We all love babies. I love babies, Trump loves babies, I get it. But we have no business telling a woman that she has to grow her fetus into a baby, and we have no business as fellow humans forcing parents to watch their dying baby die more slowly.
7
Dreadful. These young parents should have accepted the consequences of the baby's suffering many months ago and ended it. I suspect their doctors did not convey this properly and this, combined with a rabid social media looking for a "cause", we are all witness to the baby's painful outcome.
Imagine how many other babies (dozens, hundreds) might have benefited from even modest amounts of hospital care while this baby suffered needlessly and without benefit as round-the-clock care and facilities were provided that were denied to other newborns as this case moved for many months through the justice system. Shameful.
When will people stop trying to "revive" those with severe pain/suffering/limitations that make them unable to lead full lives? We must develop our skills in thoughtful, ethical decision-making that include end-of-life as a perfectly reasonable course (along with all other serious courses of action). Imagine a world where people could say they've had enough-and be treated with dignity as they leave this world. We are barbarians in our current inability to support clear and thoughtful end-of-life. The brits are far better than we but this chapter is a sad one and should be a stark reminder we are still lagging badly in practical and much needed end-of-life understanding and practice.
Imagine how many other babies (dozens, hundreds) might have benefited from even modest amounts of hospital care while this baby suffered needlessly and without benefit as round-the-clock care and facilities were provided that were denied to other newborns as this case moved for many months through the justice system. Shameful.
When will people stop trying to "revive" those with severe pain/suffering/limitations that make them unable to lead full lives? We must develop our skills in thoughtful, ethical decision-making that include end-of-life as a perfectly reasonable course (along with all other serious courses of action). Imagine a world where people could say they've had enough-and be treated with dignity as they leave this world. We are barbarians in our current inability to support clear and thoughtful end-of-life. The brits are far better than we but this chapter is a sad one and should be a stark reminder we are still lagging badly in practical and much needed end-of-life understanding and practice.
13
Maybe if all the working class, middle class, old people, sick people, and poor people became British citizens, Mr Trump and the Republican Party would pay attention to their needs for medical care as well.
11
Trump wants to extend heroic efforts to save one child, while he schemes to take away healthcare from 23 to 28 million American citizens. Illogical!
30
Just more grandstanding by a GOP politician to appeal to the religious right, like Jeb and George Bush did in the Terri Schiavo case 12 years ago. Let the child go and be at peace.
14
This reminds me of Terry Schivo when W Bush and the Evangelical Right decided to trump the wishes of her husband to let her go and brought the full force of the "law" and the dictates of "god" to decide her fate.
The agony that they put her husband through remains unforgivable.
Trump and the Pope have made this stage of young Charlie's life a side-show.
Perhaps they need "no evidence", but parents do.
These parents have been offered the full evidence on Charlie's condition.
I can understand why they would reject it for it left no hope, and parents always hope. I did when my son fought lymphoma for two years. His last words were "I can't breathe", and then he did no more.
My definition of living is "breathing". My son no longer does. He is post-breathing. Someday, soon, Charlie will enter that stage no matter what his parents, his doctors, the Pope or Trump think or wish, and then the parents will enter the "post-breathing" stage of Charlie's life.
That stage, for the parents, will never end. That's just a fact, one that every grieving parent will tell these parents.
All you can do is just try to step with dignity and grace into that new stage.
My thoughts are with you.
The agony that they put her husband through remains unforgivable.
Trump and the Pope have made this stage of young Charlie's life a side-show.
Perhaps they need "no evidence", but parents do.
These parents have been offered the full evidence on Charlie's condition.
I can understand why they would reject it for it left no hope, and parents always hope. I did when my son fought lymphoma for two years. His last words were "I can't breathe", and then he did no more.
My definition of living is "breathing". My son no longer does. He is post-breathing. Someday, soon, Charlie will enter that stage no matter what his parents, his doctors, the Pope or Trump think or wish, and then the parents will enter the "post-breathing" stage of Charlie's life.
That stage, for the parents, will never end. That's just a fact, one that every grieving parent will tell these parents.
All you can do is just try to step with dignity and grace into that new stage.
My thoughts are with you.
22
Very sad day when these two men have to speak about a life that is not their's to love. This child will be in a good place after death, most likely a better, more safe, less filled with ego's of people who feel the need to speak.. when they could remain quiet, and calm. I can't stand this world we live in anymore.
22
Finally a balance article on this difficult subject. Kudos to the NYT for reporting in this fashion. It is amazing that not one single publication in the UK has reported on this case in such a fashion. Even the Guardian, on quick scanning of past articles, has sensationalist headings on the subject focusing the conflict between health care professionals, legal professionals, and the family. None actually focus on the agonising features of the case for all parties and the factual lack of treatment available.
15
I agree with Trump and this is why I take issue with liberals in general.
What audacity must someone have to tell you that you must not pursue life saving treatment for your child?
