It saddens me to see how a very private situation becomes a news topic. Little Charlie is now in a beautiful place. Blessings to the family.
3
Charlie was living a life the people around him wanted him to live without any way to let people his wishes. All while waiting for a miracle to happen.
Parents are young and can rebuild their lives.
Rest finally in peace little angel.
Parents are young and can rebuild their lives.
Rest finally in peace little angel.
7
Because somehow we have become narcissistic and think of ourselves as gods ln our search of fulfillment we are losing grasp of reality...
7
I doubt there is anything as heart breaking than losing a child. The parents refer to letting their son "die with dignity". I'm not sure that many of the people reading this story have experienced what it is like to have tubes in both nostrils and one down his throat. It is very uncomfortable. He was not living in dignity for sure and certainly not in comfort. I'm also puzzled by so much publicity about a situation so private and sad.
9
"and hospital employees have received death threats."
Hmm.
Hmm.
3
This is why the USA is lightyears ahead of my country - what this boils down to is a question of whether the child is:
A) a custodian of the parents
B) a ward of the State
Ultimate authority and decision should reside with the parents; the fact this can cimrcumvented by 'experts' and other authoritative figures highlights how illiberal some of our laws are.
A) a custodian of the parents
B) a ward of the State
Ultimate authority and decision should reside with the parents; the fact this can cimrcumvented by 'experts' and other authoritative figures highlights how illiberal some of our laws are.
3
There's a difference between being 'alive' and living. Even if a miracle cure were to be discovered today, it wouldn't give this severely damaged little boy back what he has lost. Both he and his family have suffered enough.
10
From the outset Charlie Gard's prognosis was grim. Refusal to abandon hope even as there is no reason for it leads us to this: a protracted legal fight, an inability to accept reality and a barrier to grieving a natural, inevitable outcome. For the remainder of their lives, the Gards will regret that something wasn't done for their baby earlier even as no proof exists that his condition would have improved. Any child's death is immeasurably sad but to live with the notion that one bears responsibility for events beyond one's control twists the knife in the heart.
13
Protesters? Eke gad, what is it with people these days? Get out of the way and let the family suffer ( it the correct the word), or mourn for their child – alone
8
Indeed to God we belong and to Him we return.Rest in peace dearest Charlie .My condolences to Mr. and Mrs. Gard. You did all you could to save your child but as hard as it always is, letting go is sometimes the best we can do.
17
Why is this article open to comments?Respect the family and lay off.Save the holier than thou attitude for another article.It must be a very difficult decision to make and the parents deserve some space.
23
Absolutely. This has nothing to do with any of us in the comments section. It is a personal, intimate, and excruciating decision. I know of this first hand; my family has been here.
15
In a way, you are absolutely right, it is none of our business. But there are two issues here; in their efforts to save Charlie, his parents made it the public's business. The second issue, when should extraordinary efforts to save a compromised patient be abandoned, has not and probably should not be settled.
6
Mik--
Agree, we should all let this one go by in respect to the family and their inconsolable grief.
Agree, we should all let this one go by in respect to the family and their inconsolable grief.
3
Why if Trump or Pope Francis or the American neurologist Hirano intervened and offered to help--why could the English hospital not washed its hands and turned over the case to those good samaritans? In the offer they should have had have to pay for the experimental or palliative care. I guess the pope offered the services of a hospital in the Vatican (absurd, the parents would have had to move to Italy to live alongside the baby until it passed, if not kept indefinitely on life support, but that would have been their choice. But why Trump andMelania who is so wealthy not offer to pay as philanthropists for the baby's hospital costs in the US? Or why the neurologist not offer to pay for the experimental therapy that would enhance his career? Btw, I'm really surprised Dr. Hirano gave false hopes to those parents. The prognosis was pretty bad to start with since the child was also blind and deaf--and these conditions were not reversible. Maybe Hirano just wanted to try his drug on a new a human subject (a bit irresponsible). But then, he should have paid for it. I'surprised at the pope too. The Church's position is not to indefinitely extend life artificially. I hope these parents can move on with their lives and bring other children to their lives.
2
Dr. Hirano's request to volunteer Charlie for a treatment never tried in humans with no reasonable way to predict outcome was not only "a bit irresponsible", but also highly questionable on ethical grounds. Now he claims it is too late for his treatment. How convenient!
Americans are constantly told they enjoy the best medical care of the world and expect the highest standard of care from their doctors. Billions are spent on the promise of deliverance. Dr. Hirano represented one of the most prestigious biomedical research institutions of this country. Perhaps giving NIH more money does not suffice. Rather, the country needs a discussion how tax payer's money is used.
Americans are constantly told they enjoy the best medical care of the world and expect the highest standard of care from their doctors. Billions are spent on the promise of deliverance. Dr. Hirano represented one of the most prestigious biomedical research institutions of this country. Perhaps giving NIH more money does not suffice. Rather, the country needs a discussion how tax payer's money is used.
2
Heartbreaking. Condolences. Hopefully they will be able to make it through this and maybe have another child.
3
They will need a lot of genetic counselling - they both carry the gene
2
It is a GENETIC disease.
Both parents have to carry the gene for the disease
25% chance of having another with the same fatal disease
50% chance of having a child who will carry the gene (and pass it on to their children) but not develop the disease
25% chance of child without the gene
They should never have anther child together.
Both parents have to carry the gene for the disease
25% chance of having another with the same fatal disease
50% chance of having a child who will carry the gene (and pass it on to their children) but not develop the disease
25% chance of child without the gene
They should never have anther child together.
6
I think this whole episode demonstrates how many hospital staff lack the skill to correctly communicate to parents. If it is the job of staff to educate and inform parents to help them learn how to let their child go then this is just another one of the frequent episodes where they got it wrong. If this role falls to society then I think Pope Francis should direct cardinals to take a long hard look at the church to see how it supports its own community. Where was that support when those parents needed it the most?
1
Probably unfair. No question that many experienced and talented individuals worked with the Gard family. There is just a huge variability in how people accept bad news. In my career in medicine, this has ranged from hostility, belligerence, and disbelief in family members of several elderly patients with advanced, metastatic cancer all the way to a 23-year-old hugging me and thanking me on her way out of the hospital to a hospice facility. Some people can accept death and some just cannot. Agree, however, that training in palliative medicine has helped even this stubborn old doctor recently learn new techniques in communication.
19
Unless I've missed a story on this - the Times has failed to mention that U.S> courts do and have ordered children to be taken off life support - look at the case of Israel Stinson, for example.
These are complicated, sad stories. By not mentioning even one of these cases in their Gard coverage, the Times is contributing to the mistaken belief that the Gard case is about socialized medicine or British and EU law and could never happen in the U.S. It can and it does.
These are complicated, sad stories. By not mentioning even one of these cases in their Gard coverage, the Times is contributing to the mistaken belief that the Gard case is about socialized medicine or British and EU law and could never happen in the U.S. It can and it does.
28
My sympathy to Charlie's parents who have lived through an ongoing nightmare as they sought to do everything possible for Charlie.
My utter contempt goes out to Dr. Hirano who offered Charlie's parents hope when there was none. Dr. Hirano, who until last week had never examined Charlie nor read his complete record, acted in a reckless and cruel manner. How interesting that Dr. Hirano holds a financial stake in the drug he wanted to use on Charlie. No responsible or ethical doctor would have acted as Dr. Hirano did.
My utter contempt goes out to Dr. Hirano who offered Charlie's parents hope when there was none. Dr. Hirano, who until last week had never examined Charlie nor read his complete record, acted in a reckless and cruel manner. How interesting that Dr. Hirano holds a financial stake in the drug he wanted to use on Charlie. No responsible or ethical doctor would have acted as Dr. Hirano did.
29
Spot on!
Nothing but sympathy for the parents.
Nothing but contempt for all these who used this tragedy to push their own agenda.
Nothing but sympathy for the parents.
Nothing but contempt for all these who used this tragedy to push their own agenda.
4
As a mom to 3, words just cannot express the empathy I feel towards these parents and their son. Too little, too late. The English healthcare system totally failed the parents on this one. They didn't react soon enough. The damage is done and irreversible. My heart really goes out to these parents, what a heart-breaking situation. Perhaps nothing could have saved this baby...but the parents will never be at peace, because they will never know for sure. Heart breaking! ...my sincere condolences to these two young parents..
4
I don't think we do know that the UK failed to respond quickly enough; given how rare the disorder is, any hospital's response might have been identical. Great Ormond Street is a huge hospital and presumably cutting-edge. Let's not demonize the nasty public health system without knowing more.
25
Unfortunately, you are drawing a conclusion that is not based on the facts as stated. There is no evidence to demonstrate that the experimental therapy would have worked if it had been given sooner. The article does, however, state that it had never been tried in this particular mutation, so it was totally unproven and would have been so regardless of when it had been given. Nor is there evidence that the health system failed this child: you could only make that leap without a clear understanding the available information. One might even argue that by not subjecting him to an unproven therapy that had little chance of success, the health system was acting in the child's best interests.
Nonetheless, it's sad beyond words.
And it's why science matters.
Nonetheless, it's sad beyond words.
And it's why science matters.
28
Perhaps read the whole story - the facts not the emotion
https://www.judiciary.gov.uk/wp-content/uploads/2017/07/gosh-v-gard-2407...
It was too late in January - unltill this poor GOSH supported more treatment, then after prolonged fitting they felt it would be cruel.
The real enemy here is the fact that a doctor was willing to use charlie as a lab rat without even seeing him. Reading his notes or examining scans. Seems he was more interested in money and the experiment than the baby
But read the facts
https://www.judiciary.gov.uk/wp-content/uploads/2017/07/gosh-v-gard-2407...
It was too late in January - unltill this poor GOSH supported more treatment, then after prolonged fitting they felt it would be cruel.
The real enemy here is the fact that a doctor was willing to use charlie as a lab rat without even seeing him. Reading his notes or examining scans. Seems he was more interested in money and the experiment than the baby
But read the facts
3
Geez seriously. No parent, as some of you would have it, is foolish and selfish to turn over heaven and earth in the desperate hunt for a cure.
It's worth noting that some extraordinary advances in treatment have come because of the refusal of parents to give up in the face of "common sense."
But those outcomes are uncommon. Every parent of a gravely ill child hopes to beat the odds.
Those of us who have been blessed with healthy children who have become adults should take a moment to thank God or whatever power you do or do not believe in for the immeasurable gift we have been given, and ache for these parents who can never replace this individual child, regardless of what the future gives them.
It's worth noting that some extraordinary advances in treatment have come because of the refusal of parents to give up in the face of "common sense."
But those outcomes are uncommon. Every parent of a gravely ill child hopes to beat the odds.
Those of us who have been blessed with healthy children who have become adults should take a moment to thank God or whatever power you do or do not believe in for the immeasurable gift we have been given, and ache for these parents who can never replace this individual child, regardless of what the future gives them.
10
I have got two children. Both had to stay in the hospital for weeks after they were born because of our incompatible rhesus factors. The relief when they were home was unimaginable.
Charlie's tragic case seems to have grown into a culture clash between Britain and America. I mainly fault the Columbia University doctor for the over-the-top debate. He instilled unrealistic expectations in Charlie's parents. We are always warned not to trust foreign clinics promising unproven cures based on anecdotal evidence. I did not expect that kind of pitch from a premier US research hospital.
The plethora of the doctor's predictions of outcome shows that he did not know himself what the outcome of his treatment would be. At one stage he predicted 1 percent of significant improvement, then between 11 and 58 percent, whatever that huge range is supposed of mean, then we were pegged at 10 percent and now zero.
What chances would have Charlie truly had? What kind of significant improvement was to be realistically expected? Would have his seizure activity seized? Could he have possible regained his vision, his hearing? Could he have breathed on his own one day? Perhaps none of the above.
Did not the doctor basically ask the parents to volunteer Charlie as experimental subjects for his research? Did Charlie's parents understand that?
I feel the British doctors made the right decision. What this country needs is an honest discussion about the limitations of medicine.
Charlie's tragic case seems to have grown into a culture clash between Britain and America. I mainly fault the Columbia University doctor for the over-the-top debate. He instilled unrealistic expectations in Charlie's parents. We are always warned not to trust foreign clinics promising unproven cures based on anecdotal evidence. I did not expect that kind of pitch from a premier US research hospital.
The plethora of the doctor's predictions of outcome shows that he did not know himself what the outcome of his treatment would be. At one stage he predicted 1 percent of significant improvement, then between 11 and 58 percent, whatever that huge range is supposed of mean, then we were pegged at 10 percent and now zero.
What chances would have Charlie truly had? What kind of significant improvement was to be realistically expected? Would have his seizure activity seized? Could he have possible regained his vision, his hearing? Could he have breathed on his own one day? Perhaps none of the above.
