, unplanned, and in this case, deformed, child into the world. Hey, we're all going to die, and multi-millions of us have already done so, so why the fear?? Ah yes~ the real enemy of sanity is called Religion, it's the great promoter of fear of life-after-death.
48
Indeed, rational public policy should accord no respect whatsoever to any claim that any form of idolatry will alter anyone's post mortal eternal oblivion.
1
The writer notes that ultrasound and genetic testing are offered to allow parents the choice to abort festuses. The written is mistaken. Tis is only one of the reasons such testing is offered. Testing also offers the opportunity to prepare for heroic medical treatments and immediate measures that may be needed to save a baby's live in the event of a severe medical problems at birth (eg. in the event of severe heart conditions), in which case, the testing offers the opposite opportunity to parents to birth their babies and plan for their treatment. People need to know this important fact.
31
Thank you, Gary, for sharing your elegantly written and very moving story about your baby, Sam. Twenty-eight years ago, my fourth daughter died in the same way of birth defects that are rarely compatible with life. I am an RN and worked in my hospital. When the neonatologist discussed our options, I ordered the NICU not to perform any resuscitations or transfer her to our local children's hospital. Thankfully, our baby never left our side and she died in my arms. There is a valuable aspect of amniocentesis that allows a couple time to research their child's defect, their options and develop treatment plans. Knowing ahead of time allows the blow to soften a bit as well. Also, when a baby dies today, we administer morphine to ease the air hunger. Your brother was right....your decision was courageous. You released Sam to heaven. God bless you.
207
According to Roman Catholic doctrine, fetuses that die in the womb go automatically to Heaven because they didn't commit the "original sin" of getting born.
1
I wept as I read this story and I fully understand the ethical dilemma involved.
My siblings and myself went through a version of this situation with my mother. She was in a coma; septic with all of her organs shutting down. She had no chance for a normal life even if she were to awaken. But, it's a very different situation when someone has lived a long and productive life.
We made the decision, guided by her physicians, to terminate her life support. We were warned that occasionally the patient struggles and gasps for air. However, she drew a last breath and mercifully, it was over.
I cannot imagine what we would have done if she had struggled to breath for even 5 minutes, let alone 30.
You made a courageous decision but you are correct: The medical profession should have been pro-active in ending Sam's last awful moments on this earth. Perhaps in a far away universe of true enlightenment, mercy will become the standard!
R I P, “Sam, Sam, the Little Man.”
My siblings and myself went through a version of this situation with my mother. She was in a coma; septic with all of her organs shutting down. She had no chance for a normal life even if she were to awaken. But, it's a very different situation when someone has lived a long and productive life.
We made the decision, guided by her physicians, to terminate her life support. We were warned that occasionally the patient struggles and gasps for air. However, she drew a last breath and mercifully, it was over.
I cannot imagine what we would have done if she had struggled to breath for even 5 minutes, let alone 30.
You made a courageous decision but you are correct: The medical profession should have been pro-active in ending Sam's last awful moments on this earth. Perhaps in a far away universe of true enlightenment, mercy will become the standard!
R I P, “Sam, Sam, the Little Man.”
24
Most Americans who die under hospice care spend up to several days gasping in what what is called "Cheynes Stokes respiration" mode before it happens.
1
I'm so sorry for your loss. For other readers, I remember my OB urging me to have amniocentesis even though I would never choose abortion for myself (but don't impose my choice on others). I also felt it was pointless since I wouldn't take action. My wise doctor suggested that knowing something was wrong was a good idea. It gave me months to get used to what was to come and formulate a plan. She suggested that we didn't even have to tell anyone until our child's birth, if we wanted our decision to remain private. I really appreciated her counsel.
15
intense. I can't but agree with you. To hold this forever marks one.
4
I can't imagine the depth or breadth of your pain, and if I believed in or knew how to pray, I would pray for you, your wife, and Sam.
What I can definitively say is this: any politician, any theologian or ethicist, any well meaning but without germane experience friend, anyone who thinks they have a right to decide issues akin to yours, should have to read what you wrote before they interject themselves into the discussion. Perhaps then they would have the humility to acknowledge that they cannot possibly have anything useful to say other than how can we help you do what needs to be done, as you need it and as you see it.
What I can definitively say is this: any politician, any theologian or ethicist, any well meaning but without germane experience friend, anyone who thinks they have a right to decide issues akin to yours, should have to read what you wrote before they interject themselves into the discussion. Perhaps then they would have the humility to acknowledge that they cannot possibly have anything useful to say other than how can we help you do what needs to be done, as you need it and as you see it.
27
Please don't take up praying. It is a bad habit invented to reinforce the delusion that nature has a personality with ears to hear it and emotions to respond to it.
2
Steve Bolger - as unnecessary and bad a habit as praying is, at least it keeps a lot of people from putting their florid, irrational thoughts into written or spoken words that have to be heard by the rest of us.
What a horrible experience for these parents, may they find peace with this in time. I thank the author for bring to light the often nebulous situation in which the patient, a newborn, is unable to give consent for medications that may give the passing of his or her own life easier. Many states allow the removal of life support but not the administration of medications even when the disease state is terminal. (this is in adults) In some states, the patient themselves have to give consent for this, totally ignoring what happens to the young. I hope that this story reaches the eyes and ears of the lawmakers.
9
No baby volunteers for birth with informed consent.
1
The right to refuse medical intervention, including the withdrawal of intervention necessary for maintaining life, is recognized at the federal level, so no State can refuse to "allow" it. For patients unable to make the decision for themselves, states have a variety of approaches permitting the decision to be made on the patient's behalf--that is, to refuse or remove medical intervention, by proxy. The test is always what would the patient want, if he or she were competent to make and communicate the decision. The New Jersey case of Karen Ann Quinlan was a pioneer in this area, 40 years ago.
It is true that a handful of states now permit some form of doctor-assisted drug-induced suicide for mentally competent, terminally ill adults.
No one "ignores" what "happens to the young." It is the subject of intense work and thought. For babies, the protocols on proxy decisionmaking apply. That is, not euthanasia, but refusal or withdrawal of treatment, plus whatever medical care can ease, reduce, or eliminate suffering, as so many medical posters here have described.
Older children present a very difficult dilemma. Should the law acquiesce when they seek to refuse or withdraw life-sustaining treatment? Should that acquiescence obtain in all situations, or should the child's decision be weighed, and if so, how? Can we maintain patient autonomy, while recognizing that even articulate children may be immature and change their minds?
It is true that a handful of states now permit some form of doctor-assisted drug-induced suicide for mentally competent, terminally ill adults.
No one "ignores" what "happens to the young." It is the subject of intense work and thought. For babies, the protocols on proxy decisionmaking apply. That is, not euthanasia, but refusal or withdrawal of treatment, plus whatever medical care can ease, reduce, or eliminate suffering, as so many medical posters here have described.
Older children present a very difficult dilemma. Should the law acquiesce when they seek to refuse or withdraw life-sustaining treatment? Should that acquiescence obtain in all situations, or should the child's decision be weighed, and if so, how? Can we maintain patient autonomy, while recognizing that even articulate children may be immature and change their minds?
This is one of the most courageous and honest things I have ever read.
20
Weeping for Sam, your wife, you and all of your family and friends.
Thank you for your courage in putting these words to paper for all to see.
I don't know that peace, much less acceptance ever will come after this many years ... maybe it is too early still, and 'accommodation' and living with it, alongside of you always, but not always like a brick wall at the very forefront ... is the 'best' than can occur, for now, maybe for many years, maybe until tomorrow.
Grief doesn't take a linear path, that's all we can know for certain.
I send you my best, whatever that looks like and feels like for you ... today, in this moment.
~ 9/11 family member
Thank you for your courage in putting these words to paper for all to see.
I don't know that peace, much less acceptance ever will come after this many years ... maybe it is too early still, and 'accommodation' and living with it, alongside of you always, but not always like a brick wall at the very forefront ... is the 'best' than can occur, for now, maybe for many years, maybe until tomorrow.
Grief doesn't take a linear path, that's all we can know for certain.
I send you my best, whatever that looks like and feels like for you ... today, in this moment.
~ 9/11 family member
11
These terrible experiences fade out of memory if parents subsequently have healthy children with hopeful futures.
2
Tragic, sad and beautiful recounting. Incredibly difficult situation and decision that YOU made. I dread that some group of politicians far from the scene might have made generic rules dictating the decision.
7
Actually, some "group of politicians" did make "generic rules" on this. At a time when doctors nearly unanimously opposed a patient's right to autonomy, lawyers and judges, and then politicians, forged a legal path for refusal and withdrawal of treatment. For everyone here (including me) who thinks Sam's father did the right thing, you should know that it's thanks to crusading litigants and lawmakers that Sam's parents had the ability to do what they thought Sam would have wanted, if he could communicate.
And, that, not "what's in his best interest" is the legal standard. Sometimes, most times, they are the same. But the wording matters. And, it can even ease the wrenching, terrible "choice"--is this what Sam would want, if he had to choose, and if he was able to choose? Not, who are we to make that choice as to what is best for him?
And, that, not "what's in his best interest" is the legal standard. Sometimes, most times, they are the same. But the wording matters. And, it can even ease the wrenching, terrible "choice"--is this what Sam would want, if he had to choose, and if he was able to choose? Not, who are we to make that choice as to what is best for him?
1
My heart aches for you and your wife. And for everyone who has been left with such a devastating choice. Its time for a better, more humane option to be available.
6
It is available, read the doctors' comments here.
Thank you for sharing your story. It wasn't easy to read, and I'm sure it wasn't easy to write.
9
I am so sorry for the loss of your son and your family's heartbreak. About seven years ago our family agreed to remove my sister's life support and let her go "in peace". The nurse assured us my sister's lungs were so compromised she would last less than five minutes. For 49 minutes I stroked my sister's hair and talked to her as she went through a death exactly like the one you describe your little son enduring. It was shocking to see how much she struggled and how long she lingered. Three years later, I held the head of my wonderful old German Shepherd as the vet administered a shot and my girl died immediately, without a moment of struggle. I agree with you - why can we not offer the same choice to families who are letting terminal loved ones go? It could be a choice each family makes, but I believe the choice should be there.
40
Because human beings are not dogs.
You treated your old dog with kindness and love, but many millions of dogs are euthanized each year because nobody wants them. We treat them like disposable garbage.
You have the power of life or death over your pets -- even if they are young and healthy. You can put them down for any reason, or NO reason at all -- you are bored, you are moving, you are tired of having to clean kitty litter or walk the dog, etc.
We don't do this to human beings. Sorry for the inconvenience.
I am very sorry about your sister; it is impossible to know exactly how long any one patient will linger. My 93 year old aunt lingered six days after her life support was shut off. However, she got morphine. I am not sure why your sister did not get morphine.
You treated your old dog with kindness and love, but many millions of dogs are euthanized each year because nobody wants them. We treat them like disposable garbage.
You have the power of life or death over your pets -- even if they are young and healthy. You can put them down for any reason, or NO reason at all -- you are bored, you are moving, you are tired of having to clean kitty litter or walk the dog, etc.
We don't do this to human beings. Sorry for the inconvenience.
I am very sorry about your sister; it is impossible to know exactly how long any one patient will linger. My 93 year old aunt lingered six days after her life support was shut off. However, she got morphine. I am not sure why your sister did not get morphine.
I would have never taken out the breathing tube. If my child would have lived, I would have devoted my life to his care. If my child would have died, breathing tube in place, nutrition given, it would not have been the suffocating horror this father caused and then had to witness. I wouldn't have survived it. Parents cannot be limited to choices like this. There has to be another way. We have to find our humanity.
5
You don't know what you would do until faced with it.
4
Death is an inevitable part of our humanity. Some children die and medical science can't save them. As much as you'd like to wish it otherwise there really isn't "another choice" in these situations, only about when and where and how long to draw out the suffering.
If Mr. Comstock's wife refused amniocentesis because she would never have aborted a defective fetus, what are the chances that she would have permitted a post-natal euthanasia? Not likely. The brutality of this child's death was occasioned by her fixed ideas about abortion.
Mr. Comstock's argument that a humane alternative to letting his son die should have been available ignores the fact that such an alternative was always available. The morally right decision was to abort the fetus. Instead they refused amniocentesis thus avoiding having to make any decision at all. They played dice with their newborn but called it an exercise of faith-based values.
This column underscores the brutality of the so-called "pro-life" movement. It demands the suspension of the ordinary faculty of human reason and do nothing to avoid the suffering of newborns with devestating genetic abnormalities or the grotesquerie of brain-dead Terry Schiavos kept alive on ventilators and feeding tubes awaiting "natural death."
Mr. Comstock's argument that a humane alternative to letting his son die should have been available ignores the fact that such an alternative was always available. The morally right decision was to abort the fetus. Instead they refused amniocentesis thus avoiding having to make any decision at all. They played dice with their newborn but called it an exercise of faith-based values.
This column underscores the brutality of the so-called "pro-life" movement. It demands the suspension of the ordinary faculty of human reason and do nothing to avoid the suffering of newborns with devestating genetic abnormalities or the grotesquerie of brain-dead Terry Schiavos kept alive on ventilators and feeding tubes awaiting "natural death."
46
Intellectually, I understand and agree with your position. As a mother of a T-18 baby that died, I empathize with whatever narrative that mother brings into the doctor's office. Waxing poetic about what you would do is simply a philosophical exercise. I hope you will never experience this, the most excruciating of life decisions.
5
I have always hoped that if I were facing a painful end that someone would step in to end my agony. I watched such a thing happen to my brother and although I wished I could have helped , i didn't act. To have done so would have been deemed murder.
The only solution to this dilemma may be for me to do-myself-in if I am in my right senses.
The only solution to this dilemma may be for me to do-myself-in if I am in my right senses.
9
This was a very brave piece to write.
6
One way or another I have learned that it is impossible to compare one person's pain with another's pain. We each suffer in one's own way.
Some 55 years later I still miss my daughter, who lived with us for six months and underwent six surgeries. In the meantime, I had to furnish emotional support to an extended family, as well as to my wife.
I do not not understand why Sam was saddled with the support of a family, a congregation, and a pastor, when what he needed was his wife and his physician to help him and his wife to make the horrible decisions they had to make. In situations like the one described, quite often less is more.
Some 55 years later I still miss my daughter, who lived with us for six months and underwent six surgeries. In the meantime, I had to furnish emotional support to an extended family, as well as to my wife.
I do not not understand why Sam was saddled with the support of a family, a congregation, and a pastor, when what he needed was his wife and his physician to help him and his wife to make the horrible decisions they had to make. In situations like the one described, quite often less is more.
6
Thank you for sharing this awe-inducing story. It is gloriously human and profoundly moving. I can't imagine a harder decision and more painful experience. Thank you.
6
Thank you for saying out loud what many have thought. Helping ease or speed someone's way through dying when they are dying is not a sin, and and should not be a crime.
175
Mr. Comstock, there is a time to pray for healing, and there is a time to pray that suffering will end. You helped to end your son's suffering. The trisomy 18 is what ultimately took his life.
And it makes perfect sense to talk about his life. In his short life, he knew love, he gazed into his parents loving eyes, and was held in loving and caring arms. All babies should know these things, yet some never do. I know it has been a few years since, but I hope you have found, or soon will find, the peace that allows you to do what your son--if his infant mind could reason--probably did on his last day on earth: forgive yourself.
And it makes perfect sense to talk about his life. In his short life, he knew love, he gazed into his parents loving eyes, and was held in loving and caring arms. All babies should know these things, yet some never do. I know it has been a few years since, but I hope you have found, or soon will find, the peace that allows you to do what your son--if his infant mind could reason--probably did on his last day on earth: forgive yourself.
87
My son died in much the same way. Although he had a different birth defect, renal agenesis, which was not treatable back in the early 2000's when he was born. Thankfully, we knew ahead of time from the ultrasound, so we had time to prepare, and decide not to allow any breathing tubes to begin with.
I don't believe that he was in pain at all. In fact, he died so quickly and silently that my wife didn't even notice his passing as she talked with a visiting friend in the hospital room while I napped on a rollout bed. It felt like his spirit was in the room with us for a bit, and then gone.
He would have been 14 this year. My wife and I have other children now, but every now and then I'm counting them and then it seems like one of them is missing. Because one is.
I can't opine on what this writer went through and what he has decided on as I've never been there. My son didn't suffer. He just fell asleep and didn't wake up.
I don't believe that he was in pain at all. In fact, he died so quickly and silently that my wife didn't even notice his passing as she talked with a visiting friend in the hospital room while I napped on a rollout bed. It felt like his spirit was in the room with us for a bit, and then gone.
He would have been 14 this year. My wife and I have other children now, but every now and then I'm counting them and then it seems like one of them is missing. Because one is.
I can't opine on what this writer went through and what he has decided on as I've never been there. My son didn't suffer. He just fell asleep and didn't wake up.
19
The author and his wife handled an impossible situation with humanity and compassion.
The author says his wife would never choose abortion, but doesn't say how he feels about it. I hope they both support a woman's right to choose. (It would be hypocritical if they didnt.) They made a heart-wrenching decision themselves, in consultation with family, friends and doctors. No government telling them what to do. No religion either, it seems.
Arguably it would be more "humane" to abort the fetus. But it's the parents' decision, which the wife's religion does not accept. (The author doesn't say what is the view of his wife's "theology" about letting the baby die by removing the breathing tube.) It's unclear if the couple even sought guidance from the clergy. That seems quite odd given the importance the mother places on theology.
The author says his wife would never choose abortion, but doesn't say how he feels about it. I hope they both support a woman's right to choose. (It would be hypocritical if they didnt.) They made a heart-wrenching decision themselves, in consultation with family, friends and doctors. No government telling them what to do. No religion either, it seems.
Arguably it would be more "humane" to abort the fetus. But it's the parents' decision, which the wife's religion does not accept. (The author doesn't say what is the view of his wife's "theology" about letting the baby die by removing the breathing tube.) It's unclear if the couple even sought guidance from the clergy. That seems quite odd given the importance the mother places on theology.
6
This is a sad tale carefully written to convey the maximum emotional impact on the parents. But the infant was suffering and dying every second with, let us be frank, no hope for survival whatsoever. Removing the respirator and letting the infant go was not only the kindest outcome but the necessary one in an ethical compassionate society.
6
My condolences on the death of Sam. Wondering if in retrospect the amneo would've been useful in terms of preparation - being at the best hospital, the emotional toll, etc. Abortion is not the only action when have the information.
5
A number of years ago, Perry Klass (physician, author, mother) published "Too Small to Survive?" about this ethical dillema. She thought the best thing to do was to give birth in a small rural hospital that had no access to such 'life-saving' options. [This may have been before 'LifeFlight'.]