Put yourself in these parents' position. Some doctors and the courts want to let your child die, and yet you have the means to pursue additional treatment, have carefully considered your child's situation and want to. It's mind boggling.
Let's be clear. You are responsible for your children. Not society, not the government, not doctors nor a judge. These other entities will never love or care for a child as a parent should.
What audacity must someone have to tell you that you must not pursue life saving treatment for your child?
Put yourself in these parents' position. Some doctors and the courts want to let your child die, and yet you have the means to pursue additional treatment, have carefully considered your child's situation and want to. It's mind boggling.
Let's be clear. You are responsible for your children. Not society, not the government, not doctors nor a judge. These other entities will never love or care for a child as a parent should.
4
Do not these "entities" you allude to also include the Pope and Trump?
6
Many people on here blaming the Drs or the Hospital or the NHS - or they are supporting the parents in continuing to extend the life of this helpless, dying infant. Not as many people on here taking the child's viewpoint as someone who needs to be let go in peace & not have to struggle in vain & in pain with daily seizures, deafness, brain damage & severe, progressive weakness. If we had any pet suffering in this condition, we would act with compassion & empathy - & the answer would be clear. The parents are not being rational & Trump did not help by stealing the show for himself once again.
18
What will it do to this child, in his current state, to be shuttled about anywhere? It would be a nightmare of sorrow if this poor infant couldn't tolerate being moved anywhere and either died or suffered more because someone wished him moved. The parents should be the only ones to decide to move him or not, since Charlie cannot speak for himself and they will bear the consequences of decisions long years in the future
4
Those two need to shut the .... up. It's none of their business, and they should be ashamed for giving false hope and stealing headlines.
23
Thank you Mr. Pope, Mr. "you're fired" Trump, for the gladhanding and offering of all kinds of facetious support (although the pope is probably more sincere in his offerings).
9
As Clair Fenton-Glenn, the University of Cambridge legal scholar clearly and compassionately stated, "This is prolonging the agony of a devastating situation". While I would never presume to comprehend the depth of such agony, I do believe that genuine love will eventually allow the parents to let this suffering baby go. My family had to make a similar decision about our mother, and although it was heart-wrenching at the time, in the final analysis, we knew we made the correct choice. I hope Charlie's parents will soon do the same.
25
politicians and remote religious figures should stay out of personal family decisions unless they are consulted. Remember when Jeb Bush and the religious right interjected themselves into a case of a terminally ill woman whose husband wanted to remove her feeding tube?
26
As Henry VIII would have told the Pope, mind your own business unless the Vatican is willing to provide the life long funding to support the child and parents! Trump's hypocrisy of ripping away healthcare from millions of Americans and then his "fake" sympathy for this child, how disgusting, but typical of his behavior of seeking the limelight of self promotion. Another Terri Schiavo case, are the Republicans going rush back to Congress to vote? For Republicans, life is sacred for 9 months, then after that, forget it! This is a terrible experience for these parents and "show boating" by the Pope and Trump only makes it worse!
39
The Vatican pediatric hospital has offered to provide palliative care for Charlie until he dies a natural death. It has not offered the experimental therapy. It simply says we won't remove him from the support machinery.
5
The Vatican pediatric hospital has offered palliative care until Charlie's natural death. I assume that means for however long he lives. The doctors at the pediatric hospital indicated that there was no treatment for his genetic defect.
7
With family members and pets in dire illness, I have had to ask myself whether the hope of keeping them going is more for me, or is it a benefit for the one who is ill? Is the wish to do everything possible actually going to help the loved one? Or is it a kindness to let the suffering stop? However you answer the question, there will be doubts. The doctors commenting on this case appear to be saying there is already serious brain damage. If I had to make the choice, that opinion would be very significant to me.
14
Extraordinary measures only prolong suffering for a dying person. Providing comfort is what's needed at the last.
It's difficult to accept death. Especially the death of a baby or a child. But death comes to us all. And we need to accept that. Right now it's the acceptance of death, the acceptance of losing a child, with along the hopes and they've invested in him, that these parents need to wrestle with. In order to let go.
Traveling to any other country only prolongs the agony. And it involves another layer of legal maneuvering. This will help neither the child, nor his parents.
Trump wants attention. The baby has that attention now, so he's grabbed on to this tragic situation.
The Pope might do best by coming to visit the child and giving a blessing, while assisting the parents in letting go.
We must all learn to let go. Facing Death is part of that. Death is part of life. For us all.
It's difficult to accept death. Especially the death of a baby or a child. But death comes to us all. And we need to accept that. Right now it's the acceptance of death, the acceptance of losing a child, with along the hopes and they've invested in him, that these parents need to wrestle with. In order to let go.
Traveling to any other country only prolongs the agony. And it involves another layer of legal maneuvering. This will help neither the child, nor his parents.
Trump wants attention. The baby has that attention now, so he's grabbed on to this tragic situation.
The Pope might do best by coming to visit the child and giving a blessing, while assisting the parents in letting go.
We must all learn to let go. Facing Death is part of that. Death is part of life. For us all.