Did not the doctor basically ask the parents to volunteer Charlie as experimental subjects for his research? Did Charlie's parents understand that?
I feel the British doctors made the right decision. What this country needs is an honest discussion about the limitations of medicine.
5
The world mourns with the parents. I hope they will find the peace that they deserve and I am grateful that they opened the world's eyes to the suffering of parents who have a critically ill child. I can understand wanting to keep a child from dying, dying is so final. Rest in peace, Charlie, your parents made sure the entire world knew Charlie Gard was born. The precious few days they had at home with Charlie before he was admitted to the hospital will always be remembered by the family.
2
My heart goes out to Charlie's mum and dad whose hopes have died with Dr. Michio Hirano's examination of their son. Ms. Yates and Mr. Gard exemplify the best that parents can offer a child. They educated themselves about Charlie's condition and tried everything within their power to help him. The cruelty of Charlie Gard's mitochondrial DNA depletion syndrome is unspeakable, but Charlie's short life has touched millions. May he go in peace.
7
"Charlie has a rare genetic abnormality known as mitochondrial DNA depletion syndrome. He cannot see, hear, swallow or cry."
Though I can understand a parent wanting to keep their child alive, it's almost cruel to force this one.
Though I can understand a parent wanting to keep their child alive, it's almost cruel to force this one.
14
It's likely that nothing, either in England, US, or Italy would have saved Charlie Gard, the legal fight notwithstanding, but whatever the case, his parents' absolute love for their little boy was beautiful. What a tragedy all around
5
There is no doubt that this is a tragedy but so is every death of a young child. Charlie Gard was blind and deaf, could not move on his own, could only breath with the assistance of a machine and could only eat through a tube. It must have been very stressful and agonizing for the parents to see their baby in this condition but there was nothing they or medical professionals could do to save this baby. Time to let him go. Sad but true.
8
I apologize for the the so called, not my, president's idiotic comments ... a fool, is a fool, is a fool. I'm having much harder time understanding Pope Francis. My condolences, heartfelt sorrow, and pity go out to Charlie's parents for what we've put them through. But most of all to Charlie - peace, you will soon see and touch the face of God.
6
Dr hirano should apologise- his actions have been unforgivable
https://www.judiciary.gov.uk/wp-content/uploads/2017/07/gosh-v-gard-2407...
https://www.judiciary.gov.uk/wp-content/uploads/2017/07/gosh-v-gard-2407...
3
I would fight to the bitter end for my little child as well, to the point of irrational thought and actions. I wish his parents the best and cannot imagine the grief they feel.
On the flip side, I am deeply disturbed by our president getting involved in this matter in order to score points with the right to life movement, much like occurred during the Terry Schiavo case of a dozen years ago. Episodes like this further erode my trust in the self serving GOP.
Godspeed to Charlie's parents, and hats off to the medical professionals that made the very difficult and very correct decisions.
On the flip side, I am deeply disturbed by our president getting involved in this matter in order to score points with the right to life movement, much like occurred during the Terry Schiavo case of a dozen years ago. Episodes like this further erode my trust in the self serving GOP.
Godspeed to Charlie's parents, and hats off to the medical professionals that made the very difficult and very correct decisions.
7
so much for British Healthcare
2
Incorrect. Nobody, not even his parents, has claimed that Gard received anything but excellent care. Gosh is one of the best children's hospitals (and research centers) in the world. And NHS does pay for experimental treatment and for treatment outside the UK. The issue wasn't funding.
In the U.S., there's a chance these parents would have been bankrupted by this.
And stories like this - where parents disagree with doctors - happen in U.S. hospitals every day. And, courts here have ruled against parents wishes to keep children on life support (look at Israel Stinson, for instance).
In the U.S., there's a chance these parents would have been bankrupted by this.
And stories like this - where parents disagree with doctors - happen in U.S. hospitals every day. And, courts here have ruled against parents wishes to keep children on life support (look at Israel Stinson, for instance).
18
British healthcare did great here.
10
Why? They went really far with this poor child with such a prognosis.
6
And what happens to the money raised, asks the cynic in me.
2
The parents are planning to use it for a foundation supporting the treatment of children with Charlie's disease.
3
They said they would donate it to others
1
As always, much of the furor surrounding cases like this has little to do with the facts. The bottom line is that even in 2017, not every sick child will live. We can't fix every broken heart, cure every cancer, or stave off every neuromuscular disease. None of us can ever completely escape the throes of suffering or death, and so we need to focus on helping people walk through these dark valleys, instead of trying to avoid them.
39
Sometimes the kindest thing a parent can do for a hopelessly ill child is to let him go and stop the pain. Soon, he will truly be one of god's little angels.
12
I cannot fault any parent to try to save their child's life. The fault lies with us who failed to protect their private anguishing grief with our impulse that everything must be the business of others.
10
GOSH is a world-class hospital whose doctors had considered all credible therapeutic avenues available to Charlie once his condition was diagnosed months ago.
Had it not been for this American doctor holding out baseless promises of significant improvement for Charlie with his untried treatment, Charlie's parents would have never waged this bitter battle and would not be left convinced that earlier treatment with this doctor's 'cure' would have saved their son.
This doctor greatly tarnished the reputation of American biomedical research and medicine. Where were the venerable American institutions that are supposed to safeguard this reputation? Where was the director of NIH, the director of the FDA? Where was Columbia's Institutional Review Board? Did they support this doctor?
Had it not been for this American doctor holding out baseless promises of significant improvement for Charlie with his untried treatment, Charlie's parents would have never waged this bitter battle and would not be left convinced that earlier treatment with this doctor's 'cure' would have saved their son.
This doctor greatly tarnished the reputation of American biomedical research and medicine. Where were the venerable American institutions that are supposed to safeguard this reputation? Where was the director of NIH, the director of the FDA? Where was Columbia's Institutional Review Board? Did they support this doctor?
35
Well said, the parents have still not accepted that all that could be done was done and it is largely down to to false hope that dr hirano gave - pretty unethical. It gives the impression that in the US doctors will experiment on anyone if there is payment. I'm sure that's not the case. But many American have blamed Charlie's demise on 'socialised ' medicine - whatever that is, when in fact the very system has provided charlie with excellent care, endless referrals to world wide experts and most of all sought to protect him from harm.
You would have thought that doctor hirano, being a scientist would have employed scientific methods
You would have thought that doctor hirano, being a scientist would have employed scientific methods
1
I don't believe anyone 'won' a thing in this case. I understand why Charlie's parents needed to fight for the possibility of experimental treatment. I understand why the hospital took the position it did.
While these two parents will always grieve the little boy for whom they fought so hard, I hope that one day they will find some kind of acceptance in knowing they truly did do everything they could as his mum & dad.
This isn't/shouldn't (imho) remain a political issue/debate any longer. I simply came in to say that Charlie & his parents are in my thoughts & I extend so much empathy for all the emotions & raw feelings they must be going through.
He is a beautiful baby. He may not be able to see or hear, but I'm sure he can sense his parents' love for him. May your final days be peaceful, painless & spent in the arms of those who love you.
While these two parents will always grieve the little boy for whom they fought so hard, I hope that one day they will find some kind of acceptance in knowing they truly did do everything they could as his mum & dad.
This isn't/shouldn't (imho) remain a political issue/debate any longer. I simply came in to say that Charlie & his parents are in my thoughts & I extend so much empathy for all the emotions & raw feelings they must be going through.
He is a beautiful baby. He may not be able to see or hear, but I'm sure he can sense his parents' love for him. May your final days be peaceful, painless & spent in the arms of those who love you.
8
Heartbreaking. I guess a lot of people are in denial about the fact that no matter what the delays and postponement of the inevitable, a terminally ill patient is a terminally ill patient. Because Charlie is a baby people want desperately to think there is hope. But if there were any realistic chance of helping Charlie, the hospital would not have denied treatment. I can only imagine what these bereaved parents are going through. But the scientific evidence remains that even if Charlie would have received experimental treatment on the very first day, his fate would have been the same. May the family have peace.
9
If Charlie needs to be spared suffering, so do the countless elderly in this country receiving treatments for terminal conditions.
Every day, people over 80 or 85 are being kept alive with medicines, painkillers, chemo, ventilators, dialysis, etc even though they suffer pain and cannot care for themselves independently and never will again--like Charlie.
No one who argues that Charlie should be allowed to die because they believe him to be suffering could disagree. Now let's apply the principle to people 80 and older with no hope for independent living.
Every day, people over 80 or 85 are being kept alive with medicines, painkillers, chemo, ventilators, dialysis, etc even though they suffer pain and cannot care for themselves independently and never will again--like Charlie.
No one who argues that Charlie should be allowed to die because they believe him to be suffering could disagree. Now let's apply the principle to people 80 and older with no hope for independent living.
5
Little of the media frenzy over Charlie Gard explains the experimental treatment. Some coverage even gives the impression that the treatment was a cure, but that is not the case.
The worst case scenario of the experimental treatment is that it would fail badly. Charlie Gard would have a severe immunological reaction to the drug—he would immediately go into organ failure and die.
The best case scenario of the experimental treatment is that it would slow his degeneration a bit and, given the severity of his illness, he would die a couple of years from now instead of before his first birthday. Nothing currently available about the experimental treatment indicates that it is a cure; it has only shown some efficacy in slowing down the disease in mice (extending their lives by one month) and in a variant of the illness that is not identical to Charlie Gard’s rare disease.
Many have argued that experimental treatments should be given without going through rigorous testing in the case where a patient’s situation is dire.
But imagine the position of the hospital if they gave an experimental treatment (tested only in mice which often react differently than humans) and the child immediately experienced a severe reaction and died. The hospital would be liable for causing harm, and the parents would be upset that the experiment caused their child to die even faster than if he had received only life support.
This is why most doctors will not experiment on their patients.
The worst case scenario of the experimental treatment is that it would fail badly. Charlie Gard would have a severe immunological reaction to the drug—he would immediately go into organ failure and die.
The best case scenario of the experimental treatment is that it would slow his degeneration a bit and, given the severity of his illness, he would die a couple of years from now instead of before his first birthday. Nothing currently available about the experimental treatment indicates that it is a cure; it has only shown some efficacy in slowing down the disease in mice (extending their lives by one month) and in a variant of the illness that is not identical to Charlie Gard’s rare disease.
Many have argued that experimental treatments should be given without going through rigorous testing in the case where a patient’s situation is dire.
But imagine the position of the hospital if they gave an experimental treatment (tested only in mice which often react differently than humans) and the child immediately experienced a severe reaction and died. The hospital would be liable for causing harm, and the parents would be upset that the experiment caused their child to die even faster than if he had received only life support.
This is why most doctors will not experiment on their patients.
44
The media have not done due diligence discussing this illness and the proposed treatment.
CNN interviewed a parent whose young child had supposedly benefitted from nucleoside therapy. Only that child had the TK2 mutation mentioned in this article, not Charlie's. Further research on TK2 led me to the following observation:
"Rarely, the disorder progresses slowly and affected individuals survive into adolescence or adulthood."
source: https://ghr.nlm.nih.gov/condition/tk2-related-mitochondrial-dna-depletio...
Since there is no double-blind study with nucleoside therapy, the child CNN featured might have well been one of the rare cases that survive. The therapy may have had little to do with the outcome. Where was Dr. Gupta?
CNN interviewed a parent whose young child had supposedly benefitted from nucleoside therapy. Only that child had the TK2 mutation mentioned in this article, not Charlie's. Further research on TK2 led me to the following observation:
"Rarely, the disorder progresses slowly and affected individuals survive into adolescence or adulthood."
source: https://ghr.nlm.nih.gov/condition/tk2-related-mitochondrial-dna-depletio...
Since there is no double-blind study with nucleoside therapy, the child CNN featured might have well been one of the rare cases that survive. The therapy may have had little to do with the outcome. Where was Dr. Gupta?
4
The heartbreaking truth here is that every party was reasonable.
No loving parent can reasonably be expected to give up all hope until all hope is entirely gone. Charlie--from the publicly-shown photos--didn't look like a ravaged, withered being from whom all life had fled. He looked like a sleeping infant, despite all the medical equipment keeping him alive. It's hard to image the parent able--despite the best attempts of medical professionals to argue their own point of view--to truly believe nothing further could be done.
If Charlie had received the experimental treatment, in all likelihood the only value would have been to further research that might some day benefit other children with his mutation. And many of the advances that have already, in so many areas of medicine, saved many many thousands have been achieved at the cost of an individual life that could not really be extended or improved.
And there should be no real comparison to the Terri Schiavo case. Despite the pronouncements of medical professionals, there was still some legitimate question as to whether she could still respond to loved ones, and her parents were prepared to assume all responsibility for her. Her husband was insisting that life support be withdrawn. Why did the courts feel he "owned" that right and it superseded the rights of her blood relatives willing to take on the burden of care? There's still more to that story but no one is likely to learn it.