6
Thank you for sharing this painful, haunting story. So sorry your family had to make such a terrible decision, and even sorrier that the medical industry could not do more to ease your baby's -- and your -- suffering.
I had an arthritic, elderly horse put down last year. The vet came to our place, gave her a large dose of anesthetic and barbiturates. She completely relaxed, her eyes closed, and her head was hanging down. She finally lay down. Breathing deeply and peacefully, ever more slowly, with the vet and myself both petting her, she finally died. It was the most painless and peaceful death I have ever witnessed. If we can do it for horses and dogs, we should be able to do it for babies.
I had an arthritic, elderly horse put down last year. The vet came to our place, gave her a large dose of anesthetic and barbiturates. She completely relaxed, her eyes closed, and her head was hanging down. She finally lay down. Breathing deeply and peacefully, ever more slowly, with the vet and myself both petting her, she finally died. It was the most painless and peaceful death I have ever witnessed. If we can do it for horses and dogs, we should be able to do it for babies.
22
This is perhaps the most bravely-written essay I have ever read in my entire life.
20
Why would a baby not have morphine to prevent pain and anxiety as his tube was removed? I have had three relatives die from oxygen being withdrawn and all received fentynal or morphine first.
26
Thank you for your moving story of your heartbreaking decision. Please speak to Charlie Gard's parents and convince them that lingering with no life is worse than death. What doesn't make sense is that we are more humane to our pets than we are to humans who need to leave this life because they are suffering so much.
13
The author never says this actually happened.
And it's unlikely any medical professional would fail to administer medication to prevent the baby from gasping for air.
Finally, it seems inconsistent that a mother opposed to abortion would then take her child off of a ventilator.
If these events are actual and not hypothetical, loving parents cannot make the wrong decision in the midst of such extreme circumstances.
If, however, these events are hypothetical, I don't see the point of this piece.
And it's unlikely any medical professional would fail to administer medication to prevent the baby from gasping for air.
Finally, it seems inconsistent that a mother opposed to abortion would then take her child off of a ventilator.
If these events are actual and not hypothetical, loving parents cannot make the wrong decision in the midst of such extreme circumstances.
If, however, these events are hypothetical, I don't see the point of this piece.
4
Taking any person 'off a ventilator' can be an act of kindness. There is nothing great about keeping a baby alive who cannot oxygenate his own body.
11
It's my belief that those who oppose letting/helping a person die have never seen the end of days struggles our loved ones have been forced to endure. I cannot imagine anyone would wish that struggle on another human being.
13
It's a tragic situation, but for cases as extreme as Sam's, I think the only merciful option is to let the baby die at birth. Every day of being hooked up to a ventilator in an ICU is just another day of pointless misery, for these conditions which have no cure and leave no possibility of a happy existence.
All birth defects are not like this, naturally it is not too hard to have a long and enjoyable life with Down's syndrome or a variety of other problems. But being forced into a short life of being bedridden and hooked up to machines is not a humane option.
So I think Sam, and all those unfortunate enough to be born in his condition, should have been allowed to pass away immediately, so that he could give life another shot. Striving to keep such a pointless life going is only done out of selfishness and egotism.
All birth defects are not like this, naturally it is not too hard to have a long and enjoyable life with Down's syndrome or a variety of other problems. But being forced into a short life of being bedridden and hooked up to machines is not a humane option.
So I think Sam, and all those unfortunate enough to be born in his condition, should have been allowed to pass away immediately, so that he could give life another shot. Striving to keep such a pointless life going is only done out of selfishness and egotism.
9
You brave, brave, brave and loving person. Thank you.
12
"You Should Not Have Let Your Baby Die"
yes "you" should have but in the presence of medical professionals and not "you" or any family members. there was a minuscule chance of self-breathing etc. but finding out shouldn't have been witnessed except by medical personnel. euthanasia provides no chance of life so that part of this particular decision was correct.
yes "you" should have but in the presence of medical professionals and not "you" or any family members. there was a minuscule chance of self-breathing etc. but finding out shouldn't have been witnessed except by medical personnel. euthanasia provides no chance of life so that part of this particular decision was correct.
1
I had to watch my husband die nine years ago. Once his condition began to rapidly deteriorate, he asked me to make the decisions for us. His cancer was untreatable, and even the most aggressive treatment would not extend his life. It would just prolong his death. The decision I ultimately made was for him to suffer as little pain as possible. Though I feel I made the correct decision, I must live with the consequences of my actions. It's hard. I must also confess that I do not see the line with abortion. I do not consider abortion murder, any more than I consider allowing disease take its natural course murder. This is true for a child so profoundly damaged that birth is incompatible with life, or a child whose birth is unwanted.
17
"Knowing ahead of time (amniocentesis) that the child was genetically abnormal would not have provided any useful information."
Perhaps that information about abnomality would havbe proved useful at the time of accepting or not "the attending physician’s advice to Life Flight him immediately in a helicopter to the Infant Intensive Care Unit at the Iowa City Hospitals."
"There seems to you both a difference between killing your baby and letting him die."
I cannot quote directly, but I have read that few deaths, at any age, are peaceful.
"But supposing that he had thoughts, his strongest thought during those last minutes certainly appeared to be: 'This hurts. Can’t someone help it stop?'"
There seems to be confusion: Either the infant had strong thoughts and ought not be killed. Or he did not, and his suffering is resolved in the arms of God.
No doubt this family, and so many others, are put in the predicament of making choices that are dreadful.
Perhaps that information about abnomality would havbe proved useful at the time of accepting or not "the attending physician’s advice to Life Flight him immediately in a helicopter to the Infant Intensive Care Unit at the Iowa City Hospitals."
"There seems to you both a difference between killing your baby and letting him die."
I cannot quote directly, but I have read that few deaths, at any age, are peaceful.
"But supposing that he had thoughts, his strongest thought during those last minutes certainly appeared to be: 'This hurts. Can’t someone help it stop?'"
There seems to be confusion: Either the infant had strong thoughts and ought not be killed. Or he did not, and his suffering is resolved in the arms of God.
No doubt this family, and so many others, are put in the predicament of making choices that are dreadful.
1
It is indeed sad that we torture the terminally ill, of every age, in the name of god, or our selfish perceptions of life. Life is cheap. When the genetic lottery is kind to us, the species progresses. That's how we got where we are. But it doesn't always work in our favor. And when such things happen, rather than embrace the knowledge that our "God given" minds have been able to achieve in mitigating the death struggle, so many people selfishly condemn people they claim to love to torturous end, hiding their selfishness, or cowardice behind rationalization or religion.
I am happy for the parent that after so much time they have finally come to realize their mistake. We must learn to take life as it comes, not to prolong a life made meaningless by disease or genetic disorder. That includes cancers as well.
I am happy for the parent that after so much time they have finally come to realize their mistake. We must learn to take life as it comes, not to prolong a life made meaningless by disease or genetic disorder. That includes cancers as well.
8
Reading your story is heart wrenching, and my deepest sympathies go out to you. I couldn't help wondering though, since you are have remorse now about not having a third option to end the babies life peacefully, if you have second guessed your decision not to have amniocentesis? I doubt your wife has, but wouldn't knowing ahead of time that the baby would have no chance and terminating the pregnancy then have amounted to the same thing? By saying that there are in fact times when ending a life is a humane act, isn't an abortion the same thing?
8
When the decision was made by our family to take my mother off life support, after a devastating stroke, I murmered something like, "I wish she understood that this is what we're doing." My father said, "No, that's why she has ME." He was familar with her decisions regarding end-of-life medical care, as she had carefully filled out a medical proxy years before. Shortly after my mother died in hospice, my husband and I made the decision to euthanize our seven year-old dog, as his medical conditions were making life miserable for him. Every emotion about my mother's death got triggered. I was in tremendous emotional distress. But, I kept going back to my father's words, telling myself, "That's why this dog has ME." As the person who has the capacity to make life or death decisions for another, a primary reason for choosing to end another's life has to be protective. Mr. Comstock, you protected your son and saved him more pain and misery. It was noble. It was fatherly. It was your responsibility. I know you cannot help but return to it in your mind, as it was probably the most important decision you will make in your life. Any reasonable, moral, ethical person would question their decision. I support you in what you did. Perhaps your son didn't suffer as you projected. I deeply hope he didn't. I wish I had the right words for you, to take away your pain. Life is difficult. I wish you peace. I think you have helped a great many people with your words.
14
In this tragic, tragic case, what is the difference between abortion and euthanizing the baby after birth? In both cases, you would have avoided causing pain--one before delivery, one after. But the outcome would still be the same. The author doesn't say how his wife feels now but if nothing else, their joint decision honored her feelings and their religious beliefs and perhaps in this situation that's enough. I hope the family has found peace.
9
I'm sorry to say this, and do so only because you have chosen to tell this story in a column about philosophical and moral questions and so must be willing to entertain discussion on this point, but, if your family had made the decision to abort the fetus based on prenatal testing results, you could, in fact, have spared him that suffering. (Of course, not your family's, for which you have my sympathy.)
I understand the instinctive, if not the intellectual, distinction in a moral analysis between aborting a fetus and letting a newborn die. Assuming equivalent knowledge about potential outcomes for the fetus/baby at each stage, though, I can see no moral distinction between aborting a fetus and the solution advocated here, euthanasia of a newborn. If anything, abortion is more likely to spare the fetus/baby pain.
I understand the instinctive, if not the intellectual, distinction in a moral analysis between aborting a fetus and letting a newborn die. Assuming equivalent knowledge about potential outcomes for the fetus/baby at each stage, though, I can see no moral distinction between aborting a fetus and the solution advocated here, euthanasia of a newborn. If anything, abortion is more likely to spare the fetus/baby pain.
14
Mr. Comstock, what a powerful piece of writing. My heart aches for you, your wife, and your late son. What an agonizing experience to go through -- for all of you.
Sadly, I must agree with your conclusion: it would have been a blessing to have been able to "put him to sleep", as the euphemism goes for animals.
Sadly, I must agree with your conclusion: it would have been a blessing to have been able to "put him to sleep", as the euphemism goes for animals.
7
A family relation had the same thing happen some years ago. The baby could breathe, but not eat or drink. She lived for about a week before succumbing. It might have been devastating for the family, but they pulled together, relying on their faith, which I do not share, that told them that they would all be reunited after death.
I'm glad they found a way to rationalize what happened. Nevertheless, I'm trying to understand how this was preferable to aborting a fetus at a few months (or weeks?) old, and how anyone can accept a religion that prefers it this way.
I'm glad they found a way to rationalize what happened. Nevertheless, I'm trying to understand how this was preferable to aborting a fetus at a few months (or weeks?) old, and how anyone can accept a religion that prefers it this way.
85
Because with life there is always possibilities. I'm extremely glad that my wife and I chose not to abort our son (not that my wife would have ever made that choice in a million years), as otherwise we would not have had the privilege of holding him and loving him for the brief 8 hours he lived.
Seeing him born gave him dignity and humanity. There is no dignity for the fetus in abortion.
Seeing him born gave him dignity and humanity. There is no dignity for the fetus in abortion.
2
Dignity? Humanity? Would an ailing and dying baby truly care about these things over the immense pain they are feeling during their slow death?
1
Will,
This is a lovely response and I admire your wife's and your courage. I agree with your sentiments.
This is a lovely response and I admire your wife's and your courage. I agree with your sentiments.
I had a somewhat similar experience many years ago. It remains the most profoundly difficult decision I have ever made, though I no longer wish it had never happened. I hope that the author and his wife take comfort that they were able to meet and name their son, Sam. The fact that so many family members gathered to meet and say goodbye to him also means that he will remain in their memories as a part of the family.
14
I have had pets for years. I have been with each of the ones who have died--always at the gentle, compassionate hands of their trusted veterinarian--during the euthanasia process. Each time, I have had the same thought: Why is this peaceful, painless process not available to people? Now, thankfully, it is in some states--under restricted conditions. If newly minted Justice Gorsuch had his way, however, it would never be available. I find that an unspeakably cruel position to take.
119
Mainly because the state allows you to kill as many animals as you like for whatever reason you like (I once had an acquaintance tell me that she had her cat put down because it was spreading fleas all over her house) , but I don't really think we want to go that route with people.
"Genetic testing is done to allow parents the choice to abort fetuses with severe problems. But your wife would never abort her baby, so there was no point in having the tests performed."
This is inaccurate. I perform prenatal diagnostic procedures, and each one is done to provide parents with information. Some parents use this information to choose abortion, and some choose to continue the pregnancy.
When Trisomy 18 is diagnosed, specialists in obstetrics, genetics, and neonatal medicine counsel families about likely outcomes. Options such as avoiding aggressive obstetric care (like performing emergency C-sections) and neonatal care (like intubation) that don't improve the prognosis but can be risky for the mother and prolong suffering for the newborn are discussed.
In this tragic case, prenatal diagnosis could have led to a better and safer experience for the entire family.
This is inaccurate. I perform prenatal diagnostic procedures, and each one is done to provide parents with information. Some parents use this information to choose abortion, and some choose to continue the pregnancy.
When Trisomy 18 is diagnosed, specialists in obstetrics, genetics, and neonatal medicine counsel families about likely outcomes. Options such as avoiding aggressive obstetric care (like performing emergency C-sections) and neonatal care (like intubation) that don't improve the prognosis but can be risky for the mother and prolong suffering for the newborn are discussed.
In this tragic case, prenatal diagnosis could have led to a better and safer experience for the entire family.
98
I think it is perfectly reasonable to opt for prenatal diagnosis for information purposes, but amniocentesis carries a risk that the pregnancy will be lost. It is a small risk but if you know that you would not terminate the pregnancy based on the information, then it is also reasonable not to opt to take on that risk. Another commenter described it as 1%, but that means for every 100 tests a baby is lost -- that's not a meaningless risk, especially if it wasn't easy for the mother to become pregnant.
You didn't let your baby die. He was going to die. You held him and comforted him and you were there for him in a way that only a good parent could be. You did what you could. It would give the most stalwart soul many many sleepless nights but it's not because you did anything wrong. Grief is about learning to accept that you don't have control of everything and even if you had the chance to do everything differently, which none of us do, the outcome would still be the same. Peace to you.
120
"He was going to die." Precisely. The question was never one of life or death, it was excruciating death or peaceful death. Was it better to pull the tube and have the child suffocate? Or would it have been better to give him a massive dose of morphine and die without pain? The father only had the option of the former.
5
On the one hand, we're constrained by our limitations in medical advancement in order to save this child by curing the problem. On the other hand, we have the technology to end life relatively painlessly and quickly. it seems we should accept that this may always be our Sophie's choice in treating people so, while extremely painful to make, it's purely a personal choice left to each circumstance.
15
I faced a similar dilemma when my mother was dying, semi conscious and ravaged with cancer pain. There was one of those metered morphine dispensers, and it wasnt easing her suffering. I wanted to smash it and fully depress the plunger, giving her a days worth of doses. I felt like a coward that I could not act.
Thank you for sharing your heartbreaking tale. Not so long ago parents lost newborns (and mothers) for all sorts of preventable reasons. Now we have so many tools to prevent suffering. But not for the very last choice.
Thank you for sharing your heartbreaking tale. Not so long ago parents lost newborns (and mothers) for all sorts of preventable reasons. Now we have so many tools to prevent suffering. But not for the very last choice.
50
My mother died at home while under the care of hospice doctors and nurses. (She had been under hospice care at home for more than two years.) As her life ebbed away, her vital signs became almost undetectable and she could no longer swallow--but she was conscious, and very, very afraid. (She had long before instructed me in writing that she wanted no artificial means whatsoever to keep her alive.) Seeing her terror broke my heart. We gave her sufficient doses of morphine to enable her to sleep. She slept peacefully for several days, no longer in any physical or mental pain, and then her life quietly ended; she simply stopped breathing. I will always be grateful to the hospice program and the people who made that possible.
69
Almost 40 years ago I gave birth to a beautiful baby boy weighing over 8 lb, a much-wanted son, seemingly perfect - except his color was a bit "off" at birth. This seemed okay in a couple of hours, but 4 days later he began to gasp for breath and developed blue areas on his body. Rushed to a NICU, on oxygen, he was quickly diagnosed with left heart hypoplastic syndrome, a fatal defect. At that time there were no choices to be made...he would die. No surgery known then was available nor a heart transplant, not even thought of at that time. We asked what would happen and were gently told he would be disconnected from all support, which he was, and we held him, wrapped in a baby blanket, until he very quietly ceased to live. Ironically, I had amniocentesis because of my age, and a sonogram, but he was genetically fine. The sonogram, which done today would have shown the heart problem...a complete lack of left heart and aorta... was at that time not technically advanced enough to show it. So he died and we had no choices to make, which I think of as lucky. If we had to make choices, what would we have done? Put him through many surgeries and pain in hopes he could live a while longer? Would that be for his benefit or ours? What would his life be, for however long it lasted? The choice for life in whatever form it may take is not necessarily the kind and loving choice.
176
Jean, I am sorry for your terrible, unimaginable loss. Please accept my sincere condolences.
Thank you, Mr. Comstock, for this incredibly important story, which had to be wrenching to write. You conveyed the issues and the infinite, life-changing sadness as no one else could have done. We now have the opportunity to learn from you and your family.
For those who think it was cruel to bring Sam to term, please re-read the fourth paragraph. The manifestations of this genetic problem are highly variable. The simplicity of presenting choices as black or white comforts some, but if we are honest with ourselves, we see that simple choices are rarely relevant in real-life tragedies.
As a nurse, I agree: Euthanasia (along with palliative care) in such exquisitely painful circumstances should be a carefully-considered option. Every decision in life does not lead to a slippery slope.
For those who think it was cruel to bring Sam to term, please re-read the fourth paragraph. The manifestations of this genetic problem are highly variable. The simplicity of presenting choices as black or white comforts some, but if we are honest with ourselves, we see that simple choices are rarely relevant in real-life tragedies.
As a nurse, I agree: Euthanasia (along with palliative care) in such exquisitely painful circumstances should be a carefully-considered option. Every decision in life does not lead to a slippery slope.
85
Having buried a son, I can certainly relate to the thoughts of another father. I also know that in the moment, it is nearly impossible to think straight. As humans we are conditioned to value life. When those doctors broke the news to the family, it's like being hit with a ton of bricks. Your world does a 180 in the blink of an eye, all of the hopes and dreams and happiness you had are gone. People will say things, some are dumb, some will upset you, there is little that can be said that won't get under your skin. Doctor's can only help so much, clergy can help so much but ultimately the decision to provide or not provide care belongs to only two people and it's devastating. We all do what we think is right and then regret our decisions in moments of solitude for years to come. There is no right, and in the moment you aren't able to even consider what the author proposes. I don't necessarily disagree with him but it's a pretty tough road to go when you are already not thinking straight. All you can do is the best you can and regret that it wasn't enough.