23
If this child was from one of the countries that are on Trump's travel ban what would he do?
37
Is Trump setting a precedent that he is prepared to take care of every incurably genetically disordered child in the UK (we know he is getting rid of millions of families healthcare so obviously not bothered about them) who is unable to live without a ventilator.
This case has been through the British courts and the european courts who both came to the same conclusion that the offered untested experimental treatment in the States has no benefit for the child's condition. Put your own house in order Trump.
This case has been through the British courts and the european courts who both came to the same conclusion that the offered untested experimental treatment in the States has no benefit for the child's condition. Put your own house in order Trump.
20
It is quite sad to hear that these parents have ended up in this situation. If the medical specialists have said that there isn't much that can be done to save this child then the correct thing to do would be to let the child leave this world in peace. Throwing more resources into a situation that cannot be changed is not only ignorant but rather an insult to all the others who would benefit from the same "limited" resources.
12
Terry Schiavo revisited on an international scale.
15
I have not walked in the shoes of Connie Yates and Chris Gard, and dare not presume what I would do in their circumstances. I can be disgusted by the behavior of a President who interferes where he is not needed but ignores heart-rending medical entreaties where he and his Administration are morally obligated to assist.
25
Because Donald Trump knows best when it comes to anyone's healthcare.
26
Trump saw an opportunity to be the hero (alongside the Pope, no less!) in a heartbreakingly hopeless case and he ran with it. The gesture is all that matters to him.
I thought his use of the word "delighted" to describe his feelings about wanting to help was especially jarring.
I thought his use of the word "delighted" to describe his feelings about wanting to help was especially jarring.
21
The pope has made an actual concrete offer. The Vatican pediatric hospital has offered palliative care until Charlie's natural death. They have not offered the gene therapy. The doctors at the Vatican hospital say there is no treatment for the genetic defect.
4
Trump and the US health system are liars. My mom was diagnosed with aplastic anemia at the age of 72. The cutoff date for a bone marrow transplant is 70. That was the decision by her insurance company. She died within 6 weeks of the diagnosis.
The insurance companies are the DEATH PANELS. And truly, Trump is a carnival barker, a conniving showman who cares zero about human beings. If Trump were alive in the 1700's, he would have slaves. And the insurance companies exist for profit.
I feel sad for the parents of this baby. They are going through agony. They tried everything.
The insurance companies are the DEATH PANELS. And truly, Trump is a carnival barker, a conniving showman who cares zero about human beings. If Trump were alive in the 1700's, he would have slaves. And the insurance companies exist for profit.
I feel sad for the parents of this baby. They are going through agony. They tried everything.
23
Unfortunately you are correct. Insurance companies do need to make a profit. Many are corporations with stockholders. They are not in the business for altruistic purposes. That's what is wrong with the healthcare system in the US.
10
It's not the insurance companies.
My husband has a progressive lung condition. The only "cure" would have been a lung transplant. For which he's too old.
We accepted that.
When death comes near, we will refuse any offer of a transfer to the ICU. He will die without unnecessary medical "torture" - it's all been discussed with his Lung Doctor, his Primary Care Doctor and the Hospice.
We already have a beautiful wooden urn, made and blessed by Trappist monks. That was my husband desire to spare me, when his time comes.
Death is not final, except to this "life" we know. Letting go is part of this life. What comes next is part of faith.
My husband has a progressive lung condition. The only "cure" would have been a lung transplant. For which he's too old.
We accepted that.
When death comes near, we will refuse any offer of a transfer to the ICU. He will die without unnecessary medical "torture" - it's all been discussed with his Lung Doctor, his Primary Care Doctor and the Hospice.
We already have a beautiful wooden urn, made and blessed by Trappist monks. That was my husband desire to spare me, when his time comes.
Death is not final, except to this "life" we know. Letting go is part of this life. What comes next is part of faith.
5
'To everything there is a season, and a time for every purpose under heaven'.
Clearly it's time. There are problems modern medicine cannot solve. Perhaps years from now recombinant DNA therapy, or some other procedures yet unenvisioned, will prevent problems such as Charlie's, or correct them in the womb. (Possibly through the kind of stem cell research the American religious right who form so large a part of Trump's base, and the Catholic Church, oppose.) In that perspective, Charlie was born too soon in history; there will always be people for whom cures arrive too late.
The tragedy is that Charlie can't understand what's happening to him. He, and his heartbroken parents, have suffered a fate even worse than his pain or his inevitable death - passed from being an individual to a Symbol or a Cause, used by public figures for their own self-serving or self-righteous rhetorical and political ends.
Clearly it's time. There are problems modern medicine cannot solve. Perhaps years from now recombinant DNA therapy, or some other procedures yet unenvisioned, will prevent problems such as Charlie's, or correct them in the womb. (Possibly through the kind of stem cell research the American religious right who form so large a part of Trump's base, and the Catholic Church, oppose.) In that perspective, Charlie was born too soon in history; there will always be people for whom cures arrive too late.