No loving parent can reasonably be expected to give up all hope until all hope is entirely gone. Charlie--from the publicly-shown photos--didn't look like a ravaged, withered being from whom all life had fled. He looked like a sleeping infant, despite all the medical equipment keeping him alive. It's hard to image the parent able--despite the best attempts of medical professionals to argue their own point of view--to truly believe nothing further could be done.
If Charlie had received the experimental treatment, in all likelihood the only value would have been to further research that might some day benefit other children with his mutation. And many of the advances that have already, in so many areas of medicine, saved many many thousands have been achieved at the cost of an individual life that could not really be extended or improved.
And there should be no real comparison to the Terri Schiavo case. Despite the pronouncements of medical professionals, there was still some legitimate question as to whether she could still respond to loved ones, and her parents were prepared to assume all responsibility for her. Her husband was insisting that life support be withdrawn. Why did the courts feel he "owned" that right and it superseded the rights of her blood relatives willing to take on the burden of care? There's still more to that story but no one is likely to learn it.
3
As a father of four, this case was deeply sad. Even sadder, it was unnecessarily politicized. In the end, the parents allowed the voice of scientific reason to convince them of what is and isn't possible given all of the evidence.
I'll never understand why people react with hostility to science and scientists. Scientists are people with feelings and emotions, too. Science may not provide the comfort of religion, but it is superior to it in explaining our biological and physiological frailty.
I'll never understand why people react with hostility to science and scientists. Scientists are people with feelings and emotions, too. Science may not provide the comfort of religion, but it is superior to it in explaining our biological and physiological frailty.
62
The Columbia physician/scientist rendered a prognosis of outcome based on what? He had not treated a single child with Charlie's mutation. Yet he proclaimed that Charlie had a ten percent chance of benefitting from his therapy:
http://www.bbc.com/news/uk-england-london-40593286
Faced with such scientists I am not surprised that people mistrust them.
http://www.bbc.com/news/uk-england-london-40593286
Faced with such scientists I am not surprised that people mistrust them.
10
God watch over them all.
4
From 13 billion light years away?
3
I'm always dismayed when a heartrending story like this one becomes a platform for bias and hatred toward the Catholic Church and its leader, Pope Francis.
How about just sticking with the truth, VA Mike, and joining with all those people who truly grieve for this family and their dear child.
How about just sticking with the truth, VA Mike, and joining with all those people who truly grieve for this family and their dear child.
4
Very sad but sadder to prolong suffering. At that point it becomes about the parents and not about the baby.
18
While I have great sympathy and respect for the parents here, I am still struck by how likely many of the "mourners" of this child also fervent supporters of abortion. Why the difference in views between a baby in the womb vs. out of it in terms of respect for their life, even after the baby (fetus) would be viable outside the womb?
2
Dave, no one is a "fervent supporter of abortion." Many of us are fervent supporters of a woman's right to control her body. And most of us wish there was no need for abortion, ever--but, sadly, sometimes there is.
66
Actually there are plenty of us who are unapologetically fervent supporters of abortion. I do not think the knee jerk response to water down support for abortion and hand wring with maudlin rhetoric that it is always sad or terrible is helpful. There are many cases where abortion is the best choice and I'm proud to "fervently support" it then.
I have noticed one post that states' would there have been this outpouring of sympathy if the child had been brown or black' why on earth would you bring in what colour the child is.
This poster has obviously not done her research Great Ormond Street Hospital is one of the greatest hospitals in the world with the best doctors working there.
Many children from all over the world have treatment there ...in fact the British people donate millions of pounds to help many of these children whether they are from Africa or Asia ...the colour of there skin is not important it is about the welfare of the child.
Not a good time to play the race card.
This poster has obviously not done her research Great Ormond Street Hospital is one of the greatest hospitals in the world with the best doctors working there.
Many children from all over the world have treatment there ...in fact the British people donate millions of pounds to help many of these children whether they are from Africa or Asia ...the colour of there skin is not important it is about the welfare of the child.
Not a good time to play the race card.
35
I feel really bad for these parents who tried to do everything they could to help their infant son along with the hospital and numerous doctors for the last 11 months. If Charlie was born in the US, the pathetic for profit health insurance system would have pulled the plug long ago so Kudos to the UK. Charlie will no longer suffer when he returns home to a better place and I hope his parents will find peace and consolation as time goes by.
24
God bless little Charlie. What a trial his parents have been through. It does seem that there is truly nothing that can be done for this baby. As a mother, my heart goes out to his parents. But they have made the right decision. I wish them the good fortune of having another child, a healthy one.
9
Unfortunately I don't think having another child will be in the cards for them, they both carry the gene that affected Charlie. Very sad for them
2
I'm sorry they gave up.
2
You do not understand do you?
That GENETIC condition is 100% fatal in infancy
There is NO TREATMENT
The never-tested never-tried on this specific variation of the disease (which destroys the brain not just the muscles) is merely an experimental theoretical drug for a DIFFERENT variation of the disease (muscles only)
The infant had massive irreversible catastrophic brain damage after days of non-stop back in January.
Before the seizures happened the hospital had ask permission to import the unapproved untested drug from the US in a last ditch effort. The seizures happened before it could be tried
The brain is GONE.
THey are not 'giving up" -they are finally facing the reality that there is NO WAY to keep this infant alive other than staying on life support until he dies from an infection
That GENETIC condition is 100% fatal in infancy
There is NO TREATMENT
The never-tested never-tried on this specific variation of the disease (which destroys the brain not just the muscles) is merely an experimental theoretical drug for a DIFFERENT variation of the disease (muscles only)
The infant had massive irreversible catastrophic brain damage after days of non-stop back in January.
Before the seizures happened the hospital had ask permission to import the unapproved untested drug from the US in a last ditch effort. The seizures happened before it could be tried
The brain is GONE.
THey are not 'giving up" -they are finally facing the reality that there is NO WAY to keep this infant alive other than staying on life support until he dies from an infection
38
They didn't give up. They are lovingly and with great compassion refusing to let him suffer.
18
They absolutely didn't give up. Look at how hard they fought for that little boy. It's impossible to accurately state how painful it was for his parents to realize they truly had done everything they could. He wasn't going to get well. There is no cure. They will now be able to spend time with their little boy & say what they feel needs to be said. I'd say that's a painful look at an ugly reality—nowhere near 'giving up.'
8
How much is anyone justified to demand from a system that puts a floor under everyone?
4
As a parent of a child who was critically ill for the first months of her life (and fortunately, knock on wood, is well today), I ache for the Gard family. There were no good choices here. Everyone will have an opinion, but whatever side you take, cannot we commonly admire how deeply these parents love their child? That all children might be as adored as Charlie is…what a world that would be.
All my heart to you, Mr. and Mrs. Gard. May you find peace in time and in knowing that Charlie knew. He knew you loved him. Little as he is, your love was bigger.
All my heart to you, Mr. and Mrs. Gard. May you find peace in time and in knowing that Charlie knew. He knew you loved him. Little as he is, your love was bigger.
48
Parenting, like medicine, should first do no harm. Charlie's parents are so blinded by their love for this child, they turned into well-meaning agents of harm. Insisting on keeping alive an infant who cannot see, hear, move or even breathe amounts to the cruel imposition of life on a irreparably defective body that cannot live. In seeking to avoid the pain of losing their child, they lost sight of what was best for this impossibly handicapped baby. Palliative care was the most Charlie could hope for. May he have a painless death now that his parents have accepted the reality of his condition.
34
While it is painful for any parent to lose their child it is also important to accept our limitations. I can't help getting the impression that the parents are more absorbed with their love for Charlie, not Charlie.
25
I don't know how anyone can presume to know what is in a parent's mind or heart under these circumstances. Whatever we might think about their pursuit of treatment for their son's condition, I would not question their motives.
10
I do. The child was beyond hope and was suffering. The science was abundantly clear. Whatever was in their hearts, it was misguided, and not in the child's best interest.
5
In the Eastern religious traditions it is understood that some lives are not mean to be be long, from little Charlie to the children struck down by disease and accidents to the people we inevitably lose in auto accidents just before they graduate high school.
Here in the west we tend view death as the enemy of life,to be defeated at any cost (except if you're seen as an immoral person) and become emotionally exaggerated over these matters, like the legal wrangling, demonstrations and death threats over little Charlie and Terry Shiavo, whether it serves them or not.
Here in the west we tend view death as the enemy of life,to be defeated at any cost (except if you're seen as an immoral person) and become emotionally exaggerated over these matters, like the legal wrangling, demonstrations and death threats over little Charlie and Terry Shiavo, whether it serves them or not.
11
Go well, Charlie. Godspeed.
14
Why is death considered so horrible? Why is modern society so unwilling to just let death happen? Death is the inevitable consequence of life--for us, for all other living things. As a western culture, we believe that paying unlimited amounts of money to extend life is worth more than the quality of that life or the spread of disease to others as the result of that individual's life extension.
This child was born to die; we all are. Whether death comes at the end of a long and otherwise healthy life or at the beginning of a life that will be filled with pain and life preserving machines with no prospect of normality, it comes to all of us. Many times it is a blessed release given by our ever-present companion Death.
Our war against human death will destroy us and our planet.
These parents are considering only themselves, not what was and is best for their child.
This child was born to die; we all are. Whether death comes at the end of a long and otherwise healthy life or at the beginning of a life that will be filled with pain and life preserving machines with no prospect of normality, it comes to all of us. Many times it is a blessed release given by our ever-present companion Death.
Our war against human death will destroy us and our planet.
These parents are considering only themselves, not what was and is best for their child.
50
Your post was well said until the last sentence. Not necessary. You don't know what motivated the parents.
10
Ignoring your last sentence, because I'm not going to argue further.
As for everything else you said, I do agree with you. What I believe has been both a blessing & a curse is how we've treated death from the Victorian era to the present.
In Victorian times, people often died in the home, family members caring for them, and later, family members caring for & preparing the body for burial. No doubt there was great sadness, but the fact that people weren't sheltered from death likely made the unknown easier to comprehend.
As we moved away from that & funeral homes came in to play, there was one step that was removed. The person still died at home, but someone else handled the body.
Eventually, thanks to modern medicine, we've perfected the idea that youth doesn't have to end. I live in LA—you'd never guess how old people are in this town much of the time. Death happens behind closed doors in hospitals for most. Even those who say they wish to die at home are often unable to do so for a number of reasons. Family members can't handle what's happening because in many cases, doctors have saved the person & others before.
Is it any wonder we can't deal with the prospect of death? It is a taboo in society. We don't like to talk about it. We don't want to see it. We're so afraid of it, some even refuse to create a will or become an organ donor out of fear they'll be allowed to die.
It's regrettable that we struggle so much with death. We should be talking about it.
As for everything else you said, I do agree with you. What I believe has been both a blessing & a curse is how we've treated death from the Victorian era to the present.
In Victorian times, people often died in the home, family members caring for them, and later, family members caring for & preparing the body for burial. No doubt there was great sadness, but the fact that people weren't sheltered from death likely made the unknown easier to comprehend.
As we moved away from that & funeral homes came in to play, there was one step that was removed. The person still died at home, but someone else handled the body.
Eventually, thanks to modern medicine, we've perfected the idea that youth doesn't have to end. I live in LA—you'd never guess how old people are in this town much of the time. Death happens behind closed doors in hospitals for most. Even those who say they wish to die at home are often unable to do so for a number of reasons. Family members can't handle what's happening because in many cases, doctors have saved the person & others before.
Is it any wonder we can't deal with the prospect of death? It is a taboo in society. We don't like to talk about it. We don't want to see it. We're so afraid of it, some even refuse to create a will or become an organ donor out of fear they'll be allowed to die.
It's regrettable that we struggle so much with death. We should be talking about it.
6
Dr. Michio Hirano deserves censure and a rebuke from Columbia University's medical school, the American Medical Association and their British equivalent, and any relevant organizations pertaining to pediatrics, neurology, and critical care. There isn't an honest physician without an underlying religious bias that would support his conduct in this affair. Religion has no place in medicine or science.
Speaking of which medicine is science, but it's also an art. Part of the art, which is grounded in science by way of experience in similar cases, is knowing when to let go. This is an area where medical training often lags behind as part of the type A personality training necessary to produce stellar physicians instills an attitude that there's always another heroic effort that can be performed in the hopes of saving a patient with a particularly grim prognosis. Doctors aren't great at giving up and while that is in many ways an admirable quality one would choose to be present in their treating physician there has to be a balance with reality and prior experience. Few things are sadder than seeing a hospital staff administer CPR on a terminally ill elderly person with dementia and zero quality of life, breaking ribs in the process and making whatever time the patient may have left if they're successfully resuscitated even more painful and miserable.