53
As a nurse I have observed and, at times, held dying newborns. It is never easy. It never should be.
What helped me assimilate the senselessness of this was when I walked in an old cemetery, the kind you only find on the East coast, the kind with mossy headstones with blurry, faded inscriptions, and saw how many tiny tombstones there were, almost invisible amongst those more grandiose commemorating longer lives. Some of these tiny stones are blank. some have inscriptions showing one day, three days, two weeks between life and death. Some had the mother's day of death the same as that of the baby. some have names. the blank ones tell as much story as those with flowery inscriptions. the blank stones, merely marking a place in the soil that hadn't merited a place in the register of life still seemed to cry out "here was a life." Back then when NICU care and the decisions that those possibilities require, acceptance of death was easier. you can see the sorrow, even on those tiny blank stones. I suppose the only difference is then there was not so much guilt over the acceptance of the inevitable. Sorrow, yes. Guilt, not so much. I wish we health professionals did a better job of assimilating death as a natural aspect of humanity.
What helped me assimilate the senselessness of this was when I walked in an old cemetery, the kind you only find on the East coast, the kind with mossy headstones with blurry, faded inscriptions, and saw how many tiny tombstones there were, almost invisible amongst those more grandiose commemorating longer lives. Some of these tiny stones are blank. some have inscriptions showing one day, three days, two weeks between life and death. Some had the mother's day of death the same as that of the baby. some have names. the blank ones tell as much story as those with flowery inscriptions. the blank stones, merely marking a place in the soil that hadn't merited a place in the register of life still seemed to cry out "here was a life." Back then when NICU care and the decisions that those possibilities require, acceptance of death was easier. you can see the sorrow, even on those tiny blank stones. I suppose the only difference is then there was not so much guilt over the acceptance of the inevitable. Sorrow, yes. Guilt, not so much. I wish we health professionals did a better job of assimilating death as a natural aspect of humanity.
146
You remind me of a cemetery I sometimes visit in Maine. In one corner there is a grand headstone with obelisk commemorating a couple who lived well into old age. Around the base of the monument are the names and dates of some ten children, none of whom survived to adulthood.
31
I see your point, but I don't get the impression that the author's problem was just accepting his son's death. It was an objection to the manner of that death and the way his child suffered--needlessly--during that death. We can ease that suffering, but we don't. We'll do it for animals, but not people. Why is that?
3
In a cemetery near Brewster, NY, there is a large Victorian obelisk for a family's resting place. The father and mother's names are inscribed with their exact birth dates, not just the year. Then there was the name of a baby who lived three days. Under that was "Infant," who according to the dates lived several months. How traumatized by their first child's death this couple must have been to be unable to even name their second child!
In my own family, my father's mother gave birth to 14 children, but only 8 lived to adulthood. She lost two in one week to a flu epidemic.
In my own family, my father's mother gave birth to 14 children, but only 8 lived to adulthood. She lost two in one week to a flu epidemic.
4
This should be the Analogy for medicine in America. Medical is to Merciful as Death is to Peace. Alas in this young country the living making decisions for those without a voice and cling to the only thing we at the end don't have anymore of...time.
12
Genetic testing is not only for allowing people to abort. It is also to let people know, so they can prepare. Your family had the worst surprise ever- I think it would have been less bad to know, to prepare, ahead of time.
51
I also thought of genetic testing as an opportunity for families to prepare for the birth of a child who would be born with an anomaly. Time to educate themselves about their child's condition
22
I always imagined that I would die peacefully in my sleep. That for me has always been ideal rather than suffering until the final last second. I can't imagine putting my own child through the very suffering that I would naturally want to avoid for myself.
12
My son died when he was three following open heart surgery. He had Down's syndrome. Like your wife, I would never have opted for any genetic testing. My baby was my baby, no matter what.
It was indescribably painful to watch what was happening to him during the three weeks following his surgery. Although it was 35 years ago, the pain and loss are always there.
I cannot imagine what it would have been like if my son had experienced the same torturous death your child had to go through. I agree with you. This is not a religious question, it is a matter of doing no harm, of providing what is best for our children. In his own way, your child was begging for your help, and you were not given the option to do anything. The medical community has the ability--the moral responsibility--to respond humanely. It failed you.
It's easy for people who have not had to experience this most terrible of losses to pass judgment on a situation like this. I would never wish the loss of one's child on anyone.
It was indescribably painful to watch what was happening to him during the three weeks following his surgery. Although it was 35 years ago, the pain and loss are always there.
I cannot imagine what it would have been like if my son had experienced the same torturous death your child had to go through. I agree with you. This is not a religious question, it is a matter of doing no harm, of providing what is best for our children. In his own way, your child was begging for your help, and you were not given the option to do anything. The medical community has the ability--the moral responsibility--to respond humanely. It failed you.
It's easy for people who have not had to experience this most terrible of losses to pass judgment on a situation like this. I would never wish the loss of one's child on anyone.
57
I don't think this baby's death was "tortuous" nor did the medical community respond inhumanely. I had a baby boy die in less than a week because he was born without the left side of his heart. Would we have opted to put him through many surgeries in hopes of prolonging his life if we had that choice? We had no options at the time and thus did not have to decide....which was a blessing.
2
Did the medical community fail him? Or did our society? I'm a trauma and critical care surgeon so I deal with end-of-life care all the time. I can tell you right now that if I deliberately give a suffering human patient a lethal dose of a narcotic or benzo, even in the context of knowing they'll die in the next minutes to hours regardless of what I do, I'll end up on trial for murder. There is a case in the judicial system right now started by a coroner's investigator in LA who reported a child's physician for murder because the doctor administered a larger-than-normal dose of narcotic to a child whose parents had chosen to withdraw life-sustaining treatment, which included removing a breathing tube. The doctor presumably tried to relieve the child's suffering after the breathing tube came out, and now she's been accused of murder. We absolutely have the ability to respond humanely when appropriate, but we're certainly not going to do it if American society then deems us murderers for doing so.
13
A fatal dose of morphine wouldn't be needed. How about enough so there was no pain and no fear while his broken body died? Yes, hold him for that time, but prevent torture. It will still be difficult, but maybe less so.
93
This reminds me of a relative who found out through ultrasound that her unborn son was anencephalic - meaning he had no brain, and the entire top of his skull was missing. But because she believed in "life", she insisted on giving birth to this baby figuring that a "medical miracle" might possibly happen. Practically her whole church came to the hospital and prayed over it, but I the fetus never miraculously grew a brain and fortunately died right after birth.
I just don't get the whole thing about wanting to birth a certain to die baby versus abortion.
I just don't get the whole thing about wanting to birth a certain to die baby versus abortion.
113
I read a "confession" by a mother who had a late term abortion. Her carefully planned, desperately wanted child had no lungs. Because of how long it took to discover the problem, and of course the time they needed to decide what to do, this necessitated a third-trimester abortion. There were only two doctors in the country who would do it, and it cost them a great deal of money, but she and her husband decided that it was better that the child die peacefully in the warmth and comfort of her womb than be born and left to suffocate slowly. It was the most moving, most thought-provoking thing I have ever read. I am crying again just thinking about it. It makes my heart break for the women in her situation who don't have the resources to choose, and who will be forced by circumstances beyond their control to carry their child to term only to watch it die an agonizing death. Sometimes choice is about mercy, not murder.
8
Sometimes a way to find peace and meaning when an anencephalic child is born is to donate the child's organs for transplantation. I don't know what the medical criteria are (for example would a heart from a baby with Trisomy 18 be usable?) but when that is an option it can be a way for the family to find solace and feel like something of their child lives on.
2
My brother had profound genetic abnormalities--both trisomny (not 18) and other chromosomal abnormalities. He lived with the help of a surgery at 3 months to correct a hernia. It was not a good life--for him or my parents. He was violently self-abusive, and we ultimately had to institutionalize him because my mother was physically and emotionally exhausted by his care. She loved Phillip as much as these parents loved Sam. By the time we institutionalized him, my father said it was either do that or wait two years and institutionalize my mother.
I had amniocentesis with my older daughter and chorionic villi (sp?) sampling at 8 weeks with my younger daughter. I had spoken with a genetic counseler, whose conclusion was that I had no more risk than anyone in the general population of having a child with Phillip's issues. I wanted certainty.
I hope people understand that this intensely personal decision can and should be made by the parents who will care for the child, and that Sam's mother--who made her own choice--would not vote for policies that would deny other parents the same privilege, responsibility and pain.
I had amniocentesis with my older daughter and chorionic villi (sp?) sampling at 8 weeks with my younger daughter. I had spoken with a genetic counseler, whose conclusion was that I had no more risk than anyone in the general population of having a child with Phillip's issues. I wanted certainty.
I hope people understand that this intensely personal decision can and should be made by the parents who will care for the child, and that Sam's mother--who made her own choice--would not vote for policies that would deny other parents the same privilege, responsibility and pain.
84
I am sorry for your family's pain. I had a cousin whose son was born in the late 1950s and was profoundly developmentally delayed. He could not speak or walk or dress himself. His mother fed him, bathed him, dressed him until he was in his 20s. She was a tiny little woman and struggled both physically and emotionally caring for him. She was a Holocaust survivor who had lost almost her entire family and was desperate to care for him as best she could. Ultimately the family placed him in an institution that to their horror turned out to be Willowbrook. I am quite sure the guilt and physical demands of his care killed her prematurely. It was so tragic on every level. These are intensely painful and private decisions that families should be able to make for their loved ones.
I wish your family and Mr. Comstock's family peace.
I wish your family and Mr. Comstock's family peace.
3
Thanks for your kindness. Your cousin's story is heartbreaking. People greatly underestimate the physical toll the care of a profoundly handicapped child takes on the primary caregiver, who is usually the mother. My mother recovered from the exhaustion, but she never recovered from the guilt of institutionalizing my brother or the pain of seeing him in an institutional situation that was less than ideal, but the only possible life for him. Children and adults with my brother's level of disability--displaying either violence toward others or, as he did, violent self-abuse that often resulted in the injury of those trying to stop him from banging his head against a wall or throwing his body against it--aren't good candidates for group homes. My brother could walk, but he could not speak, feed himself and was not toilet trained--and the self-abusive episodes began in early childhood.
3
Since this is a philosophy column, the author is making an argument. This is a very sad, difficult, and hard situation, and of course above all one should feel compassion for parents faced with this challenge. But the argument here is chilling indeed. "You should have killed your baby" are words that should be unthinkable. Why? For exactly the reason depicted in many of these comments: who are we to judge whether someone's reasons for killing their baby are sufficient or not? I was born with an unexpected and permanent physical disability. Perhaps my parents might have thought, "We should kill our (misshapen) baby." Or maybe a young single mother has a child and is completely overwhelmed by her life and think, "I should kill my baby." Who are we to judge? We are not in such a position. That's why it should never, ever be considered. This does not mean every possible treatment needs to be considered, there are standards of care, etc. But the philosophical point the essay is making is that "you should have killed your baby." And that is truly horrendous. Those who are unable to tell the different between this and "you should have killed your dog" display their inability to understand the profound difference between a person and a dog.
12
In this case the "you" is the author himself. It's not directed at the outside world, at least the way it's written. But it can certainly be interpreted as though he's trying to make the case that others should, too.
10
I believe you are missing a critical point, David, which is that the baby was dying of a fatal disease. It wasn't just an inconvenience, or something atypical but livable - this child was going to die as it was impossible for him to breathe on his own. The argument is not that humane physician-assisted death be an option to ALL parents, but an option to those whose infants will suffer as they inevitably pass away shortly after birth.
9
The author's choice was not between killing his son and letting his son live; it was between killing his son and letting his son die. Since you are still here and mentally/physically able to respond to his story, clearly you are offering a false equivalency with your own situation.
8
I would never blame you if you had decided to kill your baby. But you are wrong in how you look at his death.
You wish you had spared him his dying. In effect, you want to have spared him the little, agonizing life he had. Skipping his life as if he had never been. This may not be a worse alternative--but it is not a better alternative either.
If it is worth it to bring into the world a child who will not live, then it is worth it to give him the little life he has. It is tragic that his life consisted of dying in your arms. It would also be tragic if he had no life. By your means.
Make peace with your decision. It's more than time.
You wish you had spared him his dying. In effect, you want to have spared him the little, agonizing life he had. Skipping his life as if he had never been. This may not be a worse alternative--but it is not a better alternative either.
If it is worth it to bring into the world a child who will not live, then it is worth it to give him the little life he has. It is tragic that his life consisted of dying in your arms. It would also be tragic if he had no life. By your means.
Make peace with your decision. It's more than time.
21
What were those medical personnel thinking to have NOT given that baby drugs to have alleviated its pain?
In my opinion, that mother shouldn't have been sad, she should have been furious!
I never realized that parts of our country were so backward!
In my opinion, that mother shouldn't have been sad, she should have been furious!
I never realized that parts of our country were so backward!
37
I've been at a couple of bedsides waiting for death after life support was removed and seen the slow increase in morphine administered to alleviate pain - my thought has been that I would like to have the morphine at max before the removal, especially of ventilation, so I don't sense suffocation. I would like to go gentle into that good night.
47
I agree it was strange that no pharmaceutical comfort was mentioned in the article. . . unless the parents were against it.
4
Oh, god. Thank you.
14
utterly heartbreaking. I'm so sorry you had to go through this.
20
My wife recently passed at age 46 after a five year battle with breast cancer. It was a rough fight and her last real day of consciousness was not a good one. At least she was able to be put onto a morphine drip to make her last hours as comfortable as possible -- at least I hope she was. She went peacefully in her sleep.
We thought we had more time and that she would be on hospice care for the summer, giving her a somewhat peaceful end, but that was not meant to be. Still I am pretty sure she wouldn't have been gasping for air in her final moments.
We thought we had more time and that she would be on hospice care for the summer, giving her a somewhat peaceful end, but that was not meant to be. Still I am pretty sure she wouldn't have been gasping for air in her final moments.
18
We all just do the very best we can.
26
I offer my deepest sympathies to you and your family.
We, too, have walked this path -- a waking nightmare if ever there was one. It is impossible to convey to others the agonies that parents in our situation have endured.
Our daughter also had Trisomy 18, but we learned of the diagnosis during my pregnancy and were able to make plans based on the various possible outcomes described to us by our outstanding medical team. We were fortunate to have the support and freedom to do what we thought best for our daughter.
We did not set up a nursery. We told our two young sons that they might not have a sister for very long.
In the end, our Bessie went to term and lived for three peaceful hours in our arms without any intervention. She took a breath every thirty seconds or so but did not cry or open her eyes. She did not exhibit any signs of distress at all -- and so we feel we gave her the chance to live the life she was given, however much we wanted a different outcome.
That was 12 years ago, and we miss her still.
We, too, have walked this path -- a waking nightmare if ever there was one. It is impossible to convey to others the agonies that parents in our situation have endured.
Our daughter also had Trisomy 18, but we learned of the diagnosis during my pregnancy and were able to make plans based on the various possible outcomes described to us by our outstanding medical team. We were fortunate to have the support and freedom to do what we thought best for our daughter.
We did not set up a nursery. We told our two young sons that they might not have a sister for very long.
In the end, our Bessie went to term and lived for three peaceful hours in our arms without any intervention. She took a breath every thirty seconds or so but did not cry or open her eyes. She did not exhibit any signs of distress at all -- and so we feel we gave her the chance to live the life she was given, however much we wanted a different outcome.
That was 12 years ago, and we miss her still.
139
Bessie's mom, I send my heartfelt condolences to you and your family. No words can be of comfort. I am sorry.
1
We too had a Trisomy 18 baby named Sam. He died in the birthing process at 41 weeks, so we did not have to make a difficult decision upon his birth. My Ob-Gyn did not see the tell-tale markers for T-18 during the sonograms, and it wasn't until week 39 that abnormalities were discovered at a high-risk clinic. An amniocentesis confirmed the prognosis a few days later. The doctor discussed the options should Sam be born alive.
The choice between 'no extraordinary measures' and life support is one that no parent should have to face. Compound that horror by having to choose how and when your child will die. Imagine having to make these choices when you are in a state of unimaginable shock and grief. We bring into the room a moral code built from years of often innocuous life choices. We have a vague sense of how we would handle moments of crisis, based on a hypothetical alignment to these personal morals and ethics. We make the choice based on tenuous connection to a belief set and then spend years questioning both our decisions and beliefs. In the end, though, we know that the protection of our children is our most hard-wired biological task. For this mom of Sam, the author's epiphany aligns most succinctly with the biological reality.
The choice between 'no extraordinary measures' and life support is one that no parent should have to face. Compound that horror by having to choose how and when your child will die. Imagine having to make these choices when you are in a state of unimaginable shock and grief. We bring into the room a moral code built from years of often innocuous life choices. We have a vague sense of how we would handle moments of crisis, based on a hypothetical alignment to these personal morals and ethics. We make the choice based on tenuous connection to a belief set and then spend years questioning both our decisions and beliefs. In the end, though, we know that the protection of our children is our most hard-wired biological task. For this mom of Sam, the author's epiphany aligns most succinctly with the biological reality.
53
why wasn't the amnio done until 39 weeks??
2
Amnios are not standard procedure for those in low-risk groups. I was young (29) and there was no indication there was a problem until the doctor noticed an irregular heartbeat at 39 weeks. She sent me to the high risk clinic to make sure all was OK. It wasn't. After a high-level sonogram, they were 99% sure it was T-18 but wanted to do an amnio to know what they would be dealing with at birth. I did, though, have an amnio with my second child even though I still wasn't labeled high risk.
2
I am so sorry for Sam's loss. I don't think I would have had the strength to walk that final mile in your shoes. We all can imagine what we would do but only Sam's Mom and Dad can feel in their hearts what is best for their baby and only Sam's Mom and Dad live with his loss for the rest of their lives. Thank you for sharing your unimaginable pain with us.
19
It is a devastating story and I can keenly relate to the heartbreak and desperation communicated in these words. I certainly also understand, though don't share, the parents aversion to genetic testing and abortion. However, the author's statement that genetic testing is only performed to offer the parents the option to abort a genetically abnormal fetus is wrong. For instance, after our miscarriage, my wife and I were intensely and invaluably relieved to find out, through genetic testing that our second and third babies were healthy. Further, advance notice of genetic conditions can provide the parents and medical professionals the means to prepare for difficult births and save babies lives. It does not seem to me that the latter would be applicable to the story relayed in this article, but is certainly true for many parents.