The tragedy is that Charlie can't understand what's happening to him. He, and his heartbroken parents, have suffered a fate even worse than his pain or his inevitable death - passed from being an individual to a Symbol or a Cause, used by public figures for their own self-serving or self-righteous rhetorical and political ends.
38
I feel bad for the parents but as their child doesn't have a voice, they need to do what is best for the child and that's to let him die peacefully, not prolong his suffering. I understand that they're hoping a miracle will happen but at this point, they're being more selfish about their needs than what their son's needs are.
I still can't understand why we as a society think it's humane to put a pet down because it might be suffering from some terminal disease but we think humans should suffer through it and not deserve a peaceful, dignified way to end their lives. Some states allow this (e.g., Oregon, California) but most do not and it's incredibly sad that a large portion of society thinks it makes more sense for a terminally ill patient to continue suffering than for his/her living loved ones to have to deal with death.
I still can't understand why we as a society think it's humane to put a pet down because it might be suffering from some terminal disease but we think humans should suffer through it and not deserve a peaceful, dignified way to end their lives. Some states allow this (e.g., Oregon, California) but most do not and it's incredibly sad that a large portion of society thinks it makes more sense for a terminally ill patient to continue suffering than for his/her living loved ones to have to deal with death.
48
Mr. Trump needs to explain if this child were in the U.S. , who would pay for the medical care to keep him alive? His parents? Insurance company? Medicaid?
70
The parents have the money through crowd funding. I am quite certain that they have fully researched the situation
2
No, you are not getting it correct. As someone who has faced this choice with a parent, Charlie's parents are choosing whether he should suffer a horrible, short life to make themselves (and you?) feel good, or whether they should accept the reality that he is dying and begin grieving.
There is nothing noble in torturing a child or parent because you will feel bad.
It's normal to feel grief.
There is nothing noble in torturing a child or parent because you will feel bad.
It's normal to feel grief.
55
Donald Trump once again shows his lack of intelligence. He has no business interjecting that lack of intelligence into this family's lives. He may portray himself as a savior of mankind, and try to get others to believe it. But giving a child's parents hope when he has no clue is heartless.
34
Why does trump have to use this painful private family crisis for his self promotion? The man does not care one whit for the tens of thousands of suffering and dying children in central america (from the drug gangs funded by US drug users), in Syria, in Sudan and so many other places. Is this another campaign ploy to US Christians who continue to ignore his deplorable character and incompetence?
41
What's is the Pope and Trump giving theses people false hope. All they are doing allowing the child to suffer because they can`t let go. I know it is not easy but if they actually loved this child more than they loved themselves they wouldn't be putting him through this.
16
I totally agree.
What would you do if it were your child?
4
I would say my goodbye, and let him die. There is no other option for me.
Even the nucleoside therapy will do nothing more than 'prolong the child's suffering.' There is no question that the humane action would be to let him die.
Trump, in typical fashion, confuses everything by supporting a futile and cruel therapy for a foreign child, while his party devises ways to take even basic medical coverage away from American children.
Even the nucleoside therapy will do nothing more than 'prolong the child's suffering.' There is no question that the humane action would be to let him die.
Trump, in typical fashion, confuses everything by supporting a futile and cruel therapy for a foreign child, while his party devises ways to take even basic medical coverage away from American children.
11
I would do the same as these parents. I would try to save my child's life
A child that cannot breathe or move on it's own is very likely not going to be the subject of a miraculous cure, despite intervention by the Pope. The only thing that should matter here is what's in the best interests of the family and the boy.
9
This is yet another example of how we continue to devalue life whether is is the unborn, the recently born or the elderly. This is not about insurance and its not about medicine. This is about hope and faith. Sadly, that is something that is quickly vanishing from our society and the pages of the New York Time.
1
Your sentiments are noble.
But the child is suffering from all the interventions to keep him breathing. Ever been on a breathing tube? Even seen someone desperately trying to get rid of it? Because it's so painful to have that stuck in your throat? That is torture for the baby!
Death, when it comes naturally, compassionately, ethically, is kinder than medical torture - which is what's happening when you go to extraordinary lengths to prevent death.
T
But the child is suffering from all the interventions to keep him breathing. Ever been on a breathing tube? Even seen someone desperately trying to get rid of it? Because it's so painful to have that stuck in your throat? That is torture for the baby!
Death, when it comes naturally, compassionately, ethically, is kinder than medical torture - which is what's happening when you go to extraordinary lengths to prevent death.
T
16
I'll but in terms you may understand. Hope and faith are not reducing the suffering of this child and his parents. What if it is God's choice to have this poor child join him and you are denying God's will.
1
This poor child and his family have been turned into a swirl of hope,denial , political and religious demagoguery and fake news .
Trump is a " plug puller " for thousands of Americans and should stay out of this arena, same Pope Francis with so many poor children having been sexually abused by catholic clergy.
This case needs silence and respect.