Speaking of which medicine is science, but it's also an art. Part of the art, which is grounded in science by way of experience in similar cases, is knowing when to let go. This is an area where medical training often lags behind as part of the type A personality training necessary to produce stellar physicians instills an attitude that there's always another heroic effort that can be performed in the hopes of saving a patient with a particularly grim prognosis. Doctors aren't great at giving up and while that is in many ways an admirable quality one would choose to be present in their treating physician there has to be a balance with reality and prior experience. Few things are sadder than seeing a hospital staff administer CPR on a terminally ill elderly person with dementia and zero quality of life, breaking ribs in the process and making whatever time the patient may have left if they're successfully resuscitated even more painful and miserable.
29
The issue is why health options were being denied and who has the power to make those determinations--not whether the treatment would work. Treatments, experimental or not, often fail.
6
The highest court in the UK decided based on the physicians at the hospital. Here in the US some insurance company employee would make the decision. I prefer the UK method.
34
The story was heartbreaking as no parent should ever need to make life-death decisions for a child. I am a pediatric hospital chaplain and a former hospice chaplain. For these parents, the issue raised a multitude of issues that were not specifically related to medicine and ethics. Had I been involved with the medical team and the family, I would have helped both parties consider religious/spiritual concerns and the parents' experiences with grief and loss. The latter can impact how decisions are made and how information is processed. I hope that these parents can find closure rituals that can be meaningful to them and remember Charlie in a way that feels healing for them. Charlie was blessed to have such devoted and loving parents who did all they could to speak on his behalf.
24
It's a little too easy for people who have never faced decisions about their own children's deaths to say that Charlie's parents are doing the right (or wrong) thing. I don't know Ms. Yates or Mr. Gard, but I know if you haven't been in their shoes you have no right to judge one way or another. I watched my infant son die in a hospital intensive care unit and I know others who have been there, a place no parent ever wants to be. Every case is different, but in every case it's hard enough without the second-guessing by people speaking from their ivory towers and judging you with no evidence at all. Charlie's parents clearly did their best and what they thought was best for their son. They should all be left to find peace with themselves and their son. They owe nothing to the rest of us, including an explanation.
40
They'll be more fertile after this stress subsides. It is not healthy to fool oneself that magic will intervene to transcend a crippling congenital condition.
5
The Doctors, nurses, hospital officials, lawyers and judges who have worked on this have also done, according to their ethical lights, their legal and medical training, as well as their common human decency, their best.
Charlie Gard would've been dead long ago but for this community of people. Instead of being demonized by religious and political leaders, maybe we should also sympathize with each of them too.
Many of them are now at work trying to save other children. Probably waiting for the next parent to second guess not just their proposed treatment but their desire to save children. Waiting for the next politician who doesn't have a clue as to medical science and the hard art of medical practice. Waiting for the Pope to decide their jobs when the Catholic Church can't stop abusing kids.
We should feel for Charlie Garda parents and their personal grief.
We should applaud the rest for continuing on in spite of the abusive treatment this world has heaped upon them.
Charlie Gard would've been dead long ago but for this community of people. Instead of being demonized by religious and political leaders, maybe we should also sympathize with each of them too.
Many of them are now at work trying to save other children. Probably waiting for the next parent to second guess not just their proposed treatment but their desire to save children. Waiting for the next politician who doesn't have a clue as to medical science and the hard art of medical practice. Waiting for the Pope to decide their jobs when the Catholic Church can't stop abusing kids.
We should feel for Charlie Garda parents and their personal grief.
We should applaud the rest for continuing on in spite of the abusive treatment this world has heaped upon them.
23
So sorry for the parents but little Charlie, as he appeared in those awful pictures, had left his body some time ago.
12
And how would YOU know that for sure?
1
well they've been fighting the good fight for 8 months now. perhaps he left his body within that time. the courts are to blame. no one owns your child. this is absolutely the worst evidence that socialized medicine and socialism is wrong. the state does not own you and should never be allowed to hold your baby hostage. they had $2 mill donated for them to do what they felt was right for their child.
4
Yes, having some unnamed insurance company employee made the same decision is so much better, right? That's nonsense, give me socialized healthcare, it's much better overall.
9
This topic touches on a broader one: should public resources should be given at no limit for those who are ill?
In USA there is heated discussion about public resources for any who are diseased. Not discussed are those who are malnourished or starving because of being poor. Do we owe all of them a daily hot lunch?
I do not have an answer. I only ask, what should the public's obligation for all who need to be kept in good health? What are the limits? The means?
In USA there is heated discussion about public resources for any who are diseased. Not discussed are those who are malnourished or starving because of being poor. Do we owe all of them a daily hot lunch?
I do not have an answer. I only ask, what should the public's obligation for all who need to be kept in good health? What are the limits? The means?
7
@Victor: Does the "public" include only the middle class, or does it include multimillionaires and billionaires? Imagine how much money there would be to provide food and care for the poor if the ultra-rich were not so greedy!
Nobody needs 5 luxury homes and a $300 million yacht. Nobody needs a $25 million house in the Hamptons or in Aspen or wherever. NOBODY.
The concept of "need" has become twisted in favor of the rich (who have rigged the game in their own favor) and against those who actually do the work that makes the rich so rich. The poor and disadvantaged are considered to "deserve" their fate b/c at bottom the USA is still a Puritan country.
IMO, the obligation should be to tax the ultra-rich at about 90% so that there is money available for the good of ALL of us. For a billionaire to be down to his last $100 million would not make me feel sad for an instant.
Nobody needs 5 luxury homes and a $300 million yacht. Nobody needs a $25 million house in the Hamptons or in Aspen or wherever. NOBODY.
The concept of "need" has become twisted in favor of the rich (who have rigged the game in their own favor) and against those who actually do the work that makes the rich so rich. The poor and disadvantaged are considered to "deserve" their fate b/c at bottom the USA is still a Puritan country.
IMO, the obligation should be to tax the ultra-rich at about 90% so that there is money available for the good of ALL of us. For a billionaire to be down to his last $100 million would not make me feel sad for an instant.
9
Good parents will do whatever it takes to save a sick child, regardless of reality. Don't criticize the parents.
What will they do with the $1.7million they raised and ultimately, didn't need.
And what will Dr. Hirano be charging for his trans-continental flight, stay, and consultation--is that where the funds will go? Dr. Hirano is the one who ought to be criticized--he is the one who inappropriately applied animal research to a hypothetical human case. Ethics boards should investigate him.
What will they do with the $1.7million they raised and ultimately, didn't need.
And what will Dr. Hirano be charging for his trans-continental flight, stay, and consultation--is that where the funds will go? Dr. Hirano is the one who ought to be criticized--he is the one who inappropriately applied animal research to a hypothetical human case. Ethics boards should investigate him.
14
Without the Dr. Hiranos in the world, the state of medicine would remain stagnant. We spend billions on research to find solutions for diseases. Dr. Hirano should be celebrated for doing bleeding-edge research.
5
If not from animal research, where do you think medical treatments come?
3
I believe Dr Hirano was donating his services to review Charlie and testify in the U.K. The UK lawyers were also working pro bono.
Also, the parents have indicated that they would like to set up a foundation with those funds. So please, this accusation is a low blow.
I have had mixed thoughts about this case. My son was treated at GOSH - we spent 3 months living there and years of follow-up. The nursing and knowledge there is amazing. However, we found ourselves constantly having to stand up for our son, advocate and monitor. Top doctors can (and do) disagree and mistakes occur (and did). Our story has a happy ending, however. I wouldn't want to go against medical experts, but a parent should be able to get second opinions and undertake informed decisions. The legal wrangling was tragic - so much time lost. My prayers are with them now.
Also, the parents have indicated that they would like to set up a foundation with those funds. So please, this accusation is a low blow.
I have had mixed thoughts about this case. My son was treated at GOSH - we spent 3 months living there and years of follow-up. The nursing and knowledge there is amazing. However, we found ourselves constantly having to stand up for our son, advocate and monitor. Top doctors can (and do) disagree and mistakes occur (and did). Our story has a happy ending, however. I wouldn't want to go against medical experts, but a parent should be able to get second opinions and undertake informed decisions. The legal wrangling was tragic - so much time lost. My prayers are with them now.
5
The loss of one's child is so devestating, it is indeed unnatural. Orphans are those who've lost their parents, widows/widowers are those who've lost spouses. We have no word to describe a parent who loses a child. But, the proposed treatment for Charlie was also, in its own way, "unnatural".
I hope his parents find some comfort in knowing that in letting him go, they did the most loving and caring thing they could for him.
I hope his parents find some comfort in knowing that in letting him go, they did the most loving and caring thing they could for him.
17
Western infant mortality rates have historically been around 20 to 40%. It's only in the last century that medicine has advanced in the West to reduce infant mortality to < 1%.
2
But wait. Has Jeb Bush made his diagnosis yet?
14
"she said she was glad that she and her husband had brought their case, which she said raised important ethics issues and showed that her son’s life was not in vain."
I am sorry for them, but I think this quote shows the self-importance that drove them to believe that death should not happen to their child alone, even when he would likely never have been able to sustain his own life without continuing the great expense that has been put upon the British taxpayers for too many months. It also makes me feel sad that parents who accepted reality might feel that they inadequately loved their babies.
I am sorry for them, but I think this quote shows the self-importance that drove them to believe that death should not happen to their child alone, even when he would likely never have been able to sustain his own life without continuing the great expense that has been put upon the British taxpayers for too many months. It also makes me feel sad that parents who accepted reality might feel that they inadequately loved their babies.
20
they too were tax payers. when you pay for something you are entitled to it
4
Apparently you have never loved anyone, or you would understand.
5
The parents retain the doubt that earlier intervention with an experimental treatment method that has not been proven with sufficient results on mice or humans might have been effective "if only" it had been tried earlier for their child, is understandable. However, the clinical facts that are objectively determined by diagnostic tests that are not experimental, indicate otherwise. Established science tells us that any fulminating disease that causes death of brain tissue, muscle atrophy, and mitochondrial disruption, without any treatment of interruption of the disease process, cannot be interrupted or repaired for the purpose of sustaining life without extraordinary measures or for promoting any quality of life, because the disease process continues and, eventually, the only entity "alive and working" are the artificial machinery and drugs used to function for a body no longer capable of functioning. And even that is not for an indeterminate length of time, because, eventually, that path carries it's own complications that do not sustain life.
It is difficult enough for parents to work through their emotions of losing a sick child, it is cruel to give false hope, exploiting for various agendas that further impede the parents' ability to come to terms with the inevitable.
I have no doubt that the parents and the GOSH, under the NHS, have provided the best of care now w/a different goal: end of life care w/dignity. They established pediatric specialty care long ago.
It is difficult enough for parents to work through their emotions of losing a sick child, it is cruel to give false hope, exploiting for various agendas that further impede the parents' ability to come to terms with the inevitable.
I have no doubt that the parents and the GOSH, under the NHS, have provided the best of care now w/a different goal: end of life care w/dignity. They established pediatric specialty care long ago.
13
We are seeing among the comments here some examples of what Justice Francis referred to:when he said that "a pitfall of today's social media environment was that when difficult cases got prominent attention, commentators gave opinions without regard to fact."
One falsehood being pushed is that the British hospital asked the court to take Charlie off life support because of the cost of his treatment. They blame this on Britain's single-payer health care. They contend that if Charlie had been born in the United States, he would have been kept on life support and given experimental treatment because money is not an issue in the U.S. health care system.
The facts in court documents are that the British hospital's decision to take Charlie off life support had nothing to do with the cost. The hospital kept Charlie alive on life support for 11 months until medical experts came to the point of concluding that his brain damage was irreversible, that he could not be saved, and to continue with experimental treatment could cause him suffering and harm him
The fact is that if Charlie had been born in the United States, the decision would have been made by for-profit insurance companies. These companies could have denied his parents the coverage to keep Charlie on life support even for his first 11 months because he was born with a terminal illness, and therefore, a preexisting condition.
One falsehood being pushed is that the British hospital asked the court to take Charlie off life support because of the cost of his treatment. They blame this on Britain's single-payer health care. They contend that if Charlie had been born in the United States, he would have been kept on life support and given experimental treatment because money is not an issue in the U.S. health care system.
The facts in court documents are that the British hospital's decision to take Charlie off life support had nothing to do with the cost. The hospital kept Charlie alive on life support for 11 months until medical experts came to the point of concluding that his brain damage was irreversible, that he could not be saved, and to continue with experimental treatment could cause him suffering and harm him
The fact is that if Charlie had been born in the United States, the decision would have been made by for-profit insurance companies. These companies could have denied his parents the coverage to keep Charlie on life support even for his first 11 months because he was born with a terminal illness, and therefore, a preexisting condition.
46
Under the ACA, pre-existing conditions are covered.
4
Not for experimental treatments.