Please do not consider genetic testing only as an authorization of abortions. This is a fallacy that minimizes the great medical and emotional value of such information.
Please do not consider genetic testing only as an authorization of abortions. This is a fallacy that minimizes the great medical and emotional value of such information.
92
Let me be sure I understand. It would have been "theologically" unacceptable to abort the genetically defective fetus, but it was "theologically" acceptable to allow the living, albeit defective baby to suffocate to death in what had to be an excruciating 10-15 minutes? Was it God's answer to your prayers that made that decision possible, or just the realization, when confronted with what was no longer a "theological" abstracton, of the emotional and financial cost of keeping the child?
33
How does scolding the parents help at this point? When they refused prenatal testing they had no idea that they'd face a choice like this one later on. Most parents who refuse prenatal testing are willing to rear a child with any number of challenges, but very few know of, or are counseled about, genetic mutations that usually result in early and often painful death. In any event, judging them does nothing for anyone other than, perhaps, the one doing the judging, who gets to feel superior for a while.
30
I think that this is the point of the article.
Prior to this life experience the questions and ethics surrounding abortion and the death of an infant seemed black and white to the author and his wife. After this experience the author began to see the shades of grey and realized that terminating the child's life would have been merciful.
This is an important story to tell. There are many many people who see issues as black and white because they have not had the life experiences that teach them how much "grayer" these issues are in reality.
Prior to this life experience the questions and ethics surrounding abortion and the death of an infant seemed black and white to the author and his wife. After this experience the author began to see the shades of grey and realized that terminating the child's life would have been merciful.
This is an important story to tell. There are many many people who see issues as black and white because they have not had the life experiences that teach them how much "grayer" these issues are in reality.
31
Our son died of complications of T-18, and theological considerations played no part in our journey. My son had a name, and it was not "genetically defective fetus". Alex, prior to my experience and in my younger days of self-righteousness, I may have written your same words. 'Tis true how tragedy can help one walk a wiser path.
3
How sad that this family has to remember their son's final moments as ones of suffering. Suffering (on the part of the infant -- of course the parents will always suffer in these sad situations) should never be a part of a planned withdrawal of care. As a neonatologist I have been a part of many similar situations and managing pain and shortness of breath is always a top priority. Morphine and other medications can be used to treat air hunger without the intent being to "kill the baby". For what it's worth, I do think euthanasia has a place in the care of certain terminally ill patients, but cases like this where the infant will pass away quickly it isn't necessary. Rather than making the parents consider the upsetting prospect of "killing their baby", hospital staff should have ensured he remained comfortable while he passed away naturally.
180
As an (adult) ICU doctor, I agree. We manage air hunger successfully with medications so that the withdrawal of ventilator support does not leave the patient gasping for air. My biggest priorities in those moments are 1) make sure the patient does not suffer and 2) make sure the family isn't left with this kind of memory.
157
I am a 40 year physician with a great deal of experience serving children with developmental disabilities and their families I concur with this opinion. I sympathize with those who believe that assisted death is humane in some situations, but I do not believe that euthanasia is either ethically acceptable or necessary. Furthermore, making euthanasia the responsibility of either physicians or parents compromises the standing of both. Intent does matter, and the neonatologist demonstrates a means of satisfying both morality and humanity. I have seen many people die, and know that it need not be fearsome or ghastly.
22
I love the medical personnel disassociating themselves from the patient's experience of pain. It's not "air hunger," -- it's suffocation. And it's excruciatingly painful. Even the best pain killers can't control all pain.
8
One of the most painful and emotionally devastating things I have ever read. Thank you for being willing and able to share it.
26
Thank you for sharing this intimate and moving story. You were brave to do what you did. And I can empathize with your feelings. There are many of us (myself included) who have helplessly watched a loved one die a stressful natural death when we, as humans, now have the means to make it peaceful and pain free. That memory, now 25 years old, lives with me every day.
As a compassionate society, we need to learn to let go of the notion that assistance or medication when death is inevitable is somehow "wrong."
Yes, you should have killed your baby. But you wouldn't have been allowed to. Even if you had been and chose to refuse that option, you could never had predicted how the end you were present for would have been.
I hope you find peace in knowing that you did do the right thing and that your story may help many in the same situation find a more peaceful end.
As a compassionate society, we need to learn to let go of the notion that assistance or medication when death is inevitable is somehow "wrong."
Yes, you should have killed your baby. But you wouldn't have been allowed to. Even if you had been and chose to refuse that option, you could never had predicted how the end you were present for would have been.
I hope you find peace in knowing that you did do the right thing and that your story may help many in the same situation find a more peaceful end.
12
The author is a philosophy professor, and the piece is written in the second person. I'm confused - is this the author's child, or is it a hypothetical ethical question?
10
Sometimes an author writes in second person when the subject matter is too unbearable to think closely about. That bit of distance is needed to get the story into words so others may have the choice to read it or not.
12
I think the use of the second person was deliberate and intended for this exact effect. The detail and emotion of the piece hints that it is about his own child, but the use of second person makes it unclear. I think if he wrote the story in first person and then asked, "What would you do if it were your child?", it wouldn't have the same effect as telling the story this way.
7
I assumed this was a hypothetical situation, though surely not unrealistic, meant to illustrate a philosophical quagmire.
1
First, I cannot imagine how anyone can read your article and not cry.
I have always believed that an essential part of medical care is relieving pain; it is at least as important as extending life.
After all every one of us will die. None of us should suffer needlessly.
I hope your story will encourage more physicians to be much more proactive in treating severe pain.
Thank you for writing this article, it must have been a terrible for you to revisit this tragic experience any more than you already do.
I have always believed that an essential part of medical care is relieving pain; it is at least as important as extending life.
After all every one of us will die. None of us should suffer needlessly.
I hope your story will encourage more physicians to be much more proactive in treating severe pain.
Thank you for writing this article, it must have been a terrible for you to revisit this tragic experience any more than you already do.
14
If Sam could feel pain, he could also experience pleasure. Would you have denied him the immeasurable joy of motherly love? The transitions of life (birth to life and life to death) are usually filled with struggles. We can not eliminate all suffering but we can offer love and solace.
5
But the doctor confirmed that his life would be filled with much, much more pain than pleasurable moments. I can't imagine how atrocious it must feel to have to watch your child die. But if the alternative is to force him through a short and painful existence where his brain could barely function let alone his lungs, I think there is much more mercy in death.
7
You are assuming that a newborn infant can even experience joy. Considering their immature brain development (and even more so in this case), it's unlikely that this child could experience anything other than pain.
12
I'm so sorry for you & your family's loss. Thank you for sharing your story as it will help others dealing with such difficult circumstances. I hope it helped you a little also.
I am a strong supporter of "right to die", for adults. I had never thought about the same rights for children. Your story makes me realize we must champion for the right to die (or live with less suffering) for all ages.
Many doctors are now changing the way they think. An elderly doctor neighbor of mine is just one example. In his younger years he could only understand preserving life at all costs. He now sees things differently. Reducing suffering should be our primary goal.
I am a strong supporter of "right to die", for adults. I had never thought about the same rights for children. Your story makes me realize we must champion for the right to die (or live with less suffering) for all ages.
Many doctors are now changing the way they think. An elderly doctor neighbor of mine is just one example. In his younger years he could only understand preserving life at all costs. He now sees things differently. Reducing suffering should be our primary goal.
22
I'm 70. Relatively healthy. Hopefully, death won't happen too soon. I still want more.
But there it is. Will I and my family be able to let go. Will we be able to accept a decent death? Will we even know what that means?
Perhaps all that can be hoped for is to be able to have the freedom to be in control of that final moment. To be able to accept. To be able join realistic expectation and personal need.
You should have killed your baby is not a model for decency.
But there it is. Will I and my family be able to let go. Will we be able to accept a decent death? Will we even know what that means?
Perhaps all that can be hoped for is to be able to have the freedom to be in control of that final moment. To be able to accept. To be able join realistic expectation and personal need.
You should have killed your baby is not a model for decency.
4
I am so sorry for your experience. I do want to point out that fetal testing is not done or the information from it used simply to decide whether to end a pregnancy. It can be invaluable in setting expectations and helping parents plan, if need be, for various possibilities. I also think that while your wife's choice is completely understandable, you want to be careful not to imply that those who choose other options are somehow making a worse decision. Carrying a baby to full-term that cannot live on its own is a very difficult thing. Is it really a blessing that you and your wife didn't know until the birth? I muse on this because it's a very human issue that cannot and should not invite blame or aspersions. This is why medical/ethical issues are so difficult. Wouldn't it be nice if we never had to make such choices? The thing is, no matter what one does, there will always be questions and doubts. And we live with those. But the conclusion, "You should have killed your baby," while startling and provocative, doesn't really convince, because "killing" is not the same as "letting go."
17
I was coming to the comments section to post exactly this.
I am a perinatologist, and I often have patients who are, for one reason or another, at increased risk of having a child with a chromosomal abnormality, and they ask me if they "should" have genetic testing. This testing now includes many non-invasive options that can give good information about risk of chromosomal abnormalities without the risk of amniocentsis (although amnio is still the gold standard). Very often they tell me that it would not change their decision to continue the pregnancy so there is no reason to consider testing.
My answer is that this is a personal decision. If they would consider termination, then testing is recommended. If not, there are still reasons to consider testing, such as parental mental well being and preparation, and planning of medical care for the pregnancy. This includes options such as not monitoring in labor, no cesarean delivery for fetal benefit, and perinatal hospice for babies with a diagnosis with a poor prognosis such as trisomy 18).
I am a perinatologist, and I often have patients who are, for one reason or another, at increased risk of having a child with a chromosomal abnormality, and they ask me if they "should" have genetic testing. This testing now includes many non-invasive options that can give good information about risk of chromosomal abnormalities without the risk of amniocentsis (although amnio is still the gold standard). Very often they tell me that it would not change their decision to continue the pregnancy so there is no reason to consider testing.
My answer is that this is a personal decision. If they would consider termination, then testing is recommended. If not, there are still reasons to consider testing, such as parental mental well being and preparation, and planning of medical care for the pregnancy. This includes options such as not monitoring in labor, no cesarean delivery for fetal benefit, and perinatal hospice for babies with a diagnosis with a poor prognosis such as trisomy 18).
6
Trisomy 18 is terrible, and I'm sorry for your loss.
It bears noting, as you do in your deep reflection on this tragedy, that people have terminations for good and kind reasons, and that the folks who slander abortion (as your wife did, frankly) are rarely the people who have been forced to make difficult decisions. Religious and "moral" objections to the ability for someone else to decide the course of a pregnancy are rarely moral, simply moralizing.
It bears noting, as you do in your deep reflection on this tragedy, that people have terminations for good and kind reasons, and that the folks who slander abortion (as your wife did, frankly) are rarely the people who have been forced to make difficult decisions. Religious and "moral" objections to the ability for someone else to decide the course of a pregnancy are rarely moral, simply moralizing.
33
I am so sorry for your family's loss, and for Sam's struggles and too-soon death.
Genetic testing is not performed solely to abort a fetus who has abnormalities. It is performed to diagnose whether any abnormalities exist, and then help parents prepare in advance for their child. Would it have helped you to know ahead of time?
Your harrowing experience with the death of your son led to an epiphany about euthanasia. I wonder if your wife had sat with you and your son through his death, she may have expanded her thinking on abortion? Would abortion have been a 'kinder' option for such a severely disabled baby?
Genetic testing is not performed solely to abort a fetus who has abnormalities. It is performed to diagnose whether any abnormalities exist, and then help parents prepare in advance for their child. Would it have helped you to know ahead of time?
Your harrowing experience with the death of your son led to an epiphany about euthanasia. I wonder if your wife had sat with you and your son through his death, she may have expanded her thinking on abortion? Would abortion have been a 'kinder' option for such a severely disabled baby?
26
Modern medicine can legally provide terminal sedation for adults dying of respiratory failure. Medication can ease the air hunger they feel, making for a peaceful death. I experienced that with the death of my mother 22 years ago. I can't help wonder why something like that couldn't be done for that poor infant.
16
I think it's more complicated.
I think that the way I would have thought would be along the lines: "God put me in this situation for a reason; what am I supposed to do?" On one hand, letting the baby die on his own looks like cruelty. On the other hand, killing the baby looks disturbingly like eugenics. On the third hand, the mother has her own set of considerations - and her feelings as well.
In this situation, the maximum of my pastor is "Do what your heart tells you to do", i.e. make a choice you think is the most warranted. Realistically, anything you do has pros and cons, and you are looking for a decision that is most acceptable from a psychological point of view - but, at the same time, it is a decision that you are willing to own, and at the very least to be able to tell yourself "I thought it was right at the time".
There will be people for whom letting the baby die on his own would be totally unacceptable. There are people for whom killing the baby would be. Probably you are neither; try to figure out what you can live with, because probably there is no best solution here.
I think that the way I would have thought would be along the lines: "God put me in this situation for a reason; what am I supposed to do?" On one hand, letting the baby die on his own looks like cruelty. On the other hand, killing the baby looks disturbingly like eugenics. On the third hand, the mother has her own set of considerations - and her feelings as well.
In this situation, the maximum of my pastor is "Do what your heart tells you to do", i.e. make a choice you think is the most warranted. Realistically, anything you do has pros and cons, and you are looking for a decision that is most acceptable from a psychological point of view - but, at the same time, it is a decision that you are willing to own, and at the very least to be able to tell yourself "I thought it was right at the time".
There will be people for whom letting the baby die on his own would be totally unacceptable. There are people for whom killing the baby would be. Probably you are neither; try to figure out what you can live with, because probably there is no best solution here.
1
I'm in tears. The promise of birth, a new child, instantly crashing into the violence of imminent death--and the heartless choice of the timing left to grief-stricken parents.
Not every choice is this stark; this clear cut. But, equally, life prolonged at any cost, defined by maintaining the physical body alone-- cannot be defined as life but only a prolonged death.
We are incapable of knowing--for a fact--- that hopeless medical cases will always remain hopeless. But that is why we have reason; to decide for a compassionate and merciful death rather than prolonging another's mere biological life for our own comfort.
_______
Too often, the battle over abortion, euthanasia, or further hopeless treatments allow our loved ones to become inanimate symbols of rigid war cries and put our compassion for their actual beings beyond reach.
In light of our medical prowess we need to relearn what we mean about the sanctity of life--which has never meant merely biological maintenance.
Not every choice is this stark; this clear cut. But, equally, life prolonged at any cost, defined by maintaining the physical body alone-- cannot be defined as life but only a prolonged death.
We are incapable of knowing--for a fact--- that hopeless medical cases will always remain hopeless. But that is why we have reason; to decide for a compassionate and merciful death rather than prolonging another's mere biological life for our own comfort.
_______
Too often, the battle over abortion, euthanasia, or further hopeless treatments allow our loved ones to become inanimate symbols of rigid war cries and put our compassion for their actual beings beyond reach.
In light of our medical prowess we need to relearn what we mean about the sanctity of life--which has never meant merely biological maintenance.
1
Perhaps having the test would have made sense. Even though you wouldn't have aborted the baby you could have made better plans before hand on how you would have handled this condition. I am sorry for your having to face these difficult decisions.
6
So very sorry for you and your family.
Nobody has any right to judge, nor should anyone judge parents who know of and awful diagnosis before birth and decide to terminate a pregnancy. Nobody cares more about your child than you, and it is nobody else's business.
Nobody has any right to judge, nor should anyone judge parents who know of and awful diagnosis before birth and decide to terminate a pregnancy. Nobody cares more about your child than you, and it is nobody else's business.
6
Interesting article. As a father who had to watch his fourteen-year-old son die in a hospital, I understand the sentiment. And I do mean sentiment. This piece is all about the shameful manipulation of readers' sentimental responses to a terrible situation in order to promote a right-to-die political agenda. Comstock's argument depends entirely on putting words into the mouth of a newborn. My God! (I'm an atheist, by the way). And I thought Trump was bad, or perhaps GOOD at taking advantage of the passions in order to hoodwink them! Surely a philosophy professor understands how ridiculous this is. But maybe Comstock also knows that people are easily manipulated. This appeal to pathos is sheer pablum.
10
A most heartless comment. You are still in a rage over your son's untimely death and rightly so. Be in a rage, just don't slip into a judgemental person. You then lose your decency as a person and these days we need all the decent people we can round up.
7
In a rage? Hardly. Sad? Very much so. Not a minute goes by.... And judgmental? Yes, absolutely. I claim "judgmental." I own the term because I am highly judgmental when people fall for arguments that are so thin they amount to pablum. Comstock's piece is a patently transparent manipulation of emotion in order to persuade readers to embrace a simplistic position. In reality the ethical issue invoked here is incredibly complex and requires considerable thought. Never though does the author concede any nuance. But lastly, and this was the part of the article that makes me retch, the idea that a parent years after the event would focus intently on this one aspect of his or her child's death (I should have had the baby killed) is just not plausible. That is a figment of Comstock's imagination so he can make his right-to-die/physician assisted suicide argument. The whole piece is just a stocking horse for other issues.
1
"Right-to-die" is not a political agenda, it's a important philosophical question that needs to be discussed...then political action can be taken. The author is telling this story from the parent's perspective, including how that parent interacted with his son. Is it designed to make an argument for intervention in dying? Yes. Is that a problem? No. It's unfortunate that you did not take this opportunity make a counter argument instead of resorting to inflammatory language.
1
A devastating story. And yet I cannot help but think it would all have been better if there wasn't such an anti-abortion stance in the mother. It seems a twisted thing --- to have infant and parent go through this horrible episode when it might have been prevented. What good came out of this? How was this more moral or more humane for any of the parties involved? I wish you strength in your grief and hope the passage of time will lessen your pain.
18
As a pediatrician and an anesthesiologist, I had many situations similar to Sam's. However, the article presents an either or: leave him on life support (respirator) or "kill him." Had I been Sam's physician, I would have treated the air hunger that made the last minutes a his life an ordeal. A small dose of a narcotic medication, given intravenously, would have removed Sam's suffering. It would not have killed him. His Trisomy 18 was killing him. Would the narcotic have shortened what little time he had left? Yes. But, this is a quality of life issue. The narcotic blunts the respiratory drive as well as the intense anxiety associated with rising carbon dioxide levels in the brain (the consequence of not breathing). If the narcotic medication, given to treat the horrible anxiety of increased blood/brain levels of carbon dioxide, had cut Sam's remaining time in half, it would still have, based on my experience, provided him with a better quality of life.
96
Exactly. Why don't people get this? Often, I suppose, because they haven't been there.