Let the parents cry over the loss of this unfortunate child , whose destiny has been unfairly complicated by medical progress that unable to correct a devastating genetic failure.
Trump is a " plug puller " for thousands of Americans and should stay out of this arena, same Pope Francis with so many poor children having been sexually abused by catholic clergy.
This case needs silence and respect.
Let the parents cry over the loss of this unfortunate child , whose destiny has been unfairly complicated by medical progress that unable to correct a devastating genetic failure.
31
You could not have been said it better. Thank you for your wise comment.
1
Trump had no business injecting his opinion on this case. Just as Jeb Bush had no business in sticking his nose in the Schiavo situation.
The parents are unable to acknowledge the hopelessness of the child's situation and allow the baby to die which would release it from the horror that is it's life of seizures, blindness, deafness, inability to breathe etc.
Prior to the extreme measures that hospitals and doctors can take today, this child would have been allowed to die at birth instead it was kept alive and now the parents are faced with having to make a decision that nature had already made when the child was born with an illness that rendered it incapable of surviving without heroic measures being taken.
Hopefully the parents will mercifully allow the baby to pass away.
The parents are unable to acknowledge the hopelessness of the child's situation and allow the baby to die which would release it from the horror that is it's life of seizures, blindness, deafness, inability to breathe etc.
Prior to the extreme measures that hospitals and doctors can take today, this child would have been allowed to die at birth instead it was kept alive and now the parents are faced with having to make a decision that nature had already made when the child was born with an illness that rendered it incapable of surviving without heroic measures being taken.
Hopefully the parents will mercifully allow the baby to pass away.
77
The same Trump who wants to throw poor and modest income American families off of the Medicaid and Expanded Medicaid health care rolls inserts himself and therefore the US into a foreign country's bioethical issues surrounding a dying child's access to useless medical interventions. Mr. President what about American children who need access to medical care that will enhance their development and ability to thrive as adults in our country? This grossly incompetent President has no understanding of what it means to make America Great Again.
53
Let me get this clear: it isn't that the hospital is refusing to provide the treatment (they don't offer it), or that the national health system is refusing to pay for it (the Gards raised enough money), but that they are refusing to release the infant to the parents even to allow them to go get this treatment.
In effect, they are saying, once you come under our care, we decide when you leave our care, even if you no longer want our care, even if your further care outside the country would no longer cost us any more.
In effect, they are saying, once you come under our care, we decide when you leave our care, even if you no longer want our care, even if your further care outside the country would no longer cost us any more.
5
Well said.
I hate to draw parallels, but this was a key theme in Nazi Germany. The state determines who lives and who dies. But the UK and the US are even worse than the Nazis in one important sense. It is frequently not an authoritarian dictator who has influence over state decisions, but an ill-informed and easily led mob.
I hate to draw parallels, but this was a key theme in Nazi Germany. The state determines who lives and who dies. But the UK and the US are even worse than the Nazis in one important sense. It is frequently not an authoritarian dictator who has influence over state decisions, but an ill-informed and easily led mob.
@Joconde: It may look like that superficially, but what the courts are doing is acting in the best interests of the child, because his parents are clearly unable to. They are not thinking rationally, but allowing their inability to deal with death to guide their behavior, and are therefore making poor choices on behalf of their child. They're clinging to the miniscule chance that some miracle will occur, but even the doctor who originally offered the alternative treatment admits that it will not be effective. Life is not a Hollywood movie, in which someone rushes in at the last moment and annouces a complete cure. The courts are able to understand the issue precisely because they are not being driven by blind emotion, as the these poor parents are. This child is suffering. It cannot live on its own, and never will. The courts can rationally perceive this and acknowledge it, and they are doing the compassionate and right thing for the child.
8
This is a desperately sad situation for the family, but I can't help feeling their situation has been hijacked by politics.
It may be that Donald Trump is genuinely moved by this case, but if so, why does he ignore all the other similar cases in the US?
I don't remember Trump campaigning to save Israel Stinson. Perhaps Trump didn't have so much time to watch TV before he was President.
It's not about the money, but money is an issue right now, in US healthcare even more than in Britain. and this all looks like a diversion, trying to distract people from the BCRA; I'm struck by the alarming disparity between the GOP's vision of healthcare and what we enjoy in Britain with the NHS.
If this family were in a post-ACA US, could they afford the treatment? Could they afford a policy that covered it? Could they even afford the treatment he's already had, or would they be bankrupt by now?
But don't think about that, Trump says. Just look at the poor little baby.
I want to believe he's making these gestures out of genuine compassion, but it still looks like cynical populism.
It may be that Donald Trump is genuinely moved by this case, but if so, why does he ignore all the other similar cases in the US?
I don't remember Trump campaigning to save Israel Stinson. Perhaps Trump didn't have so much time to watch TV before he was President.
It's not about the money, but money is an issue right now, in US healthcare even more than in Britain. and this all looks like a diversion, trying to distract people from the BCRA; I'm struck by the alarming disparity between the GOP's vision of healthcare and what we enjoy in Britain with the NHS.