1
@ Allen: Yes, I thought preexisting conditions were covered under the ACA. I was thinking more of the American health care bill being voted on this week,
1
This is heartbreaking. I guess we must have these conversations from time to time as we try to figure out who we are and what is really important.
Prayers for all involved, especially those whose similar situations (thankfully) go un-noticed.
Prayers for all involved, especially those whose similar situations (thankfully) go un-noticed.
2
Doctor Trump misdiagnosed yet another medical situation.
If only he were this concerned about 25 million Americans for whom he is prepared to end medical insurance.
If only he were this concerned about 25 million Americans for whom he is prepared to end medical insurance.
36
Before 1974 when Dialysis became a benefit of Medicare, patients that presented for treatment at Stanford and many other institutions, had to have their cases heard by a panel empowered to give or deny treatment to that patient. Among the disqualifying co-conditions was age over 80, diabetes, cancer and a variety of other conditions. Inability to pay was not considered. When ESRD became a benefit of Medicare and resources expanded, the panel was disbanded and Dialysis was offered to all comers. But then, every decision to deny treament was as difficult, or more so, than this case because the patients were adults or older children, but it underscores the importance of such a panel which can unemotionally decide if the treatment would benefit the patient in the long term and, where resources were limited, was the best use for those resources. Over the years those panels were given the unfortunate title "Death Panels." This is what happened here and it came to a decision based on the facts and not on emotional, religious or unproved treatments that could do much more harm than good. Fortunately the parents, as grievous as this decision was, faced reality and protected their son from the harm that the other approach would have guaranteed and resulted in the same outcome.
6
Sorry, but "Death Panel" is an accurate term, whether you like it or not. Denying life saving treatment to someone just because they are over 80 is an act of genocide, no matter how much you want to dress it up.
3
A patient is 88 and brain dead. He has kidney failure. What would you and what would you call it? If you haven't been in the trenches, your pathetic moralizing has no meaning or value.
My deepest sympathies to the family. As for the people gathered outside the hospital, especially those shown sobbing in photos, I must ask: Where is your compassion and empathy for the thousands up on thousands of people across the world who are need help, including many others in your own country? This child's fate was written when the genes combined at his conception. There are people suffering all sorts of misfortunes that can actually be alleviated. Please put that energy to use to help those who can still be helped.
27
I find it disturbing that so many people are sobbing for a family they don't even know. FYI -- babies are dying everyday all around ithe world in Syria and other wartorn parts of our world. Where is the sympathy and tears for those babies?
I question the sanity of people who stand outside weeping -- we used to call these types professional mourners.
I question the sanity of people who stand outside weeping -- we used to call these types professional mourners.
4
This is one more example of the conflict between reason and emotion that characterizes the human condition.
9
Meanwhile, children are dying every day from lack of food, water and medical attention -- all of which can be provided with MONEY. Donate to charities like CARE and Doctors Without Borders. Write your representatives in congress to increase aid to distressed areas. Save lives that can be saved!
27
And fight the demonization of America's poor and the campaign to deprive them of the food stamps and medical assistance they need and deserve!
8
It's quite a shame, really, that the family will spend a lifetime of wondering what if. It seems clear that Charlie would never recover. The experimental 'treatment' would never have provided any increase in quality of life only increased his and his parents' suffering. Take Charlie home and let nature take its course. Treasure these moments now, not give them up to second guessing and anger.
15
He is dead - completely dead - the minute the ventilator stops
Nope -can't leave the hospital.
Nope -can't leave the hospital.
4
My heart goes out to the Gards. No parent should experience the death of a child.
14
But many do, and with more grace than was shown in London. How quickly the focus shifted from the healthy children in Birmingham or in numerous US cities whose lives were snuffed out by terrorists or over-reacting gun-wielding police or gang members. Those deaths were preventable; Charlie's condition was beyond human intervention.
3
These parents needlessly put their young child through many weeks of perhaps painful life support at the behest of a physician who wanted to do more research, a President who seeks to pander to his "evangelical base," and a Pope who countenances abuse of children by catholic priests. Little Charlie deserved better than this from his parents, Columbia University medical staff, the Pope and of course our national nightmare the President.
55
Oh stop it. If he's as dead as you insist what was the harm?
Stop politicizing the death of a child
Stop politicizing the death of a child
3
This whole fiasco has reaffirmed my opposition to socialized healthcare. When it came right down to it: Charlie's parents are his medical proxy, they had the money to bring the child to the US and treat him, and a US hospital admitted him to a clinic trial.
The only reason this did not happen immediately was because some bureaucrat(s) were on a power trip and the hospital held Charlie prisoner until significant brain damage naturally resulted. If socialized healthcare means the government is going to start making these type of calls instead of families; then Im fine without it.
The only reason this did not happen immediately was because some bureaucrat(s) were on a power trip and the hospital held Charlie prisoner until significant brain damage naturally resulted. If socialized healthcare means the government is going to start making these type of calls instead of families; then Im fine without it.
17
Has nothing to do with whatever you think is socialized medicine or the health care system in England. The decisions were made by the legal/judicial system of the UK based on laws that favor the child's rights over the parents. You are certainly free to disagree with that, I am not sure what I think of it, but were the England to have the same exact health care system as the U.S. this same decision would have been reached.
5
No the courts were Charlie's medical proxy .. and they ruled in favour of defending him against the actions of his parents.
That's the way it works in the UK. We actually care about the child, we don't just walk by on the other side and pretend th parent always does what is best for the child.
That's the way it works in the UK. We actually care about the child, we don't just walk by on the other side and pretend th parent always does what is best for the child.
9
Robert Davy: Writing as a Pediatrician and former Clinical EThics consultants, I point out here have been numerous similar cases in the US. The medical facts were the reality. The discussion was one of Medical Ethics.
There is no "Death Panel". Do read again the final comments in the article, quoting the Judge.
There is no "Death Panel". Do read again the final comments in the article, quoting the Judge.
20
While I never supported the parents cause on this, the one thing I will say is that their crusade deserves my and everyone's sympathy because it wasn't done out of an agenda, it was done out of their love for Charlie and to be the best parents they could be to him.
I may disagree with people, but I will never doubt their resolve if that is something that they truly believe.
I may disagree with people, but I will never doubt their resolve if that is something that they truly believe.
15
There is a difference between the root cause of a disease, the disease and the impacts of the disease.
Antibiotics treat infections by killing the bacteria that cause them. Once bacteria begin dumping toxins into the blood stream, the toxins begin to destroy the kidneys and liver. At that point, there is no antibiotic that can halt the toxins or reverse the damage.
The analogy holds true here. Once the damage had been done to the child's brain there was no treatment for the underlying disease that would reverse the damage.
The physicians in the UK gave the right advice, and the parents and child were spared further agony. T
The question in my mind was how much did the physicians in the U.S. know about the condition of this child that they would reach out to the parents?
Antibiotics treat infections by killing the bacteria that cause them. Once bacteria begin dumping toxins into the blood stream, the toxins begin to destroy the kidneys and liver. At that point, there is no antibiotic that can halt the toxins or reverse the damage.
The analogy holds true here. Once the damage had been done to the child's brain there was no treatment for the underlying disease that would reverse the damage.
The physicians in the UK gave the right advice, and the parents and child were spared further agony. T
The question in my mind was how much did the physicians in the U.S. know about the condition of this child that they would reach out to the parents?
14
not true. the other day doctors were able to reverse the affects of brain damage on a toddler who had lost oxygen and suffered brain damaged from being under water. medicine and miracles happen. the parents have the right to make decisions for their children. not some group of people who will go home tonight, eat their dinner and still have their loved ones with them.
2
So I guess we should just kill all people with brain damage, correct?
I had a major ski accident in 2011 & I am still effected by the resulting TBI. There is a difference between lack of oxygen or a hit to the head vs. a disease that does not have a cure, period. There are numerous factors in Charlie's medical case that makes it incomparable with what you mention.
For a medical 'miracle' to work, there has to be a treatment that's successful. Here, there isn't. He. Cannot. Breathe. Like at all. His condition is degenerative. This isn't a so-called 'simple' brain injury—which in itself is an oxymoron. The only question (& it's one that's seemingly more rhetorical than anything) is whether we'd be having this conversation now or say, six months from now.
For a medical 'miracle' to work, there has to be a treatment that's successful. Here, there isn't. He. Cannot. Breathe. Like at all. His condition is degenerative. This isn't a so-called 'simple' brain injury—which in itself is an oxymoron. The only question (& it's one that's seemingly more rhetorical than anything) is whether we'd be having this conversation now or say, six months from now.
Thank god that England has a court who sole interest is in children,not their delusional,attention-seeking parents, nor slavering politicians, or publicity-hungry religious officials. If only the US had judges who had as much integrity as shown by the UK court.
33
A wise loving parents' choice. Hold him close to say goodbye. He will be in your hearts forever. You did all that you could; your love knew no bounds. And love is eternal.
17
My sympathy for Charlie's parents is exceeded only by my respect and admiration for most wrenching decision they are likely to face in life.
9
Great Ormond Street Hospital is the UK's leading hospital for the care of seriously ill children. Its doctors are amongst the best in the world.
Yet a group of American professional pro-life protesters flew to my country with the express purpose of abusing those doctors and spitting in the face of my country.
What with your President, and people like these, America is not making many friends lately.
Yet a group of American professional pro-life protesters flew to my country with the express purpose of abusing those doctors and spitting in the face of my country.
What with your President, and people like these, America is not making many friends lately.
203
I am English and I agree with you...parents with sick children were being abused by these people and so were the staff.
It has been a very sad day all round.
It has been a very sad day all round.
20
I'm an American and I agree with you...disgusting behavior.
5
My prayers and thoughts will be for this couple to get through this heartbreak. I cannot imagine how hard it is to reconcile the medical facts with that sweet face and permit an action that will end his life. That they have had to endure this in the public eye and become pawns for various viewpoints is all the more awful.
16
Problems of life and death are hard. We can keep people alive on machines almost forever.
Jahi McMath's body is still kept going by machines at taxpayer expense in New Jersey three years after she was declared dead in California. Few people die in intensive care units now unless the attending physician gives the order to pull the plug.
Charlie Gard's parents made the right decision to let him die. He's already dead, unfortunately, in any way that matters. Anything further would just be an experiment, not treatment.
I hope this case gives others reassurance that doctors and hospitals (at least, most of them) do act ethically and with the interest of their patients in mind.
Jahi McMath's body is still kept going by machines at taxpayer expense in New Jersey three years after she was declared dead in California. Few people die in intensive care units now unless the attending physician gives the order to pull the plug.
Charlie Gard's parents made the right decision to let him die. He's already dead, unfortunately, in any way that matters. Anything further would just be an experiment, not treatment.
I hope this case gives others reassurance that doctors and hospitals (at least, most of them) do act ethically and with the interest of their patients in mind.
32
Sorry that ICU's are not killing off enough innocent and helpless human beings to make you happy.
I'm glad they came to their sense finally and stopped prolonging the agony for themselves.
14
Would there have been this great outpouring of sympathy if Charlie was a black or brown baby instead of blond-haired, white child?
Regardless, I find all this outside interference by the Pope and of course, Trump, to have done nothing but prolong the inevitable. God's will does not mean life support.
Regardless, I find all this outside interference by the Pope and of course, Trump, to have done nothing but prolong the inevitable. God's will does not mean life support.
13
AKJ...this is England not America..the British people donate millions of pounds so that children from Africa and Asia can have operations to make there lives better. That is what Great Ormond Street Hospital is all about.
Please do your research.
Please do your research.
13
People who can't swallow get aspiration pneumonia. Usually they can get better a time or two or three with strong antibiotics but the prognosis for long-term survival is zero. This child never had a chance, experimental treatment or no.
16
Ask not for whom the bell tolls; it tolls for thee, and for me. We all share the profound sadness brought by little Charlie Gard's story. Deepest condolences to father and mother; utmost contempt for anyone who would see Charlie as a chance for professional advancement, and even greater contempt and aversion to a Supreme Ignoramus who saw political opportunity in tragedy and seized upon it, most especially someone simultaneously campaigning to deprive uncounted other wee infants of access to medical care!
28
Then why is it not tasteless for you to seize upon this story as another opportunity to bash Trump, who was hardly involved in it at all? You don't actually care about the family and their child, unless it gives you an opportunity to bash Trump.
1
This baby should have never been kept alive. Selfish parents. And it cost somebody millions.
And all those who are bleeding hearts over it, go adopt these pathetic children wasting away in foster care!
And all those who are bleeding hearts over it, go adopt these pathetic children wasting away in foster care!