9
As a person with asthma who has lost conscious and had to been revived more than once, I assure you that not breathing causes more than "intense anxiety" -- it causes searing, burning pain throughout your lungs. While I would like to believe a little morphine would fix that problem, no one actually knows whether it's enough to actually relive the intense pain for lack of oxygen (and certainly the dying are in no condition to tell you otherwise). Medications to end death quickly when death is certain would be more humane than shooting someone up with morphine and hoping for the best.
Please forgive yourself. You had no different choice. He was loved and that is everything.
13
He did have a different choice. He has to live with the one he mad.
2
This is one of the most gut wrenching essays i have ever read. I read it with tears streaming down my face and i rarely never cry. Gary Comstock, yes, you should have "killed" your baby. Over my very long life i have put countless cats and dogs to sleep. I never thought of it as killing them. I thought of it as my moral duty to have them leave this world in a most peaceful, painless, quick manner. Humans should have this right too whether only days old or elderly.
God is waiting patiently?, for our thinking to evolve.
God is waiting patiently?, for our thinking to evolve.
14
My heart breaks for you, your wife and your extended family. The death of an infant is anathema to life. It is exactly what shouldn't be. But it happens and when it does, there is nothing more heartbreaking. I only have one critique of your article. You should not have "killed your baby." Instead, you should have been allowed to "help your baby die." With the knowledge we have now, and with what you personally witnessed, there can be no doubt that hastening death would have been the most compassionate thing that could have been done for little Sam. May the Lord hold him in His gentle arms forever.
11
My deepest sympathies to you and your family for this terrible situation and loss.
7
This is a horrible situation for any parent (or anyone) to be in and I would hesitate before presuming an answer on someone in such a situation.
Nonetheless, the language is troubling. It is one thing to administer painkillers-- say in hospice-- to ease the pain of a dying patient... even when one knows this can hasten death. It is quite something else to "kill" [that is the word used by the author]. Inevitably, as always, the idea of a physician doing this (or facilitating it, or something) comes up.
Nonetheless, the language is troubling. It is one thing to administer painkillers-- say in hospice-- to ease the pain of a dying patient... even when one knows this can hasten death. It is quite something else to "kill" [that is the word used by the author]. Inevitably, as always, the idea of a physician doing this (or facilitating it, or something) comes up.
3
Elders with Alzheimer's too are unable to voice their choice any more than this newborn. I've watched 3 of our 4 parents pass away with Alzheimer's slowly, painfully, unable to voice their desires any more than a newborn as the disease robbed them of reason and forced by law to die a death wthout dignity. They deserved a choice.
13
But you cannot make a choice once you have dementia.
Even in states or nations with "assisted suicide" laws....you must be 100% in your right mind, and able to consent to suicide. You must be able to self-administer the drugs as well.
It absolutely DOES NOT APPLY to those with dementia, as they are incapable of consent.
Even in states or nations with "assisted suicide" laws....you must be 100% in your right mind, and able to consent to suicide. You must be able to self-administer the drugs as well.
It absolutely DOES NOT APPLY to those with dementia, as they are incapable of consent.
3
My husband and I just put down a beloved golden retriever, much too young to leave us, when it was clear she couldn't overcome health issues. The vet injected something that relieved her anxiety and allowed her to quickly drift into sleep, and then an overdose of anesthetic that allowed her heart to stop without pain. My first thought: Why hadn't a physician done the same for my elderly father, dying of COPD, struggling for breath until the end?
24
Nancy, totally agree. I've begun insisting that my vets give our pets a synthetic opiate before ending their lives, that their last moments should be as pain-free and euphoric as possible. I've had pets who went out on their own terms, and others who needed help to achieve a peaceful death. The baby in this story was born without a future, but he should have been given an opiate when taken off the ventilator, so that neither he nor his father would have suffered as they did.
3
Rather, amniotic testing could have given you the information needed very much earlier, so that the decision could have been made to terminate the pregnancy without pain to the fetus, with less risk to the mother than giving birth and with somewhat less pain to the parents than going through this ordeal.
15
Our baby with a genetic disorder died just over 10 years ago. She died in those harrowing few hours just after open heart surgery to fix one of the many problems brought on by her genetic condition (DiGeorge syndrome). I look back and wish I had done so many things differently, but it is a black whole to look back. Perhaps, you might have given your baby an easier death. But, I can assure you that you would still have looked back at that and questioned it. All of us that have lost a baby look back and wonder what we could have done differently. And, so many of us blame ourselves. We blame ourselves for the condition itself. Was it the prenatal vitamins that I took? Was it the food that I ate? Was it the shampoo that I used that caused this? And, then we think back at the death. Could it have been less painful? Should I have been there? Should I not have been there? Did I get any pictures? And, did I even get to hold my baby? There are no good answers to this, just a need to move forward and try not to judge ourselves or anyone else that is faced with this beyond horrible loss of love.
6
How was this better than aborting the fetus?
15
You didn't kill your baby. Nature did. This is nature's way. Call it God if you like. More people with severely challenged infants should let nature it's course. What are the other options? Suffering for you, suffering for the child, likely bankruptcy, likely end of your marriage.
Sorry for your loss.
Sorry for your loss.
1
In the field of palliative cancer care we have reached the point where experienced professionals, using a variety of drugs, can maintain an excellent quality of life for their patients. Thus, it would seem to be very straight-forward to apply similar approaches to infants such as this. Alternatively, a counselor could talk with the parents, have them say their goodbye to the infant, and then have a professional remove the breathing tube.
3
I guess excellent quality of life is a matter of personal opinion. As a retired cancer doctor, I would see patients whose pain was controlled when they were lying flat in bed. When they attempted to sit with their collapsed vertebrae, the pain is agonizing. Levels of pain medicine adequate for bed rest were never adequate for anything more than that. Levels adequate for more than that produced sedation and confusion . Existential anxiety was handled with benzodiazepines. And don't tell me about vertebroplasty. I knew about it. The studies are marginal at best and it's not going to happen in hospice.
With adults who choose to discontinue ventilator life support, we usually administer morphine to keep them sedated and to reduce air hunger, the sense of suffocation. The intent is not to administer a lethal dose of morphine. Is this a real distinction? I'm not sure. When done according to the dying person's considered decision and when the person appears to be peaceful during the final minutes or hours (hours seem very long to those watching and waiting), it still feels sad but not horrifying.
6
My water broke halfway into my first pregnancy. Our options were to attempt to continue the pregnancy another four weeks to the outside edge of viability, or terminate. We were told that on the tiny chance he survived, he would be profoundly disabled, never able to dress or feed himself or attend school.
It was a terrible but clear decision for us to terminate the pregnancy. I don't regret it, but I will wonder probably for the rest of my life what the other path would have held and if our child would have agreed with our choice.
Having traveled that darkest of places, my conclusion is that the only sane, compassionate, and mature answer is to trust parents and their doctors and support them in their decisions. To dictate to any anguished mother or father what their choice must be is deeply cruel.
I am so sorry for your loss and wish you peace.
It was a terrible but clear decision for us to terminate the pregnancy. I don't regret it, but I will wonder probably for the rest of my life what the other path would have held and if our child would have agreed with our choice.
Having traveled that darkest of places, my conclusion is that the only sane, compassionate, and mature answer is to trust parents and their doctors and support them in their decisions. To dictate to any anguished mother or father what their choice must be is deeply cruel.
I am so sorry for your loss and wish you peace.
16
Try as I might, I cannot resolve the conflict between moral and theological opposition to abortion and the decision to allow the living child to suffer the 20 minute, "gruesome struggle" that ended his life. To me, the only consistent decision would be to keep the baby alive for as long as possible by any means possible.
I don't mind taking chances in which I risk suffering in my own life. I completely reject taking chances that will produce suffering in the lives of others.
I don't mind taking chances in which I risk suffering in my own life. I completely reject taking chances that will produce suffering in the lives of others.
10
Since the US is slowly approaching the crossroad to possibly implement "universal healthcare" for most people, who will make such decisions concerning the "viability of life" at birth?
An actuary, medical staff, the child's parents or some government bureaucrat?
Beyond the dollars and cents, only the parents have the vested interest at heart.
An actuary, medical staff, the child's parents or some government bureaucrat?
Beyond the dollars and cents, only the parents have the vested interest at heart.
1
I am responding in frustration to the specter that this commenter raises of the so-called 'death committees' that were wrongly advertised to combat the Affordable Care Act 8 yrs ago.
The writer is naive if he ignores the long standing fact that health insurers have long wielded such capacity to significantly affect life and death decisions by denial of pre-certification for patients who need expensive care. They were and continue to be the unwelcome intruder into life and death decisions more than any hypothetical 'death committee.'
And neither has any place in these responses to such a sad and sub-optimally handled set of awful alternatives to the parents of this sick child.
The writer is naive if he ignores the long standing fact that health insurers have long wielded such capacity to significantly affect life and death decisions by denial of pre-certification for patients who need expensive care. They were and continue to be the unwelcome intruder into life and death decisions more than any hypothetical 'death committee.'
And neither has any place in these responses to such a sad and sub-optimally handled set of awful alternatives to the parents of this sick child.
5
May Sam's memory be for a blessing.
I wish you all peace. I thank you for this article.
I wish you all peace. I thank you for this article.
12
A beautiful, compelling testimony to your own pain as well as Sam's. There is a bit of grey in that either/or choice, however. I had to take my fatally injured father off a respirator and other machines. The neurologist assured me he had no consciousness and would not feel anything. We still made sure he was sedated. One doctor warned me that too much sedation might actually do him in. I told him that it was more important to me that he feel no pain. What I didn't tell him was that I thought, "thank God."
10
I experienced a similar situation with my mother, who was dying of metastatic ovarian cancer and had signed a DNR. She was dying from cancerous fluid filling her lungs. The doctors wouldn't give her "too much" morphine, because it would end her life. Instead, she struggled for air, slowly dying, for almost 12 hours after the point of signing her DNR. It was torture for the family to watch and, I'm sure, for her to endure. No one should have to die like that when there are medications that could quickly and easily end their suffering.
8
There is no "right" answer to dilemmas such as this. There is no "good" solution. There is only the attempt to do the right thing, as best one can define right. To cause the least pain to the helpless. The least suffering. The greatest good for all involved. The grief cannot be avoided.
15
Thank you for your wonderful article which succinctly shows the moral dilemmas faced when life comes to an end. Lately, with the Charlie Gard case in the headlines, there is a camp which advocates preserving life at all costs. What is missing from this is the enormous suffering that can be perpetuated on the dying. Doctors and nurses frequently experience moral qualms about prolonging suffering, not alleviating it. The patient must come first, not the feelings of the family, or their non acceptance of an inevitable outcome. The resources of our health care system are not limitless, especially in a universal health care system. Why, as a culture, have we barely progressed in accepting the natural process of death?
12
Wow. Thank you so much for sharing. I am a recently graduated pediatrician. And I am a mother. And through both of these journeys I been witness to hardship and difficult decisions and wholeheartedly agree with this thought. I have watched families put aside the expectation of society, that "love" means doing everything for their babies and children, and realizing that the one job of parents is to do what's best for their child, and "love" means letting go, and hopefully letting go peacefully. Sometimes this means in an assisted fashion, to prevent suffering. Sharing your son's story will hopefully give people who are going through similar journeys food for thought. Thank you.
15
This is gut-wrenching to read. I can only imagine how hard it must've been for you to write. Thank you. And I can't help but agree that the assisted option should be allowed.
21
This all too familiar tragedy brings to mind the many families similarly affected whom I was privileged to care for. Two comments.
First, in situations involving severe cognitive impairment and likely poor quality of life, the family is the primary decider of how much medical intervention is appropriate. Medical professionals can offer a range of ethically reasonable approaches, but it the family's right to choose what is best for their child and themselves. I have supported loving families who chose to end invasive medical support for babies similar to Sam and have provided equally strong support to parents who chose to continue intensive care hoping for improvement. No one outside the immediate family has any business criticizing these agonizing and loving decisions.
Second, an amniocentesis provides information, not a mandate. Even if a family is totally opposed to abortion, a diagnosis of a lethal malformation or likely severely limited quality of life can guide delivery room care. Neonatal resuscitation in the presence of a problem with a hopeless prognosis is not mandatory. Given such a tragic diagnosis, one can discuss options with the family. Many families have agreed to have us assess the baby after basic resuscitative measures. If we can validate the diagnosis, we can then honor the parents' request not to provide invasive support and pass the baby back for the parents to hold.
First, in situations involving severe cognitive impairment and likely poor quality of life, the family is the primary decider of how much medical intervention is appropriate. Medical professionals can offer a range of ethically reasonable approaches, but it the family's right to choose what is best for their child and themselves. I have supported loving families who chose to end invasive medical support for babies similar to Sam and have provided equally strong support to parents who chose to continue intensive care hoping for improvement. No one outside the immediate family has any business criticizing these agonizing and loving decisions.
Second, an amniocentesis provides information, not a mandate. Even if a family is totally opposed to abortion, a diagnosis of a lethal malformation or likely severely limited quality of life can guide delivery room care. Neonatal resuscitation in the presence of a problem with a hopeless prognosis is not mandatory. Given such a tragic diagnosis, one can discuss options with the family. Many families have agreed to have us assess the baby after basic resuscitative measures. If we can validate the diagnosis, we can then honor the parents' request not to provide invasive support and pass the baby back for the parents to hold.
32
You are right, and it should be your decision. Peace.
14
You showed you son love during his gestation and during his ever so brief life. As a parent with no living children, I know your pain - writing is cathartic, I still write notes to my dead children, who would now be young adults. We are not far removed from the generations who lost children (and siblings) in infancy and early childhood - before my generation (Baby Boomer), it was common. It was less-common for my generation, and rare for those who follow, and they have become insulated from a ritual that was a simple fact of life for our forebears - saying goodbye to our offspring. Medical science has come a long way to allowing babies to live, giving us false confidence that they all do. Your choice was your choice, don't allow anyone to judge you based on your decision. Pain & grief are part of life, and yours is the price for seeing Sam's face and holding him in your arms as he took his last breath. As time passes, the value of that moment will increase. I would swim the ocean for that chance.
8
SAMUEL Is an apt name to have in order to discuss Sam's ordeal. In Hebrew it is Shemu-El, or "Heard the Lord." Alas, it was for his parents and other relatives to do the hearing. And listening. All the alternatives for Sam were grim. He lived for a vanishingly brief moment, struggling to survive. And he died in what seemed an eternity, struggling to survive. I cannot imagine how his father felt holding Sam during the time of his son's life and death. Sam's mother and father were fortunate to have been surrounded by love and support. I had worked with a woman whose child died shortly after she was born. I believe that the baby had the same genetic condition as Sam. The medical staff stayed with her baby while she died. I can imagine profound sadness, but I cannot know all the emotions that the parents and staff felt. The question of euthanasia for a newborn is terrifying. I cannot imagine the sense of torment that would accompany such a decision. Though I do believe that there is some logic in allowing humans to have dignity in death, as we permit our pets. A good life. A good death. Is that too much to ask? Even for Sam?
10
Heartbreaking and courageous.
Genetic testing may not have changed the outcome for your family, but it is important whenever there is an abnormality that could be treated immediately after birth or addressed pre-birth. My niece was diagnosed with Downs Syndrome, pre-birth, and also with intestinal complications and a severe heart defect that can be common in children with Downs. Knowing this allowed my sister to deliver at a hospital that specializes in treating newborns with her particular diagnosis. The information and care they received prior to her birth also gave them time to consider their options and process their emotions as they prepared for a very different birth and parenting experience.
Genetic testing may not have changed the outcome for your family, but it is important whenever there is an abnormality that could be treated immediately after birth or addressed pre-birth. My niece was diagnosed with Downs Syndrome, pre-birth, and also with intestinal complications and a severe heart defect that can be common in children with Downs. Knowing this allowed my sister to deliver at a hospital that specializes in treating newborns with her particular diagnosis. The information and care they received prior to her birth also gave them time to consider their options and process their emotions as they prepared for a very different birth and parenting experience.
13
This article should naturally lead to a broader discussion, one about the cost of sustaining the life of one born with profound physical limitations, which will become more possible with bio-medical advances.
Over six decades ago I delivered groceries on Saturday, and among my customers was an elderly lady and her son, a middle age man whose guttural attempts at speaking and other behaviors indicated “profound intellectual disability.” His name, one I never heard before was Cleveland, which I can only assume was named for the current President who left office in 1897.
Cleveland seemed glad to have a visitor, and tried to connect with me. As a fourteen year old I didn't know what to do, as his mom put away the groceries and think was one of the rare ones who gave me a quarter tip. The woman didn't get any public assistance, as it didn't exist in those days.
But, there were institutions where infant Cleveland could have been deposited and she would never have had to think about him again. Did, Cleveland live a worthwhile life? We can calculate this in terms of contribution to the GDP; but a life is so much more. I can't imagine the senior citizen Cleveland life if his mother per-deceased him.
In 1950 this was not a public issue, and I'm not sure our political-legal system is an improvement over this private life that I was one of the few to breach. Public policy must be based on aggregations, generalities that must have a dehumanizing quality. Much is lost.
Over six decades ago I delivered groceries on Saturday, and among my customers was an elderly lady and her son, a middle age man whose guttural attempts at speaking and other behaviors indicated “profound intellectual disability.” His name, one I never heard before was Cleveland, which I can only assume was named for the current President who left office in 1897.
Cleveland seemed glad to have a visitor, and tried to connect with me. As a fourteen year old I didn't know what to do, as his mom put away the groceries and think was one of the rare ones who gave me a quarter tip. The woman didn't get any public assistance, as it didn't exist in those days.
But, there were institutions where infant Cleveland could have been deposited and she would never have had to think about him again. Did, Cleveland live a worthwhile life? We can calculate this in terms of contribution to the GDP; but a life is so much more. I can't imagine the senior citizen Cleveland life if his mother per-deceased him.
In 1950 this was not a public issue, and I'm not sure our political-legal system is an improvement over this private life that I was one of the few to breach. Public policy must be based on aggregations, generalities that must have a dehumanizing quality. Much is lost.
15
What a horrendous choice that no parent should have to make. As a parent and recent widow my hearts hurts for you. May you find strength to go on and peace that you loved your son as much as humanly possible and did the very best that you could for him. Life is totally unfair. All we are left with is love.
12
Prayers and love to you and your family. That would have been the hardest decision of my life but I believe I would have done the same. There is no comfort to offer except that you believe you did the right thing for him. That is the best we can do for our children.
9
What of a word to what parent owe their other children? Would it be best to endure 2-3 months of grief, or to live with the anxiety of pending death for years and the effects that would have on one's other children? Would they be injured by parents indefinitely in grief, unable to laugh or fully embrace their other children except in reference to that grief? Or parents' inability to model for them the acceptance of the inevitable and sadness at that realization?