If this family were in a post-ACA US, could they afford the treatment? Could they afford a policy that covered it? Could they even afford the treatment he's already had, or would they be bankrupt by now?
But don't think about that, Trump says. Just look at the poor little baby.
I want to believe he's making these gestures out of genuine compassion, but it still looks like cynical populism.
24
Every person, that is born alive, has a right to an aware, cognitive life. I am so sorry for the parents of this child, given the diagnosis by medical professionals, will not ever be aware of his life. I would hope that they let the body of this child Rest In Peace. If our current President and his Party of Republicans cared about all life, they would stop playing games and insist on single payer healthcare for all of their citizens. I am ashamed to have a President in our Office of Presidency that only cares for their citizens when it looks good.
25
I have known more than a few severely disabled children and adults. They require care that most of us cannot even imagine. But they do have cognitive abilities and are able to RESPOND to love and caring people and to pain and discomfort. I have known their parents and the extraordinary professionals that work everyday to improve, or at least keep from degenerating, their quality of life. From what I have read, this child will never even have that level of quality of life. I feel for the parents but it is up to them and their doctors to make this decision. No me, not the President of a country that is not involved or ever the Pope.
13
The incontrovertible fact is that this child has no chance of improvement or even survival and is very likely suffering as it is.
It appears that the parents have quite gotten used to the spotlight, raising over a million dollars for their quixotic quest. At this point it is more about them as victims of the courts and the medical profession than about what is right for the child. The parents of this unfortunate child need to let go.
It appears that the parents have quite gotten used to the spotlight, raising over a million dollars for their quixotic quest. At this point it is more about them as victims of the courts and the medical profession than about what is right for the child. The parents of this unfortunate child need to let go.
23
A variation on the Schiavo case from the 90's? I believe I can understand the Pope's position. Supposedly God answers all prayers, but sometimes the answer is, "No".
Trump is just grandstanding.
It would be nice if he did something authentic for a change. I'd really like to root for him, but all his insincerity makes it difficult.
Trump is just grandstanding.
It would be nice if he did something authentic for a change. I'd really like to root for him, but all his insincerity makes it difficult.
16
It is the height of paradox that a country could be so paternalistic about the medical care of a single individual under its public health care system, yet be so laissez-faire about the safety of thousands living in its public housing system, the former being decided by expert panels (if ever there was a "death panel"!), the latter left to self-enforcement by local councils with no expertise in fire or building codes.
And if a wrong decision is made in each case, the former leads to the suffering of one person, while the latter has led to the death of probably a hundred tenants. That is to say, the margin for error is greater under the paternalistic health care system than under the laissez-faire public housing system. Put another way, the worst thing that could happen to little Charlie if he went through with the treatment would be that he suffered unnecessarily, but the best thing could be that he improved.
No doctor has said Charlie had 0% chance of improving with the experimental treatment. But he sure has a 100% chance of dying if he did not get it and put on palliative care.
Let the parents have their one last change at hope. The UK government should spend their resources on building codes and enforcement of fire safety standards, a lot more pain and suffering could be avoided and a lot more good could be gotten.
And if a wrong decision is made in each case, the former leads to the suffering of one person, while the latter has led to the death of probably a hundred tenants. That is to say, the margin for error is greater under the paternalistic health care system than under the laissez-faire public housing system. Put another way, the worst thing that could happen to little Charlie if he went through with the treatment would be that he suffered unnecessarily, but the best thing could be that he improved.
No doctor has said Charlie had 0% chance of improving with the experimental treatment. But he sure has a 100% chance of dying if he did not get it and put on palliative care.
Let the parents have their one last change at hope. The UK government should spend their resources on building codes and enforcement of fire safety standards, a lot more pain and suffering could be avoided and a lot more good could be gotten.
2
Please, for your next article, focus on the actual disease in its many devastating forms. You've gotten enough mileage out of Baby Charlie's tragedy; it's time now to look closely at mitochondrial disease in the US and ask how it's managed by our health care system. What are the consequences of our current political climate on research funding for this and other rare diseases? What about big pharma's goal to charge outrageous prices for medications that help victims of rare diseases? What do people with them have to look forward to when finding health insurance to cover them? How does one even find doctors who recognize and diagnose them, especially when they're adult onset? How does it feel to be sick in this political climate? There are many pertinent questions about rare diseases that should be asked now, in this political climate. Like people with Muscular Dystrophy, many people with mitochondrial disease live for years. This is much larger than two or three cases a month. Again, this needs to be examined within the context of health insurance, medical research, and ethics. Please take this opportunity to examine rare diseases in a much larger context.