14
You are a lot harsh and a little wrong. The cost is not what you suggest. If it was in the US the bills would have been millions but in the sensible and efficient UK system the cost is built into the system and poor Charlie had no effect on the NHS budget and his parents weren't bankrupted and no insurer was financially hurt
9
I feel so sorry for them...they only wanted to help their son, the love of their lives. All parents who are good parents want the same...and the courts can be very unsympathetic. Thank you Dr. Hirano for trying to help them, for giving what you could so that they could find some peace with a very difficult decision. Now Charlie may rest in peace...and they can live again someday hopefully with another little boy who will remind them of their little boy, Charlie. God bless.
5
The courts were extremely sympathetic. they gave the parents many many chances to provide even the smallest bit of evidence to suggest there might be a way to save Charlie.
Dr Hirano did a great job of giving the parents false hope .. but never gave them any evidence that his treatment would work. the minute the court required him to come and give evidence in person he backed down and admitted his experimental 'treatment' would be a failure.
The UK courts deserve a lot of praise for they way they protected Charlie's interests, and perhaps Dr Hirano should look in a mirror and ask some serious questions of himself.
Dr Hirano did a great job of giving the parents false hope .. but never gave them any evidence that his treatment would work. the minute the court required him to come and give evidence in person he backed down and admitted his experimental 'treatment' would be a failure.
The UK courts deserve a lot of praise for they way they protected Charlie's interests, and perhaps Dr Hirano should look in a mirror and ask some serious questions of himself.
6
Ms. Yates and Mr. Gard have made one of the hardest decisions there is to make in life: that of deciding not to seek more medical care for their infant child. We know from what they did that they loved their little boy unconditionally and that they weren't willing to give up on him. We know too that being British citizens they were able to have the best possible care for Charlie without worrying about medical bankruptcy, losing their jobs while trying to care for Charlie, etc. While the outcome of this is sad what preceded it pointed up what's wrong with American medical care.
Charlie was entitled to the best possible care as long as doctors felt it was helpful. Care was not going to be ended when the insurance money ran out. Charlie's parents will have the chance to say goodbye to a much loved child. And they will not be in debt to the tune of hundreds of thousands of pounds or hounded by debt collection agencies. And there won't be questions about whether or not the care was adequate. No one had to hold a bake sale to pay for Charlie's care.
This child's short life was far more dignified than the lives of many ill Americans. We can learn much from how the British and others CARE for their most vulnerable citizens: the sick, the handicapped, the terminally ill, all cared for with no regard to income.
Mummy and Daddy loved him because he was their Charlie. That is one of the most precious gifts any human being can receive. Love.
Charlie was entitled to the best possible care as long as doctors felt it was helpful. Care was not going to be ended when the insurance money ran out. Charlie's parents will have the chance to say goodbye to a much loved child. And they will not be in debt to the tune of hundreds of thousands of pounds or hounded by debt collection agencies. And there won't be questions about whether or not the care was adequate. No one had to hold a bake sale to pay for Charlie's care.
This child's short life was far more dignified than the lives of many ill Americans. We can learn much from how the British and others CARE for their most vulnerable citizens: the sick, the handicapped, the terminally ill, all cared for with no regard to income.
Mummy and Daddy loved him because he was their Charlie. That is one of the most precious gifts any human being can receive. Love.
137
Finally the parents made the correct decision for their child. Now is the time to pray for all involved. Still it is necessary to follow the millions raised in this cause to ensure that it is used for right causes of which there are many, but the most important in my opinion is medical research to prevent such cases in the future for pre borns and their parents.
14
I'm truly amazed at those people, who know nothing of medicine, who felt it necessary to demonize the medical staff who have cared for this infant.
Why do so many people, who have no expertise, feel qualified to demonize others over issues in which they have no expertise?
Why do so many people, who have no expertise, feel qualified to demonize others over issues in which they have no expertise?
65
Michael Collins- The answer to your question is contained in one word: RELIGION.
"Their lawyer, Mr. Armstrong, suggested that the experimental therapy might have had more potential had it been tried when the parents first became aware of it late last year, but that it was now too late."
Yes, and if Charlie had been born perfectly healthy, he would have been...perfectly healthy. Suggestions that an experimental treatment not even developed for Charlie's condition might have helped him are unproductive and just help create regrets in the minds of his parents who now must put Charlie's tragedy aside (it will probably never be "behind them") and go on with life. I wish them well. Their lawyer should resist the temptation to publicly deal in "what ifs."
Yes, and if Charlie had been born perfectly healthy, he would have been...perfectly healthy. Suggestions that an experimental treatment not even developed for Charlie's condition might have helped him are unproductive and just help create regrets in the minds of his parents who now must put Charlie's tragedy aside (it will probably never be "behind them") and go on with life. I wish them well. Their lawyer should resist the temptation to publicly deal in "what ifs."
39
How incredibly sad. May the Gards find comfort in knowing that they fought for their son with all their might, in the face of all odds.
Peace to all.
Peace to all.
7
Parents will never let go. I can't fault them for that. In fact, they have my deepest sympathy.
I can fault all of those other people who felt this was their business--including the President. This poor child was apparently born without the capacity to live--there's nothing novel or unique about allowing his body to take the only natural course available to him.
Sometimes as a society we have to make decisions that are impossible for us to make as individuals. I can't think of a more poignant case than this one. But we should make those decisions in a reasoned, unbiased manner, based on the best information available to us. And then we must move on.
I can fault all of those other people who felt this was their business--including the President. This poor child was apparently born without the capacity to live--there's nothing novel or unique about allowing his body to take the only natural course available to him.
Sometimes as a society we have to make decisions that are impossible for us to make as individuals. I can't think of a more poignant case than this one. But we should make those decisions in a reasoned, unbiased manner, based on the best information available to us. And then we must move on.
78
It will be an ultimate act of love to let this poor child go - no more suffering. Nothing but sorrow and admiration for the bravery of the parents.
4
Nothing can ease the pain that his parents feel and will continue to feel.
However, they have done the right thing. Life is not simply a beating heart. Poor Charlie was dealt a disastrous hand in life and he will die without ever experiencing all that is wonderful about being alive. He never had a chance.
My condolences to his parents. May they get some peace in knowing that Charlie's suffering will end.
However, they have done the right thing. Life is not simply a beating heart. Poor Charlie was dealt a disastrous hand in life and he will die without ever experiencing all that is wonderful about being alive. He never had a chance.
My condolences to his parents. May they get some peace in knowing that Charlie's suffering will end.
31
It is hard for parents to accept that their child is not meant to live. Even acceptance of this reality does not lessen the pain.
3
It is well known we primates often deny the death of a child.
In fact, sometimes the child does survive a "hopeless" situation.
However, it is immoral and unethical to spend millions to put off the inevitable death of a doomed child when so many children around the world die from a lack of clean drinking water, or as the victims of war and genocide.
And in the real world, none of us gets to demand unlimited resources for our child, no matter how much we love that child.
These parents can fight as individuals to save their doomed child.
But the rest of us should not be forced to pay their bills.
In fact, sometimes the child does survive a "hopeless" situation.
However, it is immoral and unethical to spend millions to put off the inevitable death of a doomed child when so many children around the world die from a lack of clean drinking water, or as the victims of war and genocide.
And in the real world, none of us gets to demand unlimited resources for our child, no matter how much we love that child.
These parents can fight as individuals to save their doomed child.
But the rest of us should not be forced to pay their bills.
4
"We will have to live with what-ifs which will haunt us for the rest of our lives,” she told the court, her voice breaking. “We have not kept him alive out of selfishness.”
Absolutely impossible for any rational person to question the sincerity of this woman's comments. Shame on anyone whose comments or accusations contributed to this grieving mother feeling the need to make such as obvious and unnecessary statement.
Absolutely impossible for any rational person to question the sincerity of this woman's comments. Shame on anyone whose comments or accusations contributed to this grieving mother feeling the need to make such as obvious and unnecessary statement.
10
The Tragedy of Charlie Gard, and of his mother
"Mummy and Daddy love you so much, Charlie. We always have and we
always will and we are so sorry that we couldn’t save you." (Charlie's mother)
-Connie Yates, mother of Charlie Gard
Tragically, Charlie never had a chance for improvement, no matter how much he was loved or how valiantly GOSH tried to help him
survive. Charlie has been kept breathing by artificial means- a ventilator
which pushes air in and pushes it out of lungs which in turn, makes his heart
push oxygen through the vessels in his body... and which made the heart
monitor keep the electrical waves not be flat...Al of that could neither make the baby's muscles work, nor his brain function.
One day Charlie's mother will most likely come to the realization that she did not do what was in her son's best interest. She did not listen to those who told her truths that she did not choose to believe believing instead that she would be her son's saviour if she only pursued her agenda. The day will come when she will realize this truth. As a mother who watched her own daughter die, I can say this, and also tell her not to feel guilty. She really did believe that she was doing the best for wee Charlie. But like so much of our human certainties, I think she will see more clearly in the future. After all, no mother wants her child to die ...
Hindsight has always been a clearer route to understanding a dilema.
"Mummy and Daddy love you so much, Charlie. We always have and we
always will and we are so sorry that we couldn’t save you." (Charlie's mother)
-Connie Yates, mother of Charlie Gard
Tragically, Charlie never had a chance for improvement, no matter how much he was loved or how valiantly GOSH tried to help him
survive. Charlie has been kept breathing by artificial means- a ventilator
which pushes air in and pushes it out of lungs which in turn, makes his heart
push oxygen through the vessels in his body... and which made the heart
monitor keep the electrical waves not be flat...Al of that could neither make the baby's muscles work, nor his brain function.
One day Charlie's mother will most likely come to the realization that she did not do what was in her son's best interest. She did not listen to those who told her truths that she did not choose to believe believing instead that she would be her son's saviour if she only pursued her agenda. The day will come when she will realize this truth. As a mother who watched her own daughter die, I can say this, and also tell her not to feel guilty. She really did believe that she was doing the best for wee Charlie. But like so much of our human certainties, I think she will see more clearly in the future. After all, no mother wants her child to die ...
Hindsight has always been a clearer route to understanding a dilema.
9
An ocean full of sympathy to these parents.
26
The parents' efforts were due to their unconditional love for an infant that could not reciprocate, or indeed, make any of the usual adorable sounds or movements and expressions that prompt our feelings of love for babies. The parents are to be nothing but honored for their tireless efforts to give their son a meaningful, though not 'normal' but general standards, chance in life. Very few know what they're going through. Godspeed little Charlie. You are loved.
18
Thank you for your comments. Agree!
My understanding of the Pope's position was that Charlie should be allowed to continue all treatment until such time treatment was no longer curative. At that time, he should be cared for with dignity and support for end of life care and that the Vatican hospital he offered would be available to provide both.
This was the goal of care at GOSH for the months he was under their care and that is what they provided and offered. There was no need to uproot the child and the parents and fly them to either Rome or to the US.
Please see my comments about the article cited in these comments about when is a life no longer "worth" saving. All lives are worth saving until life no longer responds to efforts to save. Then that life is worth a dignified end of life care with dignity, because no life can be saved indefinitely when disease process prevents the preservation of life.
This was the goal of care at GOSH for the months he was under their care and that is what they provided and offered. There was no need to uproot the child and the parents and fly them to either Rome or to the US.
Please see my comments about the article cited in these comments about when is a life no longer "worth" saving. All lives are worth saving until life no longer responds to efforts to save. Then that life is worth a dignified end of life care with dignity, because no life can be saved indefinitely when disease process prevents the preservation of life.
4
My heart goes out to all involved in this case. I have not the slightest doubt that everyone involved wanted what they thought was best for the little boy. Particular thoughts are with his parent at this horrific time in their lives.
11
Too bad the hospital had to put up with the death threats by the friends of the parents of Charlie Gard. The disrespect of the parents should also be noted.
5
In my view, by far the best overview of the ethical issues here was presented by Julian Savulescu and Peter Singer in the ABC (Australian) on 14 July 2017:
http://www.abc.net.au/news/2017-07-13/charlie-gard-donald-trump-and-the-...
http://www.abc.net.au/news/2017-07-13/charlie-gard-donald-trump-and-the-...
2
The article is not convincing, nor is it based on established medical science and ethics. There is criteria established for determining when life is no longer worth prolonging with available technology in societies where technology can treat with artificial and extraordinary means of support, indefinitely, because of advances made. That was precisely why the criteria were established.
The criteria does not recognize the "structure" of a brain, or any other major vital organ. It recognizes the function of that organ. Medical science and ethics determined that the function of the brain was the critical determinator, because the brain function is what stimulates lungs to breathe, kidneys to function, hearts to beat and to pump the circulation to the vital organs. The function of the brain is in the brain tissue, not the brain structure. A person with no capacity for brain function may "look" alive, sustaining all semblance of functioning other vital organs that are actually functioning by artificial means that replace the function of the brain.
That is why the criteria for determining a life worth saving is MRIs to actually views the brain tissue; 3 EKGs in a row to determine brain function; and, sometimes, trial periods of the body's ability to sustain itself for a period of time w/o artificial means. These are universal criteria for medical science and ethics in modern societies. This criteria was present in Charlie's case.