7
My sincere condolences on your loss. While I understand the desire NOT to have amniocentesis, there are reasons to do it other than abortion. If, for example, a family knows that the child will die or have other needs, they might choose to deliver somewhere else, plan for taking of pictures, or other things that will allow them to begin the grieving (or planning for long-term care) processes much earlier. There are no right or wrong answers, but I just want other families who would never abort to think about other reasons that an amnio might be useful to them.
26
Extremely well done article for a most distressing and potentially life defeating decision for all involved...
12
Beautifully written. Your son was loved during his life.
23
I'm a Respiratory Therapist. Twenty years ago, here on the West Coast, I was involved in a case of a beautiful baby boy born with no functional brain. He was on a ventilator. He had no prognosis; his condition was not survivable.
The mother held him. I removed the ventilator as the MD administered morphine. The baby died in minutes, without visible distress.
The mother held him. I removed the ventilator as the MD administered morphine. The baby died in minutes, without visible distress.
41
Exactly. Why the baby in this presumably hypothetical case is not given morphine or something stronger is inexplicable. While the Catholic Church is against euthanasia, which the philosopher suggests here, it has nothing against easing someone's pain with medication, so long as the meds don't CAUSE the death. Needless to say, I don't see euthanasia as the only answer. Your experience proves it isn't. Kevorkian was so enthusiastic about it, it almost seems like he'd agree to kill you if you stubbed your toe.
6
A heartrending article, but I disagree that genetic testing is only done when the parent(s) would abort a genetically abnormal fetus. Testing may provide information essential to prenatal care and medical care at birth and beyond and in relation to planning for education and special services. For instance, when choosing a day care, whether special needs must be considered is helpful information.
17
My deepest sympathies go to you and your family on the loss of your son just after welcoming him into this world. I admire your ability to reflect on the choices, consequences, and our society's rather simplistic boundaries on your choices to navigate through this. Your work exploring this dilemma and opening more eyes to the costs imposed by a one-size-fits-all moral code imposed on end of life options HAS extended through all of us the legacy of Sam and his short but incredibly valuable life. Thank you for sharing your son's story.
15
You would now be feeling guilt after making either decision. What you did was right for the moment you were living through. You saw first hand that your son could not live. You sent him on his way with love and tears. You took the burden from him. Blessings to you and your family.
33
As my mother was slipping away I was lying in a chair next to her administering morphine through a pump. The doctors and nurses, including a team specially trained for the last few hours of a person's life, had said that the morphine would ease her suffering. She was no longer conscious.
So in the middle of the night I realize she had stopped breathing.
Since that night I frequently wrestle with whether I might have deprived her of a few minutes of consciousness with the morphine. Intellectually I know I didn't, and the physicians and nurses were skilled and compassionate. But, still, it is there. My mother.
I want to ask her: "Mom, tell me I did the right thing." But she doesn't answer. It is my struggle, and only mine.
And she was 90! How does one deal with this when the person is a baby? I can't comprehend. I just feel for the Comstocks. And we can all thank God or nature (whatever your beliefs) for our broken hearts.
So in the middle of the night I realize she had stopped breathing.
Since that night I frequently wrestle with whether I might have deprived her of a few minutes of consciousness with the morphine. Intellectually I know I didn't, and the physicians and nurses were skilled and compassionate. But, still, it is there. My mother.
I want to ask her: "Mom, tell me I did the right thing." But she doesn't answer. It is my struggle, and only mine.
And she was 90! How does one deal with this when the person is a baby? I can't comprehend. I just feel for the Comstocks. And we can all thank God or nature (whatever your beliefs) for our broken hearts.
30
I believe that you did the right thing. May you be at peace and may the memory of your mother be a blessing for you.
3
What a heart-wrenching narrative. And how sad that that a euthanasia alternative was not available for this infant as it is now becoming available in some states for adults with horrendous, fatal diseases. It must have been almost an inhuman burden on these parents to choose the path they did. However, they have spared this child a lifetime of nothingness and a burden that never would have been easier for them to bear. Many years ago I knew a couple who were facing the last years of their life painstaking hoist the "carriage" that held their daughter into church. She had spent her whole life on a breathing machine, a pacemaker, enveloped in electric blankets and on very expensive drugs to ward off infections and inhibit seizures. She was unresponsive to any stimuli -- either physical or mental. I cannot, in my most charitable moments, believe that this child should have been "saved". So my prayer is that the Comstocks can see that they chose the most loving act they could for their son. I also hope that this issue that is so fraught with conflict can advance our current perception of "Do No Harm", the directive toward physicians to a more humane understanding that shows that preserving blood flow in bodies is not an indicator for life.
54
This is a courageous article. So much easier to hide behind a principle than confront our responsibility for what we do - or don't do.
29
I am not sure what is the difference between performing euthanasia after the baby is born and performing abortion -to which the author's family is opposed to. Both are tragic and painful but I think abortion would save some additional pain.
74
You don't need to be sure. This was not your dilemma.
2
But isn't it great we live in a country where they had a CHOICE to do one or the other? As painful as this clearly was, they had the choice. Which is essential.
5
I am so sorry that you had to go through this. I cannot imagine your grief and want you to know that you made the right choice.
12
First, I am so sorry for the loss of your son, Sam. I am even sorrier that his life ended in suffering and that you suffered with him. Stories like yours are the reason that I am an avid supporter of Compassion in Dying. As an RN for 30 years, I witnessed many cases similar yours. Death is not the enemy. Death is a kind visitor coming only when desperately needed. No one should suffer in death. I support your decision and am in awe of your courage. You shouldn't have had to make such a dreadful choice. It just should have been easier, more humane. It is a shame that we treat animals more kindly than human beings. We must continue the work for change.
69
My infant son died after heart surgery while hooked up to a respirator and I watched as the heart monitor showed his heart failing. There was nothing I could do. While he was on that table, so small and vulnerable, and I was talking to him but not sure if he could hear me with the beep beep beep of the monitors and the noise of the other machines, a nurse slipped pamphlets into my lap. I looked at them and saw they were for parents of children who died. That gave me something to do. My son was still alive so I threw the pamphlets in the garbage and kept talking to Benjamin. A silly show of defying death, but of course of no lasting impact. How is a parent supposed to behave while watching their child die or afterward? I don't know how it is to be in the author's position, but I do know after Benjamin that it is not for me to judge any parents in the midst of grief. You do your best and then you try to keep doing that over and over, second-guessing yourself all the way.
24
There are many opinions here. I don't have one. I cannot fathom the pain and sadness your family experiences every day. All I can say is that Sam's purpose for was not to have a physical presence here on Earth, but somewhere, I believe he is having a profound impact on life here on Earth.
13
This would never have happened with a dog, the mother would have eaten him. As far as the people that say every life is sacred please provide your address, there are plenty of handicapped people that need full time care, I'm sure you'll be happy to spend all your time and money taking care of them.
27
every life is sacred. I feel honored that I am able to care for handicapped children and be paid for it. They have taught me the true meaning of life, love and family.
4
I've always found it ironic when people talk about hastening a human beings death when it is imminent and making it painless as being anti-religious. But for modern medicine, most of these babies would have died almost instantly. I fully understand the parent's dilemna as they are rightly emotionally invested in the baby and have a strong desire to see it survive. However, more reasonable minds of healthcare workers will almost universally tell you there is no good coming from it. Also, surely God did not intend to torture the baby and the parents. As a society, we need to change our views on this issue to be more supportive of euthanasia as a kinder solution.
46
I have been a physician for 35 years. I have sat with too many people in their last hours and minutes. I cannot imagine a merciful God who would encourage the suffering of a child, an elder, or anyone who cannot speak for himself. Euthanasia has it's dangers of course. There will always be the potential for abuse. But our intellects have allowed us to put into place reasonable safeguards. You were not given that option, and I apologize on behalf of the medical profession for that omission. I am also certain that your child felt your love and your sorrow and was comforted.
212
What would be the "reasonable" safeguards, doctor? This story is so eminently clearheaded, rational and humane, and your comments sensible and responsible, but there is something jumping-out-into-a-void about the idea of it for many people. How can we proceed and not feel afraid of the implications?
9
Let us also apologize for omitting the option of allowing this patient to die in peace and comfort, thereby addressing the needs and values of everyone involved. A little bit of morphine would've helped so much.
5
Most of us have been around expectant parents who, when asked if they want a boy or a girl, happily chirp "we don't care as long as it's healthy!" The next question to be considered should be "what will you do if it's not?" Despite the rosy pictures that are often painted, parenting disabled children can be mentally and physically crushing. Many post pictures of their adorable Down syndrome babies and toddlers, but are conspicuously silent once those children become teenagers and adults. If a parent recognizes the challenges and is willing to deal with them, then more power to them. If not, there should be no stigma about terminating a pregnancy or allowing a child to die painlessly.
43
Your story made me cry, and I am so sorry for you and your family's loss and enduring pain. There are no rights or wrongs here, but thank you for bringing to light a situation where there could potentially be another option that families can choose, ie euthanasia. For me, what I take away from your essay is, most importantly, how crucial it is to our lives to have freedom of choice. I personally would avail myself of any prenatal testing that could help me avoid a situation like this, but I respect others' rights not to. That respect has to include not being judgmental. I wish you peace.
36
My condolences for the loss of your baby, and the anguish that you could not avoid with all the wisdom and love in the world.
Unfortunately, most people will hear of this column not by reading it, where they can find at least some minimal but never suitable perspective on what you faced, but rather by having your story misrepresented by someone with an agenda who will deliberately avoid giving any such perspective whatsoever.
Unfortunately, most people will hear of this column not by reading it, where they can find at least some minimal but never suitable perspective on what you faced, but rather by having your story misrepresented by someone with an agenda who will deliberately avoid giving any such perspective whatsoever.
12
Yes, it must have been a terrible thing to watch and perhaps morphine or something should have been administered initially. HOWEVER, no -- you cannot KILL another human being, ever. The slippery slope is just that slippery... and man is beast enough that no individual or group of individuals can ever prescribe euthanasia. Struggle and pain are part of life -- having watched the dog's last hours of labored breathing before the vet came... or the cat who mewled in pain and the AM of the dreadful act seemed recovered. It may seem kind but kind can turn to convenient. And this is why I am glad Gorsuch is on the Supreme Court. OTOH seeking out an ice floe if one realizes one has dementia/Alzheimers -- that is an individual decision.
6
Thanks for bringing politics into this. Not.
14
amniocentesis. All women should get it. Even if you think you would never get an abortion, under any circumstances, once you are carrying a blighted fetus you might change your mind.
31
No, there is a real, though small, increased risk of miscarriage with amniocentesis. There are good reasons such as maternal age or familiy history to have an amnio, but I don't think it a good idea to use for all women, even if we end up not catching some terrible things like this.
Science is starting to be able to do some of the same tests with a simple blood test of the woman, and once we can do that reliably I would be in favor of recommending all women get that, since there is no risk to the fetus from that test.
Science is starting to be able to do some of the same tests with a simple blood test of the woman, and once we can do that reliably I would be in favor of recommending all women get that, since there is no risk to the fetus from that test.
2
Why is letting a fully gestated infant suffer and die a painful death at birth preferable to terminating the pregnancy by abortion? The article states that an amniocentesis could have revealed the condition, and all known science and experience is that Trisomy 18 almost never has good outcomes. Rather than getting the diagnosis in advance and making a difficult, but moral and compassionate choice to terminate the fetus, religious doctrine resulted to the suffering and painful death of a baby. Sigh.
495
how is it moral and compassionate? So the baby "fetus" would suffer during abortion, but because we don't see and experience it that makes it ok???
2
Determining when a fetus can feel pain (become sentient) is obviously difficult because we can't see pain behavior. However, neurologists know that more than a working brain is necessary for sentience. The nervous system must be fairly well developed for pain messages to reach the brain and for pain to be experienced. While there is some disagreement among experts regarding when sentience begins, there is no evidence that it can begin prior to 17 weeks, and the American College of Gynecologists says that it's likely to be 24 weeks. With prenatal testing, an abortion could be done prior to 12 weeks. It would certainly be done prior to the onset of possible sentience. Therefore, abortion in this case would not cause the fetus to suffer. (In case of a late-term abortion (less than 1% of all abortions), anesthesia could be provided so that the fetus wouldn't experience pain.)
6
The accepted science is that fetuses do not experience pain before the third trimester. So, yes, an abortion well before that time is the moral and compassionate choice for dealing with a fatal condition without treatment.
8
Like everyone else, my heart goes out to these parents. But if anything is a case for abortion, this is one. Does his wife's theological and moral objections to abortion extend to a case like this one? Trisomy 18 is diagnosable by prenatal genetic testing. Had his wife had the test and aborted in the first or second trimester, prior to the onset of sentience, no one would have suffered. It seems to me that would have been the better outcome, for everyone.
150
I am so sorry for your loss and your pain. This was such an important piece to see here. I am crying for you and your baby. I hope you find peace.
13
This woman refused amniocentisis and prenatal genetic testing. Surely she would not have allowed euthanasia. I'm afraid her morality sealed her fate. No, there was nothing she could do, and even if you could have done something, she would have not allowed you to. The family chose martyrdom and an imaginary man in the sky over the actual living being that they chose to bring into the world; helpless, in pain, suffering. They allowed that child's suffering to continue. How feckless and immoral.
Thank you for a stunning, wrenching piece of writing. Bravo.
Thank you for a stunning, wrenching piece of writing. Bravo.
129
This is an extraordinarily judgmental response. You are looking at another's choices through lenses that only allow black-and-white. Turns out, there's a lot of grey in this life. You have no idea, really, about what these people - including the mother - experienced prior to this that formed their thoughts and behavior. And the 'what if' of the disorder - 'what if' the child was, in fact, able to live a long and happy life? This is indeterminate, for trisomy 18, with an amniocentesis. This baby's prognosis wasn't understood until he was born.
I can't think of another scenario which calls for more compassion than this one. It is ignorant to judge any family which has experienced it.
I can't think of another scenario which calls for more compassion than this one. It is ignorant to judge any family which has experienced it.
3
I wonder if this is what you would have said to these childless parents. Oh - I guess you just did. It is clear that you have the good fortune to escape such a circumstance. If you had any feeling for a mother, breasts swollen with milk, who had to enter her baby's furnished room with aching arms, you might have considered a more empathetic response.
1
This was magnificent. His life, your decisions, PEROID. Anyone judging or denigrating your choices is stunningly obtuse and inhumane.
18
What is the purpose of this inflammatory piece, given that euthanasia under these circumstances is not available?
And why was this child not offered even basic palliative care, such as a small dose of morphine, to help him through his agonized last moments?
And why was this child not offered even basic palliative care, such as a small dose of morphine, to help him through his agonized last moments?
28
I should also clarify that the author's use of second-person POV made it unclear to me whether he is writing about his own experience, that of an acquaintance or stranger, or a hypothetical case for the purpose of arguing for euthanasia.
My heart goes out to the parents of this poor child.
My heart goes out to the parents of this poor child.
1
The purpose of this piece is to let you know how a parent feels about the loss of a child from a genetic malfunction Most of these malfunctions end in miscarriage. There are some that do not leaving parents with painful decisions about their infant.
The Charlie Gard case has been thoroughly covered by the news in termed of the science, the medical, the legal and the governmental facts. What we do not get is in in depth description of how Charles family feels. The author shares his private moments of grief. Hopefully this will make us understand what a parent has to go through in such a situation. You may disagree with their decision but it belongs to them.
The Charlie Gard case has been thoroughly covered by the news in termed of the science, the medical, the legal and the governmental facts. What we do not get is in in depth description of how Charles family feels. The author shares his private moments of grief. Hopefully this will make us understand what a parent has to go through in such a situation. You may disagree with their decision but it belongs to them.
5
If you read the book "Dreamland," until 25-30 years ago physician's were very reluctant to provide morphine or similar drugs to those with severe end of life cancer pain because, if you can believe it, "they might get addicted." As the author of this article suggests Sam's death may have occurred 20 years ago, the non-use of morphine may have been still part of medical culture.
3
Heartbreaking, honest, thought-provoking, beautifully written.
7
What a riveting and harrowing choice facing these parents. I have no idea how to empathize on this one. No idea at all.
For religious people, I can imagine the grief that their God would allow this. I am religious, and I know that yelling at God would be my first response.
That of course does not do any good, and I can only say, there are ethical dilemmas so horrific that one can only turn the decision over, after consulting the very best advice from physicians and clergy.
Sometimes the hardest thing of all is to let go.
For religious people, I can imagine the grief that their God would allow this. I am religious, and I know that yelling at God would be my first response.
That of course does not do any good, and I can only say, there are ethical dilemmas so horrific that one can only turn the decision over, after consulting the very best advice from physicians and clergy.
Sometimes the hardest thing of all is to let go.
24
The role of a parent is not to eliminate all pain and suffering from their child's life. Euthanasia, I believe, can only be allowed with the informed consent of the person involved, which Sam obviously did not possess. Therefore Sam's immediate future was yours to determine. Technology delivers us from many hardships but creates others. You decision was carefully considered and without ulterior motives. One cannot ask more from you.
34
One could have asked you to consider the possible consequences of your refusal to have genetic testing during your pregnancy.
4
i was recently given a "not compatible with life diagnosis." With that came a choice of termination or giving birth to a baby that wouldn't be able to breathe or live more than an hour. I was not given any other information or guidance to help us make a decision and had to turn to the internet which has some dark corners when looking for such information. There is palliative care available in some places for newborns not expected to live long to help manage their pain and some places have specific training for this. It wasn't until we transferred care 3 hours from our house that we were able to get information from actual doctors. I'm pro choice but that should include giving a parent access to all of the current information. Ultimately, I have been receiving experimental treatments and my baby now has a good chance of defying the odds.
17
It's a heartbreaking decision, and I would not venture to judge any parent for their choice.
70
As a father & grandfather my heart aches for you and your family. The most heartbreaking part of your tragedy is that it seems to have been avoidable. I cannot imagine trading away my and my family's mortal serenity over opposition to therapeutic abortion in order to be rewarded by some immortal heavenly reward. Your son Sam was never meant to be born; you, your wife, & your family need not have suffered this tragedy; you did nothing to court your everlasting anguish but you also took no action to prevent it. May whatever deity you feel inclined to believe in bring you, your wife, & your family some measure of peace & healing.
30
It's currently the standard of pediatric palliative care to offer newborns who are not expected to survive small doses of morphine or other opioids to relieve pain or shortness of breath. There is no need to kill a child, nor is there any reason to allow a dying child to struggle and suffer. My heart goes out to the parents who must live with the image of the child who died without any help for his symptoms.