18
As pointed out, in this case, money is not the issue. It's even more fundamental than Charlie's treatment. It's about when does the opinions of doctors and judges supersedes the rights of parents, even to the extent GOSH will not allow the parents to tale the baby home to die. So now it is official, doctors can now make "quality" of life judgements in, not just deciding to treat, but in withholding treatment. Doctors and courts and now assuming that in deed, they have the power of a god and will to the full extent of the courts enforce their power of life and death and over grieving parents. Where is this power to play God to be used next, smokers?, drug addicts?, downs syndrome?, Alzheimer's?, people of a certain type? etc. Not the sort of road you would have thought Doctors would want to go down. In this specific case, as with the King case, doctors are the ones shown wanting in terms of compassion and have lost dignity and respect.
3
Did you ever consider that the courts and hospital are acting in Charlie's best interests, to prevent him from even more suffering?
Charlie has rights too and perhaps his parents are not in an emotionally right frame of mind to protect those rights on his behalf.
Charlie has rights too and perhaps his parents are not in an emotionally right frame of mind to protect those rights on his behalf.
20
The very last factor that needs to be introduced into these complex situations is a self aggrandizing politician weighing in with anything other than we offer our prayers for the family. When that politician also happens to be an individual with a documented record of ethical challenges, it is beyond appalling. Having twice faced the "it's time for palliative care now" decision, after months of hope, complete strangers have no business intervening. Our President should stick to what he knows best on twitter; the obfuscation of truth.
15
So as soon as Trump is involved, we are supposed to know which side is right. Presumably, if Trump were in favor of the earth going around the sun, I would need to be against it.
I don't need Trump or the Pope to know what is ethically right here.
The couple wasn't ready to accept the decision. That is untrue. The couple was appalled by the decision. The decision should appall the Times too. I guarantee you if it were about any of the reporters' children, they would be appalled as well. The decision is NOT about whether to stop treatment against the will of the parents, which may be ethical if the taxpayers are paying &/or it's causing extreme suffering to the child, something the EU is not arguing. Nor is the decision about whether the couple is in denial (it sounds like they are). That is completely not the point.
The decision is illustrative of the despotic power of the state against the individual. The couple had raised private money to try experimental treatment. Whether it would work or not is ethically besides the point. The state is saying, "We have control over your child's life & we get to decide how you will treat him, not you, even when the state has no money involved in his treatment."
To justify this is appalling to me, as an individualist. I see appeals for desperate treatment of terminally ill children all the time. Come on. Just because Trump is involved, we are now supposed to do a 180, just for this case. That's not ethics; it's politics.
I don't need Trump or the Pope to know what is ethically right here.
The couple wasn't ready to accept the decision. That is untrue. The couple was appalled by the decision. The decision should appall the Times too. I guarantee you if it were about any of the reporters' children, they would be appalled as well. The decision is NOT about whether to stop treatment against the will of the parents, which may be ethical if the taxpayers are paying &/or it's causing extreme suffering to the child, something the EU is not arguing. Nor is the decision about whether the couple is in denial (it sounds like they are). That is completely not the point.
The decision is illustrative of the despotic power of the state against the individual. The couple had raised private money to try experimental treatment. Whether it would work or not is ethically besides the point. The state is saying, "We have control over your child's life & we get to decide how you will treat him, not you, even when the state has no money involved in his treatment."
To justify this is appalling to me, as an individualist. I see appeals for desperate treatment of terminally ill children all the time. Come on. Just because Trump is involved, we are now supposed to do a 180, just for this case. That's not ethics; it's politics.
9
The "individual" in this case is the baby, not the parents. It has the right to have informed decision about its medical care made in its best interests and that's what the courts are upholding. In the UK the notion of personal liberty does not generally involve being given total control over the lives of those dependent on you.
6
American babies are 50pc more likely to die in the first five years of life than British babies. (Please note that the UK measures infant mortality in exactly the same way as the US.) Indeed, out of the world's 20 richest countries, the US comes dead last in infant mortality rates.
And American women are three times more likely to die in childbirth than British women. In fact, the US is the only rich country where maternal mortality rates are increasing: women in America are now twice as likely to die in childbirth than they were 25 years ago.
http://www.pbs.org/newshour/bb/women-dying-childbi...
When will Trump tweet about that?
And American women are three times more likely to die in childbirth than British women. In fact, the US is the only rich country where maternal mortality rates are increasing: women in America are now twice as likely to die in childbirth than they were 25 years ago.
http://www.pbs.org/newshour/bb/women-dying-childbi...
When will Trump tweet about that?
33
In a tragically complex situation as this, the very last factor that needs to be inserted is the opinion of a self aggrandizing politician. When that politician suffers from a documented record of ethical challenges, it is beyond appalling. Having faced the "it's time for palliative care" decision twice, the very last thing I would have welcomed was the uninformed opinion of someone who cared neither for me nor my loved one. The President should return to tweeting what he knows best--obfuscation of the truth.
11
I'm for doing everything possible to save a child's life; however, the prognosis in this case seems to be bleak. It seems that it’s time to end the parents’ suffering as well as the child’s. Trump, of course, is latching onto this case because it gains him lots of publicity as he mindlessly tweets away. My question is why isn't Trump putting any effort into saving American children and adults who will die from much less severe diseases than this because they will lack adequate health insurance to save their lives under the Republican healthcare plan?