The criteria does not recognize the "structure" of a brain, or any other major vital organ. It recognizes the function of that organ. Medical science and ethics determined that the function of the brain was the critical determinator, because the brain function is what stimulates lungs to breathe, kidneys to function, hearts to beat and to pump the circulation to the vital organs. The function of the brain is in the brain tissue, not the brain structure. A person with no capacity for brain function may "look" alive, sustaining all semblance of functioning other vital organs that are actually functioning by artificial means that replace the function of the brain.
That is why the criteria for determining a life worth saving is MRIs to actually views the brain tissue; 3 EKGs in a row to determine brain function; and, sometimes, trial periods of the body's ability to sustain itself for a period of time w/o artificial means. These are universal criteria for medical science and ethics in modern societies. This criteria was present in Charlie's case.
2
When medical science and technology made possible the means to sustain life on artificial means and extraordinary measures, medical science and medical ethos had to establish critera to help to decide when a life should not, could not, be maintained indefinitely in this manner. The decision to terminate this level of care has not been arrived at, subjectively.
Because the brain function is the determinator for sustainability of life, not the "structure" of it, when the brain function is gone, life is considered non sustainable. Brain function occurs in the tissue of the brain, not the structure. The brain tissue/function is responsible for stimulating lungs to breathe and hearts to beat and pump blood. Machines and medication can keep lungs breathing and hearts pumping for a time, but nothing can make a brain function once the tissue is dead, and, eventually, this kind of prolongation of a semblance of life presents their own complications, prolonging death, not life.
Therefore, the criteria for determining "death" or non sustaining life measures is: MRIs to view brain tissue; 3 EKGs in a row, for as many times as is necessary to conclude that there is a lack of sustainable brain activity; and, sometimes, trial periods off of artificial means of support.
Modern society uses these criteria and I have no doubt that GOSH based their medical plan of care on these scientific and ethical criteria.
Because the brain function is the determinator for sustainability of life, not the "structure" of it, when the brain function is gone, life is considered non sustainable. Brain function occurs in the tissue of the brain, not the structure. The brain tissue/function is responsible for stimulating lungs to breathe and hearts to beat and pump blood. Machines and medication can keep lungs breathing and hearts pumping for a time, but nothing can make a brain function once the tissue is dead, and, eventually, this kind of prolongation of a semblance of life presents their own complications, prolonging death, not life.
Therefore, the criteria for determining "death" or non sustaining life measures is: MRIs to view brain tissue; 3 EKGs in a row, for as many times as is necessary to conclude that there is a lack of sustainable brain activity; and, sometimes, trial periods off of artificial means of support.
Modern society uses these criteria and I have no doubt that GOSH based their medical plan of care on these scientific and ethical criteria.
2
Maybe the parents will change the $1.7 million gofundme into a fund for treatment of desperately ill children world wide.
57
I hope so...too.
1
I read they're going to donate it to research into his disease.
2
Haters gonna hate. It's not about Trump or the Pope. It's about devastated parents dealing with a tremendous tragedy and their right to make a decision for THEIR child. Most of us have no idea how hard a decision it is, and let us all pray that we never have to make such a decision.
11
In the UK and with respect to their children, parents don't have rights so much as they have responsibilities. The rights of the child always come first.
With no chance of improvement almost from the beginning, the legal and moral question has always been "what is in the best interest of the child?" The parent's have no right to insist on medical experimentation on the child, unless it could be shown to have a real chance of improving the child's life such that it became a life worth living.
The brain scans show clearly that this was not the case. The only medical professionals to suggest otherwise immediately changed their minds when presented with the brain scans.
It's all terribly sad, but in the end, the well-being of the child has prevailed over the entirely understandable need of the parents to want to keep their child alive at any cost.
With no chance of improvement almost from the beginning, the legal and moral question has always been "what is in the best interest of the child?" The parent's have no right to insist on medical experimentation on the child, unless it could be shown to have a real chance of improving the child's life such that it became a life worth living.
The brain scans show clearly that this was not the case. The only medical professionals to suggest otherwise immediately changed their minds when presented with the brain scans.
It's all terribly sad, but in the end, the well-being of the child has prevailed over the entirely understandable need of the parents to want to keep their child alive at any cost.
73
Under UK law a parent seeking to cause suffering to their child will be stopped from doing so, irrespective of how "devastated " they feel.
Parents do not own 'their' child. Sometimes children need protecting from their parents.
Trump sought to interfere with the British legal process .. for his own personal benefit. Criticising him for doing so is perfectly reasonable.
Parents do not own 'their' child. Sometimes children need protecting from their parents.
Trump sought to interfere with the British legal process .. for his own personal benefit. Criticising him for doing so is perfectly reasonable.
20
One would hope we would have the wisdom to stop using meaningless and inflammatory phrases "haters gonna hate."
Because, these dog whistles distracts us from the heart of the matter when it discusses the rights of parents to raise and care for the children.
In this case we need an adult conversation and realize that everyone has rights, even a child who cannot speak for themselves.
Which simply means there are limits, both legal and moral, to how any parent raises and cares for their child.
Because, when a child is harmed by actions - no matter how well intentioned - of its parents, others have a legal and moral right to speak for that child.
That is what wise and compassionate people expect from a civilized society.
Because, these dog whistles distracts us from the heart of the matter when it discusses the rights of parents to raise and care for the children.
In this case we need an adult conversation and realize that everyone has rights, even a child who cannot speak for themselves.
Which simply means there are limits, both legal and moral, to how any parent raises and cares for their child.
Because, when a child is harmed by actions - no matter how well intentioned - of its parents, others have a legal and moral right to speak for that child.
That is what wise and compassionate people expect from a civilized society.
13
When these inevitable situations occur it doesn't have to be Terri Schiavo all over again. This is terrible for these folks who did not want to lose their child. Why would anyone offer anything other than their deepest sympathy at a situation no one else ever wants to be in.
5
My heart goes out to Connie, Chris, and Charlie. There is nothing more any parent could have done for their child, and I hope one day the will see that. Big hugs to them over the coming days.
5
The parents should now donate the funds raised to send their son to the States to Great Ormand St Hospital for research on this disease, and encourage their supporters to follow suit. This would be the only appropriate way to end this sorry tale.
32
The unbelievable arrogance of the British medical community which would rather see a child die than allow parents to pursue a last ray of hope. And who are these 'doctors' who have the power to tell two parents that they are not allowed to take their own child out of the hospital to seek treatment elsewhere? Infuriating.
Shame on these charlatans. Shame on them.
Shame on these charlatans. Shame on them.
9
The same thing happens in the US. Insurance would not typically pay for an experimental treatment with no evidence base for an improved outcome.
10
Shame on the charlatan he would keep a child alive with no hope of a decent quality of life. Shame on the charlatan doctors in the U.S. who played games with this family for months, offering them hope that was never really there to begin with.
22
OAKWOOD: There is a point at which extreme parental care becomes child abuse. The tabloids are full of stories of ostensibly caring parents who do horrible things to their children. The medical establishment and the courts are there to protect the children and sometimes it is best to let nature take its course.
4
what is wrong with the UK that they would prevent these parents from doing all they could to save their child? it is shameful and disgusting. the parents should renounce their citizenship and move to the US.
6
These parents would have been bankrupted by now in the US. The hospital did all it could do for the child.
10
Why? U.S. courts intervene in medical cases and call for the life support to be removed too. Yes, courts often side with the parent's wishes, but not always, and why should they?
8
Doctors have to face attitudes like yours all the time, particularly with the elderly in intensive care units. Today machines can keep people "alive" almost indefinitely. And many families insist that doctors and hospitals do exactly that. At tremendous cost and to no good end.
Charlie Gard has a disease that has already killed him, in effect. Time to let him die.
(I don't blame Charlie Gard's parents for what they did. It can take time to sort these issues out.)
Charlie Gard has a disease that has already killed him, in effect. Time to let him die.
(I don't blame Charlie Gard's parents for what they did. It can take time to sort these issues out.)
8
Insistence on futile medical treatment by patients and families at public expense should be stopped.
29
The insistence on pointless treatment that causes suffering to a child should be stopped.
The expense is irrelevant. Even if parents have unlimited funds they should still be stopped from harming their own child.
The expense is irrelevant. Even if parents have unlimited funds they should still be stopped from harming their own child.
4
The family raised funds independently, so this would not have been at the public expense. The decision was made not because of financial considerations but because of what was right for Charlie and his quality of life.
4
It was not public expense, the money had been privately arranged. But there is a social ethical issue regarding creating a private market for ineffective treatment, which robs society as a whole of personnel and resources which could be used more effectively by others.
This is the crux of the difference between unfettered capitalism and social democracy. In the former, you can spend your money in any fashion, with no regard for the commonweal, in the latter, there is a balance between personal wishes and commonweal.
We seem to have a significant portion of the population who need to review their civics courses, and understand what government is about.
This is the crux of the difference between unfettered capitalism and social democracy. In the former, you can spend your money in any fashion, with no regard for the commonweal, in the latter, there is a balance between personal wishes and commonweal.
We seem to have a significant portion of the population who need to review their civics courses, and understand what government is about.
3
There is a villain in the piece, and his name is Michio Hirano. For all those who were innocently involved - the caregivers at Great Ormond Street Hospital, the parents, and above all the child - we can have nothing but sympathy and sorrow.
24
I don't see Dr. Hirano as a villain, but as a physician/researcher who gave an opinion before he had a full understanding of the child' s condition.
The parents sought publicity by cresting a public funding campaign.
No villains here but many ill-considered opinions.
My sympathy to Charlie, his parents and also all of Charlie's caregivers throughout his time at Great Ormond.
The parents sought publicity by cresting a public funding campaign.
No villains here but many ill-considered opinions.
My sympathy to Charlie, his parents and also all of Charlie's caregivers throughout his time at Great Ormond.
3
maybe not a "villain", but a doctor in Dr. Hirano's shoes should choose his words carefully and find out as much as possible about the patient before speaking in cases like these.
6
I agree Dr. Hirano is not a villain, but rather a doctor who should have used more professionalism. He should not have offered false hope or a medical opinion without first consulting with Charlie's doctors and seeing Charlie himself. Others in higher positions commented on helping Charlie, but not saying they could fix him. They said that they would take him. I applaud the Gards in the difficult but correct decision they have made. Charlie was one loved little boy. I hope their attorney and the Gards stop saying "time, and it's now too late" as if GOSH wanted to delay any treatment that would work. He was too far gone and the treatment was never going to help, and never been tested on someone in Charlie's case. The treatment would have always been too late and with the same outcome. GOSH looked into it then as did Dr. Hirano but then Charlie had seizures. That is not any person's fault. It is only the fault of the disease.
May the parents find comfort and peace and realize in time, all wanted what was best for Charlie.
May the parents find comfort and peace and realize in time, all wanted what was best for Charlie.
4
They have all my sympathy, a child's death is always to be mourned. I hope the money they're donating to research on the disease will help other babies.
5
May Charlie rest in peace as God welcome's him to everlasting life.
2
Rest now in the arms of the angels, Sweet Charlie Gard. Sleep peacefully now, for all Eternity. You are loved completely by your devoted parents, family, and the entire universe.
Sweet dreams, darling Charlie.
Sweet dreams, darling Charlie.
2
I feel for these parents. They just did what any parent would do for their child, and that is fight to these end of rationality for their kid. Love does this to a person. They are young and heartbroken and did what they felt was right.
But life just does not work out in the ways we expect, and I commend their courage in letting go of their precious newborn who simply does not have a chance at a decent life. It show a tremendous leap in true love and parenting for these two people.
The true art pf being a good parent is realizing that, as Gibran so beautifully states:
Your children are not your children.
They are the sons and daughters of Life's longing for itself.
They come through you but not from you,
And though they are with you yet they belong not to you.
May you both find peace and be blessed with perhaps another opportunity to be parents, as you have exhibited that you are indeed very good ones
But life just does not work out in the ways we expect, and I commend their courage in letting go of their precious newborn who simply does not have a chance at a decent life. It show a tremendous leap in true love and parenting for these two people.
The true art pf being a good parent is realizing that, as Gibran so beautifully states:
Your children are not your children.
They are the sons and daughters of Life's longing for itself.
They come through you but not from you,
And though they are with you yet they belong not to you.
May you both find peace and be blessed with perhaps another opportunity to be parents, as you have exhibited that you are indeed very good ones
58
What a tough year it's been for everyone involved, all of whom I am sure had the best of intentions.
Some of this conflict I attribute to how modern medicine has reduced "human life" to a series of biological processes, complex systems, and body parts. Many doctors are unwilling to look beyond their area of specialty and ask themselves how does what I am proposing impact this PERSON and the people who love this person?