527
This is certainly expected treatment here in the UK. As you can imagine with the Charlie Gard case in the news, palliative care for newborns and young babes not expected to live has been a common discussion.
1
Exactly.
3
Yes, exactly. This option would be offered to a person dying after a long life. No reason it shouldn't be offered here as well.
1
I feel for you, and I fully agree.
I'm a DNR patient and a palliative care patient. If I can be legally left to expire in a ghastly, harshly-lit hospital stinking of that foul mixture of human waste, sanitiser and bleach, then I should be able to decide the time and place of my ending and ensure it is done painlessly and gently in a calm, peaceful environment surrounded by loved ones.
My Mum is fully briefed and I have given her the necessary legal powers - but due to the law it can't be the gift of mercy. It may well be to decide to pull a plug in a horrible ICU. But I will love her the more for it.
I'm a DNR patient and a palliative care patient. If I can be legally left to expire in a ghastly, harshly-lit hospital stinking of that foul mixture of human waste, sanitiser and bleach, then I should be able to decide the time and place of my ending and ensure it is done painlessly and gently in a calm, peaceful environment surrounded by loved ones.
My Mum is fully briefed and I have given her the necessary legal powers - but due to the law it can't be the gift of mercy. It may well be to decide to pull a plug in a horrible ICU. But I will love her the more for it.
38
These are situations not to be wished on anyone. It is bad enough watching an elderly parent or close personal friend die. Our national culture puts too much of a premium on life-support at all costs--sometimes even countermanding existing advance directives.
As I understand it, only six states have death with dignity laws for adults: California, Colorado, Washington DC (I know, not a state), Oregon, Vermont and Washington ( https://www.deathwithdignity.org/learn/death-with-dignity-acts/ ). It has been agonizing just to get these in place in a few locales, and that was only focused on adult end-of-life circumstances. I shudder to think if children--such as the one described in Mr. Comstock's essy--are added into the mix of intense political and emotional arguments.
Mr. Comstock's concluding statement is harsh ("you should have killed your baby") and understandable. Only a rare licensed physicians would have the fortitude to defy both law and convention. I will not hold my breath waiting for legislative compassion. And I hope my children and grandchildren never face this choice: two doors with death behind both.
As I understand it, only six states have death with dignity laws for adults: California, Colorado, Washington DC (I know, not a state), Oregon, Vermont and Washington ( https://www.deathwithdignity.org/learn/death-with-dignity-acts/ ). It has been agonizing just to get these in place in a few locales, and that was only focused on adult end-of-life circumstances. I shudder to think if children--such as the one described in Mr. Comstock's essy--are added into the mix of intense political and emotional arguments.
Mr. Comstock's concluding statement is harsh ("you should have killed your baby") and understandable. Only a rare licensed physicians would have the fortitude to defy both law and convention. I will not hold my breath waiting for legislative compassion. And I hope my children and grandchildren never face this choice: two doors with death behind both.
15
Your story made me cry, I am so sorry for all of you, what a horrible choice to have to make. I also struggle with the fact that we are far kinder to our pets than we are to our human loved ones. Removing my father from dialysis was one of the hardest things I have ever done, but I know it was the right thing to do. I am grateful for the the support of his doctor and the hospice workers, who helped my understand that I wasn't killing my father, I was helping him have peace. Where there is no hope for quality of life, there is no life.
45
Not that anyone else's opinion does or should matter, you did the right thing. Because of love, you and your wife gave your son the most loving gift possible. Thank you.
22
As a veterinarian who has euthanized thousands of animals over a 29-year career, all I can say is that it would take enormous emotional strength for a health professional to administer euthanasia solution to critically ill newborns. Killing a living being affects you. If it doesn't, you are not right for the job.
61
Life is unfair and bad things happen to good people. You will mourn and remember Sam but life moves forward, sadly so will you.
6
I am convinced the parents always know best. There should be options, not one size/law/moral code fits all. Words like "kill," and "murder," don't apply to these circumstances of love and agonizing choices.
22
You haven't met a lot of parents, certainly not the ones that shake, maim, abuse, and molest their own children. Do they know best??
3
The notion that eugenics is evil is just plain silly. The whole culture of marriage is about human self-improvement. Many things can go wrong in the union and unfolding of DNA. Most defective fertilizations abort all by themselves, but those that can survive the womb but not the world pose the deepest emotional challenges.
7
Isn't the question perhaps: should the doctor have allowed the baby to live in those first few minutes after birth?
7
Sounds like the parents weren't given an option to not take heroic measures at birth - perhaps because no one knew about the trisomy 18 until the baby was born and intubated?
2
In an inpatient hospice unit, a week old baby with trisomy 18 arrived. He was born with microcephaly and a badly formed heart that would kill him as the baby grew because it functioned so poorly. The mother stated that she could not watch this process slowly take her son, so she would not visit him. I, along with other nurses and staff took turns holding him and speaking softly to him. He never indicated that he could hear us. He died at one month of age.
The lesson here is, never ever judge people's decisions in horrible cases like this. You might be a parent with an agonizing decision one day.
The lesson here is, never ever judge people's decisions in horrible cases like this. You might be a parent with an agonizing decision one day.
181
That's it. This is not a circumstance to make judgments from the safety of not having experienced such a horror.
I would choose the lethal injection for myself or any loved one who was suffering and dying was imminent. I believe it's the loving decision to make. Hard but necessary.
23
That sounds great, Judith -- until you realize that some people would be very happy to give Granny a lethal injection, even while she is sentient and not in pain, because they are VERY eager to get their inheritance early and not waste it on her nursing home expenses.
2
Everyone respects your decision and thank you for sharing-- you will give other families courage. Sam's life was going to be one of pain and suffering and you gave him a peaceful end in your arms.
15
Thank you for so eloquently sharing your family's heartbreak. You should feel no guilt for what transpired; it was beyond your control. I am profoundly sorry for your loss.
Some might say that Sam's passing could have been eased with some medication. That may be true, but at this very moment there is an experienced, dedicated pediatric intensive care physician in California facing murder charges for doing this exact thing because a nurse who reviewed the patient's chart felt that it was inappropriate.
Others might say that his organs might have been donated and he would therefore have passed away peacefully under general anesthesia; however, our laws prohibit this practice because of the "slippery slope" that the practice could morph into euthanizing the non-terminal for their organs. (There have been cases of parents with anencephalic babies, with zero chance of survival, denied this option of turning this tragedy into something positive to help other children.)
Well-meaning (I hope) people have made laws with no latitude for clinical judgment. There was nothing else you could have done. I wish you peace.
Some might say that Sam's passing could have been eased with some medication. That may be true, but at this very moment there is an experienced, dedicated pediatric intensive care physician in California facing murder charges for doing this exact thing because a nurse who reviewed the patient's chart felt that it was inappropriate.
Others might say that his organs might have been donated and he would therefore have passed away peacefully under general anesthesia; however, our laws prohibit this practice because of the "slippery slope" that the practice could morph into euthanizing the non-terminal for their organs. (There have been cases of parents with anencephalic babies, with zero chance of survival, denied this option of turning this tragedy into something positive to help other children.)
Well-meaning (I hope) people have made laws with no latitude for clinical judgment. There was nothing else you could have done. I wish you peace.
41
For what it's worth, this story apparently happened many years ago. Currently there is a push towards neonatal organ donation. Laws do not prohibit it. In fact I recently read the account of a man whose wife chose to carry an anencephalic baby to term in order to donate his organs. While that may seem extreme to many, in the more likely scenario of a family faced with the decision to withdraw support from a neonate, organ donation is sometimes an option. (That said, organ donation would come from infants without severe conditions such as trisomy 18, as those organs are likely to have anomalies.)
4
For what it's worth, the story isn't written in a way to make it absolutely clear that it wasn't made up and written simply to make a point. When I was done reading it I felt I had been manipulated by the author .
2
Losing a child is brutal regardless of the circumstances. It should not be for any one but the parents to decide what would have been best. But in a real world of limited resources, there are constraints on how much we can spend to delay the inevitable.
14
I have toiled in the fields of blighted babies as a pediatrician. If I learned nothing else I have learned
1. Do what the parents want.
2. If the parents don't know what they want, give them time to make a decision.
3. Support them 110% in that decision, if at all humanly possible.
4. Parents need and want leadership in times of ethical peril. We don't give it anymore. We're lunch ladies offering beets or burgers to families in the greatest crisis of their young lives.
5. Sometimes the best guidance is a question: if our roles were reversed, and I was in your shoes, what would you say to counsel me?
6. Sometimes, parents want to be led to letting a baby go; they just feel horrible coming up with the idea.
7. It's good to know black and white, as life is lived in shades of gray.
1. Do what the parents want.
2. If the parents don't know what they want, give them time to make a decision.
3. Support them 110% in that decision, if at all humanly possible.
4. Parents need and want leadership in times of ethical peril. We don't give it anymore. We're lunch ladies offering beets or burgers to families in the greatest crisis of their young lives.
5. Sometimes the best guidance is a question: if our roles were reversed, and I was in your shoes, what would you say to counsel me?
6. Sometimes, parents want to be led to letting a baby go; they just feel horrible coming up with the idea.
7. It's good to know black and white, as life is lived in shades of gray.
251
This is perhaps the best comment I've ever read. Thank you.
3
Euthanasia requires the will of the patient and the advice of a doctor. It is covered by many stern laws. I live in a country that has made it legal. It is complex. Sam was not in a position to request it. Letting him die was the only option.
17
Parents have the legal right to make decisions on behalf of their children who cannot do so for themselves.
21
This is one of the saddest and profound pieces I have read. For those who giving advice and admonishment, be grateful for your healthy children. My heart weeps for this family and others who are in this house of sorrow.
133
The clergy has informed us that human life is precious. (Whatever that means)
Therefore people must be forced to endure their suffering for as long as they can be kept breathing.
Dogs are luckier. Their lives are evidently not so precious. Thus it is permitted to show them mercy.
Therefore people must be forced to endure their suffering for as long as they can be kept breathing.
Dogs are luckier. Their lives are evidently not so precious. Thus it is permitted to show them mercy.
472
The clergy and the doctors make money while there is life...any kind of "life"
5
Religion is meant to help people deal with things that humanity as a whole doesn't understand. Humanity through its medical expertise understands a lot about such cases, and certainly infinitely more than religion. The choice should be left to the parents, and the factual advice to the experts. Religion, as a source of substantive argument for or against a specific option, has no place in these decisions.
4
@edward k. Trust me Edward, we doctors would much prefer getting home half an hour earlier than getting that $14 from Medicaid. And I personally have never received a bill for clergy services.
1
This is why my wife and I have not had children and never will. The risks of this horror are too great and we could not bear it.
9
The risk of this type of malady is exceedingly small. You and your wife are far more likely to be killed or disabled in a car crash. Is it safe to assume you both drive?
13
Parenthood is not for everyone, but your reasoning for not taking on the responsibility seems unique. It must be difficult to leave your home given the risks of life.
8
That's great, tell me my wife and I are wrong to make our own life choices. Please send us a manual of correct choices, so we can be just like you.
4
Not for everyone. Even if you feel the child was better off somehow you never ever get over the death of a child. The pain stays with you.
Yes most probably you can get to at least he/she won't suffer anymore. Their life would have been stunted and who would care for them when you are gone. But you never ever get over the pain of losing a child.
Little Sam was most likely going to have a poor quality of life. He may have only smiled once or twice. And in your heart of heart you know he is suffering and his death is a blessing and not a curse. But you never ever get over the loss of a child.
Yes most probably you can get to at least he/she won't suffer anymore. Their life would have been stunted and who would care for them when you are gone. But you never ever get over the pain of losing a child.
Little Sam was most likely going to have a poor quality of life. He may have only smiled once or twice. And in your heart of heart you know he is suffering and his death is a blessing and not a curse. But you never ever get over the loss of a child.
24
The thing that is really heartbreaking is that they could have done genetic testing before birth, but didn't for 'reasons.'
50
Being unwilling to abort a pregnancy under any circumstances is a 100% valid reason for declining prenatal genetic testing. You don't do a test if you are not going to do anything with the results.
16
That testing can also help to plan for dealing with any abnormalities that might arise. Refusing it means being confronted with problems without awareness or resources, for "reasons".
And as for "reasons," being against abortion "on theological and moral grounds" means, in the first cast, that your religion has led you into this situation of unexpected and unprepared-for tragedy by forcing you to close your mind; in the second case, it merely means you're wrong, and have done the same thing to yourself.
Anyone is free to choose not to have an abortion in any given case. Refusing to accept that you have the option (or, worse, trying to take that option from others) merely means you have fewer tools to deal with what might come; refusing even to know your condition in pregnancy because that knowledge *could be* a reason for abortion is to choose ignorance to force your own hand.
And as for "reasons," being against abortion "on theological and moral grounds" means, in the first cast, that your religion has led you into this situation of unexpected and unprepared-for tragedy by forcing you to close your mind; in the second case, it merely means you're wrong, and have done the same thing to yourself.
Anyone is free to choose not to have an abortion in any given case. Refusing to accept that you have the option (or, worse, trying to take that option from others) merely means you have fewer tools to deal with what might come; refusing even to know your condition in pregnancy because that knowledge *could be* a reason for abortion is to choose ignorance to force your own hand.
24
"reasons" being code for "brainwashed by fundamentalist religious dogma that is antithetical to science, logic, and Socratic thought."
3
For couples who don't want an amino, in-depth ultrasounds are a non-evasive way to detect abnormalities in a fetus. This was my situation after my obstetrician suspected retardation in my baby. Like the author's wife, I declined an amino because of its tiny but real chance of causing a miscarriage. No matter what, my husband and I were bringing this baby to term. But we agreed to - no, welcomed - the sophisticated ultrasound that was able to detect physical differences associated with Down's syndrome, because it helped us look ahead and prepare, and also because the geneticist was able to narrow the odds (to 30%) based on the physical results. In the end, my child was born and did not have Down's syndrome.
24
I have also shared in the agonizing situation you detail in dealing with a child with profound genetic abnormalities. All available outcomes are either bad or worse.
The only amendment I would offer you is about amniocentesis. While it allows consideration of abortion, it does not require it. For a risk of about 1% to a pregnancy, you can learn what you might be facing in about 5 months' time. Having time to absorb, understand and deal with the realities you have been given is a great gift. You can talk to family, religious counselors and parents of affected children with the same problem to gain perspective and make preparations for and peace with the decisions to come. Trying to do all these things telescoped into just a few days in the harsh lights of a neonatal ICU is cruel and taxing beyond measure.
Your heartfelt call for the option of infant euthanasia in hopeless situations pulls profoundly on my memories. If he could talk to you, Sam would tell you he understands.
The only amendment I would offer you is about amniocentesis. While it allows consideration of abortion, it does not require it. For a risk of about 1% to a pregnancy, you can learn what you might be facing in about 5 months' time. Having time to absorb, understand and deal with the realities you have been given is a great gift. You can talk to family, religious counselors and parents of affected children with the same problem to gain perspective and make preparations for and peace with the decisions to come. Trying to do all these things telescoped into just a few days in the harsh lights of a neonatal ICU is cruel and taxing beyond measure.
Your heartfelt call for the option of infant euthanasia in hopeless situations pulls profoundly on my memories. If he could talk to you, Sam would tell you he understands.
328
Religious counselors who claim that it is God's will that the parents be challenged in this way are not helpful.
291
To me, invoking "God's will" as an explanation is a cop out and just another way to say there is no guidance here for you from us in this matter.
Another clerical favorite is trying to explain why an infant's life is taken in an airplane crash if there is a just God by claiming the child was taken "in a state of grace", avoiding all that latent opportunity for earthly sin. Piffle!
Another clerical favorite is trying to explain why an infant's life is taken in an airplane crash if there is a just God by claiming the child was taken "in a state of grace", avoiding all that latent opportunity for earthly sin. Piffle!
41
" Religious counselors who claim that it is God's will...." must have a very strange notion of any God. To me these children prove there is no god.
23
>
"One formula to establish the imbalance at issue has been tendered by the South African philosopher of ethics David Benatar. In his Better Never to Have Been: The Harm of Coming into Existence (2006), Benatar cogently propounds that, because some amount of suffering is inevitable for all who are born, while the absence of happiness does not deprive those who would have been born but were not, the scales are tipped in favor of not bearing children.
Therefore, propagators violate any conceivable system of morality and ethics because they are guilty of doing harm. To Benatar, the extent of the harm that always occurs matters not. Once harm has been ensured by the begetting of a bundle of joy, a line has been crossed from moral-ethical behavior to immoral-unethical behavior. This violation of morality and ethics holds for Benatar in all instances of childbirth.
People like Benatar who argue that the world’s “ideal population size is zero” are written off as being unhealthy of mind. Further accentuating this presumed unhealthiness is Benatar’s argument that giving birth is not only harmful but should be seen as so egregiously harmful that there is no happiness that can counterbalance it. As harms go in this world, there are none worse than the harm that entails all others."
Ligotti, from The Conspiracy Against The Human Race
"One formula to establish the imbalance at issue has been tendered by the South African philosopher of ethics David Benatar. In his Better Never to Have Been: The Harm of Coming into Existence (2006), Benatar cogently propounds that, because some amount of suffering is inevitable for all who are born, while the absence of happiness does not deprive those who would have been born but were not, the scales are tipped in favor of not bearing children.
Therefore, propagators violate any conceivable system of morality and ethics because they are guilty of doing harm. To Benatar, the extent of the harm that always occurs matters not. Once harm has been ensured by the begetting of a bundle of joy, a line has been crossed from moral-ethical behavior to immoral-unethical behavior. This violation of morality and ethics holds for Benatar in all instances of childbirth.
People like Benatar who argue that the world’s “ideal population size is zero” are written off as being unhealthy of mind. Further accentuating this presumed unhealthiness is Benatar’s argument that giving birth is not only harmful but should be seen as so egregiously harmful that there is no happiness that can counterbalance it. As harms go in this world, there are none worse than the harm that entails all others."
Ligotti, from The Conspiracy Against The Human Race
7
But do "Good" and "Evil" even exist in a material universe? Aren't they just figments of our imagination?
1
@Swift
Test it out. Shoot yourself in the foot; let me know if it's just in your imagination, Solipsism besides. The outside world is there, you just see a tiny fraction of it, including the harm you cause. See Thomas Metzinger's, The Ego Tunnel.
On a side note since you appear to be a fan of J Swift, check out Norman O. Brown's great analysis of Swift in his book Life Against Death.