34
If you have spent any time in a hospital and watched babies or adults on life support, you would agree that this is no way to live. This child should be allowed to die in peace. I hope that a good death for the infant will allow the parents to find some solace.
17
As trump and the GOP put on their green eggs and ham act to dismantle and destroy the Affordability Care Act - a law that was taken all the way to the Supreme Court by obstructionists (after over 160 GOP amendments had been added to it and it was made into a Republican plan), where it was deemed legitimate and made law, Little Lord trumple-twit is now showboating to disrupt decisions England??!?
Why did he do that, really. Was it because he grew tired of "weighing in" with his twittering about how much he hates our free press in this country on Independence Day instead of Putin?
The only thing t hat doesn't suprise me about trump at this point is that he isn't sporting a shiney new "presidential" uniform replete with fake medals, jackboots, and a riding crop.
Why did he do that, really. Was it because he grew tired of "weighing in" with his twittering about how much he hates our free press in this country on Independence Day instead of Putin?
The only thing t hat doesn't suprise me about trump at this point is that he isn't sporting a shiney new "presidential" uniform replete with fake medals, jackboots, and a riding crop.
70
I can't really imagine any problem for which the involvement of Trump would be a help rather than a hindrance. His attaching himself to this poor baby's case is all about him, not the baby.
11
Am I getting this correct, an infant's parents want to try to keep their child alive and get him healthy, despite the extreme unlikelihood of any possible treatment and this is described as a bad thing?
His parents "threw a spanner in the works" by trying, against the odds, to save their child? What exactly are "the works" that want to work against parents from fighting for their children?
And of course, as with so many articles in this paper, Donald is mentioned to let the readers know which side they need to be against. Inserting him was needless (he has no power over the parents or UK health care system) otherwise.
His parents "threw a spanner in the works" by trying, against the odds, to save their child? What exactly are "the works" that want to work against parents from fighting for their children?
And of course, as with so many articles in this paper, Donald is mentioned to let the readers know which side they need to be against. Inserting him was needless (he has no power over the parents or UK health care system) otherwise.
18
ML,
You must understand the irony of our President interfering in a health matter in the case of a baby, from another country, with a rare disease, a pre-existing condition, to argue that this child should be kept alive at all costs. This is the same President, from the same Party, the Republican Party, with power over parents in this country, the US, who wants to take away healthcare from millions of Americans. This is the same President, from the same Party, the Republican Party, who wants to cut funding for science, science that tries to solve problems about things like disease.
Please tell me you get it?
You must understand the irony of our President interfering in a health matter in the case of a baby, from another country, with a rare disease, a pre-existing condition, to argue that this child should be kept alive at all costs. This is the same President, from the same Party, the Republican Party, with power over parents in this country, the US, who wants to take away healthcare from millions of Americans. This is the same President, from the same Party, the Republican Party, who wants to cut funding for science, science that tries to solve problems about things like disease.
Please tell me you get it?
95
Risking continuing to subject your child to pain, with zero hope of a quality of life improvement, serves only to avoid grief. It does nothing at all for the patient. There is nothing ethical or good about this.
17
Prolonging suffering just the parents don't want to let go is cruel. Even the US doctor whom initially suggest the experimental therapy has now said, after actually reviewing the child's medical file, that the treatment won't do much of anything for him.
9
When people demonstrate a profound resistance to death, as in this case, it becomes clear that our culture is dominated by death, not life. In other words, we live in a culture of the fear of death, not a culture of the celebration of life.
That is a significant inversion from the past. And it is not a good portend for the future. But so it is. Dark follows light, and light will follow dark.
That is a significant inversion from the past. And it is not a good portend for the future. But so it is. Dark follows light, and light will follow dark.
32
In the US, an accountant at the couple's insurance company (if they were lucky enough to have insurance) would have long ago "pulled the plug."
Anyone else see the irony in Trump supporting this family when he is perfectly happy to push and sign the GOP bill that will deny insurance and care to twenty million of his own people?
Anyone else see the irony in Trump supporting this family when he is perfectly happy to push and sign the GOP bill that will deny insurance and care to twenty million of his own people?
161
This is NOT about the bizarre derangement syndrome involving "Not Hillary." This is about the rational limits of medicine.
So often, the public, egged on by cable TV news fools, demand "no limits on medical care."
Wrong. That unfortunate child is near death. It is only a matter of time. If he was "taken home," he might not make out of the room, alive.
And the millions spent in his final hours will NOT be spent on thousands of poor children who are still living. That is just insane, IMHO.
Pray for that child and his family. Then go to work, there are bills to pay.
So often, the public, egged on by cable TV news fools, demand "no limits on medical care."
Wrong. That unfortunate child is near death. It is only a matter of time. If he was "taken home," he might not make out of the room, alive.
And the millions spent in his final hours will NOT be spent on thousands of poor children who are still living. That is just insane, IMHO.
Pray for that child and his family. Then go to work, there are bills to pay.
9