Test it out. Shoot yourself in the foot; let me know if it's just in your imagination, Solipsism besides. The outside world is there, you just see a tiny fraction of it, including the harm you cause. See Thomas Metzinger's, The Ego Tunnel.
On a side note since you appear to be a fan of J Swift, check out Norman O. Brown's great analysis of Swift in his book Life Against Death.
Also Swift,
No, good and evil, on a reductive & material basis, are not material in the universe. Good and evil are subjective values that emerge out of the material world due to human consciousness, the "parent of all horrors"and the greatest organ which maintains some of the most impressive emergent properties in the universe
These values can change too; had Hitler not been such a militaristic strategical dolt, our values would surely be different
The philosophy of emergence will be an essential part of the answer to the answer of Everything i.e., the finality of science
That said, Philosophy's worker bees, the scientists, and their relentless quest for the answer to Everything, will shake the foundation of humanity
Philosophy "proper" has only two potential end points, therapeutic suicide or nihilism, the answer to Everything annihilates mysticism, positive thinking
"The most merciful thing in the world, I think, is the inability of the human mind to correlate all its contents. We live on a placid island of ignorance in the midst of black seas of infinity, and it was not meant that we should voyage far. The sciences, each straining in its own direction, have hitherto harmed us little; but some day the piecing together of dissociated knowledge will open up such terrifying vistas of reality, and of our frightful position therein, that we shall either go mad from the revelation or flee from the deadly light into the peace and safety of a new dark age.”
H.P. Lovecraft
No, good and evil, on a reductive & material basis, are not material in the universe. Good and evil are subjective values that emerge out of the material world due to human consciousness, the "parent of all horrors"and the greatest organ which maintains some of the most impressive emergent properties in the universe
These values can change too; had Hitler not been such a militaristic strategical dolt, our values would surely be different
The philosophy of emergence will be an essential part of the answer to the answer of Everything i.e., the finality of science
That said, Philosophy's worker bees, the scientists, and their relentless quest for the answer to Everything, will shake the foundation of humanity
Philosophy "proper" has only two potential end points, therapeutic suicide or nihilism, the answer to Everything annihilates mysticism, positive thinking
"The most merciful thing in the world, I think, is the inability of the human mind to correlate all its contents. We live on a placid island of ignorance in the midst of black seas of infinity, and it was not meant that we should voyage far. The sciences, each straining in its own direction, have hitherto harmed us little; but some day the piecing together of dissociated knowledge will open up such terrifying vistas of reality, and of our frightful position therein, that we shall either go mad from the revelation or flee from the deadly light into the peace and safety of a new dark age.”
H.P. Lovecraft
2
My condolences. We had to let go of my father when a stroke left him brain dead. We knew he felt no pain. I hope Sam was given morphine in the end, because respiratory distress is painful. Best wishes for the family.
15
I was surprised little Sam was not given enough morphine to render him unconscious throughout the dying process. Most elderly dying patients, in respiratory distress, are given morphine.
13
That was heartbreaking. I am so sorry for you and anyone who faces such a terrible tragedy.
Peace to your little boy, Sam, and your whole family.
Peace to your little boy, Sam, and your whole family.
23
My heart goes out to you...
5
Sir Francis Drake, circumnavigator, would today be carefully watched, relegated to minor position, frustrated, possibly even be killed as a baby if it was known who he would become, that possibly even he himself would ask why was he not just killed as a child?
Our modern world by overpopulation, medicine, technology, environmental destruction is becoming a conformist nightmare. The right wing in the U.S. promotes religion, denies science. The left wing for all science promotion seems to promote a sensitivity and weakness of intellect which borders on the pathological, humans so sensitive they need safe spaces, to be protected, need to be shielded from this or that idea.
Around the world, flying from the U.S. east into the sun, whether you want to speak of Israel turning into an Orthodox Jewish nightmare to authoritarianism in Russia to conformity in China and back to the U.S. again society appears to be closing in on people. We are told technology will drive our cars, take our jobs, that AI will do our thinking for us. It is not implausible a Sir Francis Drake or a Leonardo--any number of outstanding, "problematic", humans--will at least be frustrated in action and possibly wiped out at birth.
But what we need most are exactly such humans. We need a Sir Francis Drake and team to colonize Mars. Magellan/d'Elcano. We seem to be creating a hellish world where so many will wish they had just been killed as babies rather than live in an overpopulated conformist nightmare.
Our modern world by overpopulation, medicine, technology, environmental destruction is becoming a conformist nightmare. The right wing in the U.S. promotes religion, denies science. The left wing for all science promotion seems to promote a sensitivity and weakness of intellect which borders on the pathological, humans so sensitive they need safe spaces, to be protected, need to be shielded from this or that idea.
Around the world, flying from the U.S. east into the sun, whether you want to speak of Israel turning into an Orthodox Jewish nightmare to authoritarianism in Russia to conformity in China and back to the U.S. again society appears to be closing in on people. We are told technology will drive our cars, take our jobs, that AI will do our thinking for us. It is not implausible a Sir Francis Drake or a Leonardo--any number of outstanding, "problematic", humans--will at least be frustrated in action and possibly wiped out at birth.
But what we need most are exactly such humans. We need a Sir Francis Drake and team to colonize Mars. Magellan/d'Elcano. We seem to be creating a hellish world where so many will wish they had just been killed as babies rather than live in an overpopulated conformist nightmare.
1
People who wish they had been killed as infants or never born are suffering from a disease called depression, which needs treatment. Recovery can be slow but eventually will happen.
OTOH I am completely in favor of either 0 population growth or minus population growth -- GNP be damned.;-D
OTOH I am completely in favor of either 0 population growth or minus population growth -- GNP be damned.;-D
10
"overpopulated conformist nightmare"
Seriously? What are you going on about? Most of us do not see it as you do.
Why would "Sir Francis Drake, circumnavigator, ... today be carefully watched, relegated to minor position, frustrated, possibly even be killed as a baby if it was known who he would become,...."?
Seriously? What are you going on about? Most of us do not see it as you do.
Why would "Sir Francis Drake, circumnavigator, ... today be carefully watched, relegated to minor position, frustrated, possibly even be killed as a baby if it was known who he would become,...."?
4
Gary Comstock wrote: '... the repugnant has become reasonable. The unthinkable has become the right, the good. Painlessly. Quickly. With the assistance of a trained physician.
You should have killed your baby.'
No, sir! You are so very wrong! To kill is to murder. It is to wantonly and
with premeditation taking the life of another. It is called homicide. It is illegal and should always remain in that category. It is not your or my right to take another's life, and physicians should never be allowed to be judge, jury and executioner.
To kill one person is to kill all people. To save one life is to save the future.
You and others go down a very steep and slippery slope to audaciously accept that killing babies should be allowed. I wonder if you would make such a suggestion if you were the father of this child .... YOUR son.
I am a mother who spent 4 long months watching her child die ... as helpless as the physicians who tried so desperately so save her. I can guarantee you that my daughter never asked me to kill her now!
No! One should not be allowed to five lethal doses to a dying child-or to a dying adult! We may NOT kill our babies or our parents or our neighbors!
You should have killed your baby.'
No, sir! You are so very wrong! To kill is to murder. It is to wantonly and
with premeditation taking the life of another. It is called homicide. It is illegal and should always remain in that category. It is not your or my right to take another's life, and physicians should never be allowed to be judge, jury and executioner.
To kill one person is to kill all people. To save one life is to save the future.
You and others go down a very steep and slippery slope to audaciously accept that killing babies should be allowed. I wonder if you would make such a suggestion if you were the father of this child .... YOUR son.
I am a mother who spent 4 long months watching her child die ... as helpless as the physicians who tried so desperately so save her. I can guarantee you that my daughter never asked me to kill her now!
No! One should not be allowed to five lethal doses to a dying child-or to a dying adult! We may NOT kill our babies or our parents or our neighbors!
8
You have obviously missed the point that the "you" in this essay is the author whose agonizing decision should not be condemned because you acted differently.
42
?No! One should not be allowed to five lethal doses to a dying child-or to a dying adult! We may NOT kill our babies or our parents or our neighbors!"
I won't deal with the question of babies, but I will ask on behalf of all adults, what if it is--or would have been were they still able to express themselves--the desire- of our parents or our neighbors or ourselves to end things when there is no hope of recovery? Death is inevitable for all of us, and sometimes we need to be able to control that "when" is "now" either for ourselves or on behalf of someone we love. Some of us believe that you are advocating torture in your frantic denial of what others might choose to be best.
I won't deal with the question of babies, but I will ask on behalf of all adults, what if it is--or would have been were they still able to express themselves--the desire- of our parents or our neighbors or ourselves to end things when there is no hope of recovery? Death is inevitable for all of us, and sometimes we need to be able to control that "when" is "now" either for ourselves or on behalf of someone we love. Some of us believe that you are advocating torture in your frantic denial of what others might choose to be best.
8
Please explain why it was more moral to let him die? The intent was the same- to ensure he was dead.
Your response is simply hyperbole that is not grounded in logic. It's emotional hysteria.
Your response is simply hyperbole that is not grounded in logic. It's emotional hysteria.
5
Thank you for telling us your story. My heart goes out to you and your family. I have a very brave friend who came to the same decision that you did and I love her so. I am so glad that you had a supportive circle of loving family an friends to support you. I would certainly hope that with support of a good palliative care team that is more available these days, that your baby's death could have been more peaceful and less painful. Your telling of your family's loss will help a family somewhere today. Thank you.
73
I work in an extremely high risk unit that routinely cares for children with Trisomy 18 and other diseases. The pain and suffering of the baby and the family is paramount in our decision making. Decisions made in the days immediately after birth will have a lifetime of repercussions for all - many of which are not even imaginable. Sometimes the bravest decision is the one chosen by the author and his wife. They were lucky to have the mental capacity and fortitude to come to that conclusion. Just because we can preserve life at all costs, emotionally and financially, does not mean we should.
430
You are absolutely right, David V. These parents made the only right decision there was in this instance. I know there is always the 'what if' or something along the lines of what we should have done, or what we didn't do right.
This father's pain seems to come from a place that concerns the issue of his son being in pain. He wasn't. This baby was terribly unfortunate to have Trisomy 18, but was unable to feel pain precisely because he had this issue. These parents are to be commended, and told not to worry about possible pain their dear son felt. He did not feel it, as awful as it was to watch him fade away.
Many people do not make this humane, correct decision. These people condemn their babies to months or years of true pain and negative quality of life. I see this in my work.
Gary, you and your wife made the right decision, and there is no option for hastening that leaving. Be in peace that you, at least, made the right decision and the right way to let your beloved son go.
This father's pain seems to come from a place that concerns the issue of his son being in pain. He wasn't. This baby was terribly unfortunate to have Trisomy 18, but was unable to feel pain precisely because he had this issue. These parents are to be commended, and told not to worry about possible pain their dear son felt. He did not feel it, as awful as it was to watch him fade away.
Many people do not make this humane, correct decision. These people condemn their babies to months or years of true pain and negative quality of life. I see this in my work.
Gary, you and your wife made the right decision, and there is no option for hastening that leaving. Be in peace that you, at least, made the right decision and the right way to let your beloved son go.
2
I cried freely to honor your grief. I struggled with a similar decision with my first wife. It is never easy. This was a powerfully written essay. I hope you find peace in your heart.
142
What a painful story! I will not speak about this mother's choice, but faced with the choice to do amnio or not I would do it, not in order to abort, but in order to prepare. I would want to know if my child would have Down's Syndrome or some other condition. I would want time to prepare, to inform myself etc.
While working in a newborn ICU a number of years ago, I cared for one child with trisomy-18. My understanding at the time was that most of them died before of their 1st birthdays mainly of pneumonia (because they could not handle their own secretions).
The knowledge of the possibility of a longer and even, for some, possibly normal or nearly so, life makes the choices even more agonizing. Still, I find the idea of euthanizing an infant difficult. I am not totally opposed, but it is a bit uncomfortable. Questions arise about where we draw the line, i.e., how much disability must be anticipated? Who gets to decide? Is there a time frame after birth when such an option would be on the table? Certainly some kind of medical ethics panel would need to be involved along with parents and doctors. We are, after all, talking about actively taking a life of a person who cannot speak for him/herself.
While working in a newborn ICU a number of years ago, I cared for one child with trisomy-18. My understanding at the time was that most of them died before of their 1st birthdays mainly of pneumonia (because they could not handle their own secretions).
The knowledge of the possibility of a longer and even, for some, possibly normal or nearly so, life makes the choices even more agonizing. Still, I find the idea of euthanizing an infant difficult. I am not totally opposed, but it is a bit uncomfortable. Questions arise about where we draw the line, i.e., how much disability must be anticipated? Who gets to decide? Is there a time frame after birth when such an option would be on the table? Certainly some kind of medical ethics panel would need to be involved along with parents and doctors. We are, after all, talking about actively taking a life of a person who cannot speak for him/herself.
53
Yes, exactly. I would never abort. But knowledge of what the possibilities are would allow more time for thinking before the decisions have to be made, and avoid the shock of giving birth to the baby you confidently expect to take home from the hospital, and finding that he is dying. I know there's no way to avoid the deep and terrible grief. Beginning the mourning process during pregnancy has to be completely awful. But I think it would be preferable to finding out at the time of birth, and having to make on-the-spot decisions with no time to research and come to terms.
21
I must say I struggle -- struggle -- to understand the logic behind opposition to abortion even in such extreme cases. In your hypothetical case, for instance, is it really, truly the moral, loving, Christian thing to do to knowingly allow a child to needlessly suffer, knowing all along that he would suffer and die? Why not prevent his suffering in the first place? Children are not Christ. They need not suffer to prove some theological point -- yours or mine.
47
@Laura and Alexis- There was an article--forget where I saw it--by a woman who received the information that she was carrying a baby with a condition that would not allow the baby to live much past birth, if that. She wrote about the agony of having to carry to term a child that she already knew would not survive. She couldn't do it and chose an abortion. For some people, being suddenly faced with the reality of a child with a terrible condition means that it must be dealt with then, right then. I really believe that it must be up to the individual and it is not for someone else to second guess the decision, whichever way it goes, that is made by those most directly affected.
6
Your brother was right when he called your decision courageous, and it was courageous too to write this important and unforgettable piece. How fortunate that you seemed to have the unanimous support of family and the hospital staff. Thank you for providing such a thorough account of such a private and painful experience. There is so much to consider and learn from here.
341
"Forget the statistics...We would like to know what our Sam's chances are..."
If you want to know "chances", then the only thing you can rely on, rationally, are the statistics. Anything else is just emotions and faith, neither of which can give you the knowledge of what to do.
I am sorry for your loss. In a world of 7,000,000,000 people, some fraction will be born with an inescapable terminal condition. Because the Truth is: In an infinite universe, everything does happen.
If you want to know "chances", then the only thing you can rely on, rationally, are the statistics. Anything else is just emotions and faith, neither of which can give you the knowledge of what to do.
I am sorry for your loss. In a world of 7,000,000,000 people, some fraction will be born with an inescapable terminal condition. Because the Truth is: In an infinite universe, everything does happen.
75
In a fractal universe, many paths are simply inaccessible.
2
Sam's chances and "statistics" may not inform each other at all. If Bill Gates and I share a table, the average net worth, statistically, of everyone at our table is in the tens of billions. Once he leaves, however, my "chances" of buying a yacht are pretty slim.
5
Cripes, this is cold.
2
This is a beautifully written story of family bonds and parental love. Thank you for sharing Sam's story in a way that increases awareness about the heartbreak and decision-making that can occur in life. Your strength is admirable.
141
Prenatal diagnosis of conditions such as trisomy 18 allows a family to make decisions about the type of care their infant will receive upon delivery. One family might choose all life saving efforts while another may choose palliative/comfort measures. Amniocentesis is required for definitive diagnosis of aneuploidy; however, the combination of ultrasound abnormalities typical of trisomy 18 and abnormal cell-free fetal DNA ( from the mothers blood) consistent with trisomy 18 allow a high index of suspicion, so at least a parent can be counseled about care decisions that might arise at delivery. Prenatal diagnosis can provide important information with regard to timing and place of delivery ( tertiary/NICU ), avoiding middle of the night emergent transport of a critically ill infant, keeping the mother and infant at same facility, NICU staff who have met and talked with the family about their expectations for treatment, etc. Prenatal diagnosis aids in decisions about pregnancy termination (abortion) but also plays an important role in managing an ongoing pregnancy.
215
I can understand not wanting amnio, but it's very common to have one or several advanced ultrasound scans done and the microcephaly, underdeveloped organs, etc would gave been pretty well noted.
I don't understand how the baby's condition could have been a complete surprise for the writer.
I don't understand how the baby's condition could have been a complete surprise for the writer.
8
Absolutely- the moralizing, or perhaps simplicity and ignorance, of his wife's decision to not undergo amniocentesis and see it simply as a means to possible termination speak to a more generally moralizing and judgmental worldview that, as this tragedy could have taught her, leads to more suffering for everyone and an inability to see and understand the nuances of life that are vital to having a kind and sympathetic nature.
Ann is wise, and I hope you can learn from her.
Ann is wise, and I hope you can learn from her.
8
Margo - The author states that this happened "years" ago. Medical practice changes, it was not always the case that people had one or several advanced scans. (And even now, the unexpected still can appear after the birth.)
jz - Where was the moralizing? The author stated that his wife would not want to have an abortion regardless of the situation. He did not say his wife said you, or anyone else, couldn't have one.
jz - Where was the moralizing? The author stated that his wife would not want to have an abortion regardless of the situation. He did not say his wife said you, or anyone else, couldn't have one.
5
My late brother-in-law was a neurosurgeon and he told me there is a distinct difference between experiencing pain and suffering. He had a few patients with particular types of brain injury who would state they feel pain, but it did not bother them. They did not suffer from the pain. So in the scenario described in this essay, one can not say that a newborn infant has the higher brain functions that would mean it suffers a "tortured death" during the bodies efforts to live in the face of hypoxia and death due to withdrawal of life support. One can say that the witness suffers the emotional pain of observing the terminal events. The more mature dying patient presents a different problem, hence the "Death with Dignity" movement.
49
I couldn't agree more. As I explained to many families, respiratory noises are simply like snoring in most cases. It bothers you; it does not bother the person who is snoring.
I am saddened to hear of your tragedy.
69
As a nurse practitioner in palliative care, I wish that you and your family had access to the support of a palliative care team, so that the last moments with your son were ones of peace as he died, rather than ones of struggle. In these situations, palliative care services work with teams to shift the focus of care to comfort and to ensure that it drives subsequent management, particularly in the very last moments of life. I don't know if it would have changed your perspective about the optimal means by which his child died, but the struggle that he experienced was not a requisite part of the process.