Human life is far more than a sum of one's parts or interaction of complex biological systems. Until the medical profession re-integrates itself to treat the whole person, these kinds of misunderstandings and unmet expectations will continue to haunt those who must make difficult choices about their loved ones.
Some of this conflict I attribute to how modern medicine has reduced "human life" to a series of biological processes, complex systems, and body parts. Many doctors are unwilling to look beyond their area of specialty and ask themselves how does what I am proposing impact this PERSON and the people who love this person?
Human life is far more than a sum of one's parts or interaction of complex biological systems. Until the medical profession re-integrates itself to treat the whole person, these kinds of misunderstandings and unmet expectations will continue to haunt those who must make difficult choices about their loved ones.
8
Yet another reason to keep lawyers, politicians )and insurance companies) out of decisions that should be made only between families and their doctors, even if that means that the most humane thing to do is to let Mother Nature takes its course.
Rest in peace, little Charlie.
Rest in peace, little Charlie.
10
Sohio, the lawyers only became involved because the parents sought to do things that the best doctors in the UK believed would harm the child.
If the UK that is precisely what the courts are for. It appears we place a higher premium on caring for the child than the USA.
Many commentators are suggesting the parents 'own' the child and are entitled to do whatever they like with it. But there is no practical difference in the right to experiment on your child and the right to abuse, or to prostitute your child. Those who are so aggressively claiming the parents are the sole arbiters would be the first to demand the government and the law intervened to stop child abuse. Such people are hypocrites of the first order
If the UK that is precisely what the courts are for. It appears we place a higher premium on caring for the child than the USA.
Many commentators are suggesting the parents 'own' the child and are entitled to do whatever they like with it. But there is no practical difference in the right to experiment on your child and the right to abuse, or to prostitute your child. Those who are so aggressively claiming the parents are the sole arbiters would be the first to demand the government and the law intervened to stop child abuse. Such people are hypocrites of the first order
7
But if the family and their doctors are at odds who makes the decision then, particularly when a child is involved? I don't have an answer for that but families and doctors disagree every day about care... who is supposed to be the mediator? Who gets the final say...
Yes, in England the parents were not allowed to take the child home or to another hospital because the doctors and government know best. Treatment options and cost aside, the parents apparently have little choice in the treatment of their child.
The child has suffered too long already. He cannot voice an opinion in his own case. But surely he would be ready to accept nature's course, however heart breaking.
The parents had invested all this time and effort to bear a child and had hopes for his future.
Still this child is one of many, perhaps thousands that are suffering and may be lost, due to illness, famine or war.
Their voices should be heard as well, and we as a community should reach out to those who can be helped and those whose lives can be made better through our efforts and to their best abilities.
The parents had invested all this time and effort to bear a child and had hopes for his future.
Still this child is one of many, perhaps thousands that are suffering and may be lost, due to illness, famine or war.
Their voices should be heard as well, and we as a community should reach out to those who can be helped and those whose lives can be made better through our efforts and to their best abilities.
41
This is terribly sad, and I'm so sorry for the parents. But I'm so relieved that they've come to this conclusion. People like the Pope and Donald Trump really didn't help matters by interfering in a situation they clearly didn't understand.
42
All good wishes go out to this family struggling to come to terms with such a great tragedy.
6
Sadly, farvtoo many will see this tragedy as an example that the government should have no right in interfering in how parents raise and care for their child.
The basic flaw in this argument is that everyone, even a child has rights.
So, when the parents of a child inflict pain and needless suffering upon their child and when no other family member will stand up for that child, it is up to you and me, through our government, to speak for that child.
Think about that.
The basic flaw in this argument is that everyone, even a child has rights.
So, when the parents of a child inflict pain and needless suffering upon their child and when no other family member will stand up for that child, it is up to you and me, through our government, to speak for that child.
Think about that.
65
I have one daughter, and my wife had 3 miscarriages, and we had to abort one pregnancy at 19 weeks due to Trisomy-18 detection.
Although each parent wants to nurture and keep their children, this family is extremely selfish in their quest to have kept and on keeping an extremely sick child on life-support at great expense to the society at large: in England, it is the socialized medical services paying for all this EXPENSIVE care for a child who would not have functioned independently even if the care was provided earlier and will, regrettably, function even less today.
I find it disgusting and in very poor taste that this family is parading themselves and their cause on news media and what is even more repulsive is the media keeping their story in circulation.
This story needs to END here and now. There are millions and millions of well functioning persons on this world on whom the scarce resources of this world must be expended.
I miss my daughter, it was a daughter whom we aborted on the advise of doctors and geneticists, who would have been born with Trisomy-18. I buried her myself and I understand the loss of a kid - before someone tries to judge me in here - but that was a good thing for she would potentially have suffered in this world.
Although each parent wants to nurture and keep their children, this family is extremely selfish in their quest to have kept and on keeping an extremely sick child on life-support at great expense to the society at large: in England, it is the socialized medical services paying for all this EXPENSIVE care for a child who would not have functioned independently even if the care was provided earlier and will, regrettably, function even less today.
I find it disgusting and in very poor taste that this family is parading themselves and their cause on news media and what is even more repulsive is the media keeping their story in circulation.
This story needs to END here and now. There are millions and millions of well functioning persons on this world on whom the scarce resources of this world must be expended.
I miss my daughter, it was a daughter whom we aborted on the advise of doctors and geneticists, who would have been born with Trisomy-18. I buried her myself and I understand the loss of a kid - before someone tries to judge me in here - but that was a good thing for she would potentially have suffered in this world.
94
A dear friend was in a situation very similar to yours. After 2 miscarriages & 1 daughter, she was pregnant again. However, 2nd trimester screenings showed her son had Trisomy 18 and she was advised to have an abortion before the pregnancy advanced too far. Abortion wasn't an option for them so they chose to fight for their child & give him the best life possible regardless.
Doctors are amazing but they aren't omniscient. In her 3rd trimester the doctors reversed their diagnosis. In the end, they were grateful for not giving up. What's the relevance of their experience to Charlie Gard's parents? It's hope. My friend, like the Gards, chose to go on hoping for something better for their child than the doctors had predicted and in someone greater than the doctors . You chose not to (even though these screenings/markers come with a "not 100% accurate" caveat). From where I stand I don't think your decision was any more noble.
My friend gave birth to a perfectly healthy baby boy at 36 weeks after the Trisomy 18 diagnosis. Were the markers wrong? Was it a miracle? All I know is that he turns 2 in November & from the initial diagnosis, only faith & hope made this outcome possible. If my friend & her husband had aborted their son, there would've been no birthdays to speak of & the 'what ifs' which others are able not to think about would've torn them apart, much like it would have killed the Gards not to try. Life isn't about $$ and cents. Have some compassion and understand.
Doctors are amazing but they aren't omniscient. In her 3rd trimester the doctors reversed their diagnosis. In the end, they were grateful for not giving up. What's the relevance of their experience to Charlie Gard's parents? It's hope. My friend, like the Gards, chose to go on hoping for something better for their child than the doctors had predicted and in someone greater than the doctors . You chose not to (even though these screenings/markers come with a "not 100% accurate" caveat). From where I stand I don't think your decision was any more noble.
My friend gave birth to a perfectly healthy baby boy at 36 weeks after the Trisomy 18 diagnosis. Were the markers wrong? Was it a miracle? All I know is that he turns 2 in November & from the initial diagnosis, only faith & hope made this outcome possible. If my friend & her husband had aborted their son, there would've been no birthdays to speak of & the 'what ifs' which others are able not to think about would've torn them apart, much like it would have killed the Gards not to try. Life isn't about $$ and cents. Have some compassion and understand.
3
Next up - the Charlie Gard multi-million dollar law suit. My heart goes out to the grieving mother, but something else has been driving this case and I think we'll soon find out what. This whole thing is a tragedy of Greek proportions including the bumbling by the Pope and Donald Trump, the father's public tantrums and Charlie's calm little face. The only ones it was really about were mother and child.
7
Molly, there will be no lawsuit. the parents just publicly accepted that the doctors are correct.
a) that removes any grounds for a lawsuit
b) it means they finally escaped from the prison put around them by the self-serving politicians and religious extremists and instead chose to do what is best for their child.
They will of course grieve, probably for some long while, but they are unlikely to dishonour the child's memory with lawsuits.
a) that removes any grounds for a lawsuit
b) it means they finally escaped from the prison put around them by the self-serving politicians and religious extremists and instead chose to do what is best for their child.
They will of course grieve, probably for some long while, but they are unlikely to dishonour the child's memory with lawsuits.
4
It's hard enough to let your children go as they grow up and pull away, but it is sheer agony to have to let them go like this. That so many people have given these parents false hope can only make the situation that much harder. From now on, I hope they can find a room without an Internet connection and spend whatever time they have left with their son without the rest of us looking at them.
14
So sad. However, it's past time for the parents to let go and end Charlie's pain and suffering.
26
Very sad for the Gard parents.
Donald Trump had no business trying to manipulate and schmooze these parents. Totally taking advantage of a situation he had no clue about to make himself look "good" as if to once again pat his own back, the good guy.
This is a child, struggling parents, who need support. Not Trump schmoozing. An embarrassment from America.
As a healthcare professional, and on behalf of other American health professionals, we find Donald Trump's interference in this very sad situation appalling.
Donald Trump had no business trying to manipulate and schmooze these parents. Totally taking advantage of a situation he had no clue about to make himself look "good" as if to once again pat his own back, the good guy.
This is a child, struggling parents, who need support. Not Trump schmoozing. An embarrassment from America.
As a healthcare professional, and on behalf of other American health professionals, we find Donald Trump's interference in this very sad situation appalling.
226
I agree, MIMA. This was a heart-rending case, and the parents deserved much sympathy. The last thing they needed was Donald Trump giving his bigmouthed opinion on their child and their family's unspeakable tragedy.
And while I very much admire Pope Francis, he had no business weighing in on this either, although I believe that his actions, unlike Trump's, generally come from a place of compassion and goodwill.
And while I very much admire Pope Francis, he had no business weighing in on this either, although I believe that his actions, unlike Trump's, generally come from a place of compassion and goodwill.
17
I think that Trump and the US congress inserting themselves into it was one of the most disgusting things I have seen for a while. There was no real compassion there, just political point grabbing.
21
Trump was trying to score points for seeming humane, while at the same time tryingv to deny adequate healthcare to millions of persons, many of them children, in his own country.
28
Such an incredibly difficult time for the parents and medical staff involved. No easy answers made even harder by it playing out on the world stage. I send nothing but support to Charlie's parents and caregivers. Everyone did the best they could for this sweet boy.
42
Rayme the parents and the doctors did indeed do their best for this little boy.
But you are incorrect to say everybody did their best for him. Unscrupulous politicians and extremist religious protesters callously used this little boy for their own ends, completely ignoring what was best for him, and not caring one jot about him.
They should never be forgiven for their actions.
But you are incorrect to say everybody did their best for him. Unscrupulous politicians and extremist religious protesters callously used this little boy for their own ends, completely ignoring what was best for him, and not caring one jot about him.
They should never be forgiven for their actions.
6
Sad that the British government stalled and delayed this case for 6 months until there was a diminishing prospect of benefit for any experimental therapy for this baby. This was the parents' decision to make.
This case exposes the danger of giving government monopoly control over a nation’s health care system. It creates a multi-billion dollar conflict of interest between the government and patients. The cold reality is that under a national government-controlled health care system, the government has a vested interest in seeing that patients with advanced and terminal illnesses die as quickly and as cheaply as possible.
This case exposes the danger of giving government monopoly control over a nation’s health care system. It creates a multi-billion dollar conflict of interest between the government and patients. The cold reality is that under a national government-controlled health care system, the government has a vested interest in seeing that patients with advanced and terminal illnesses die as quickly and as cheaply as possible.
9
Or you can entrust your medical care options to a panel of insurers who determine that based on your pre existing condition and contractual agreements there is no obligation to provide you with treatment. Single payer for all!
13
As opposed to a private system where benevolent private insurers just love to give money away?
15
And in a market-based system, the insurers have a vested interest in seeing that patients with advanced and terminal illnesses die as quickly and as cheaply as possible. Luckily, the ACA got ride of lifetime caps, so those insurers keep paying out. They'd surely like to get rid of those caps, though, so they can bring medical debt back to the levels it should be at, right?
When a child's own cells can't produce the necessary products to function, that child will not live.
When a child's own cells can't produce the necessary products to function, that child will not live.
17
It's a difficult time and I feel so sorry for these parents but it is time to face reality.
41
There is something sick about parents (and devoted fans) who simply can't let go. It is certainly a tragedy, but tragedies happen, and we have to have the maturity to acknowledge them. There are VASTLY many more infants in the world who are sick, and CAN be helped. The world should focus its attention on them, and let these parents deservedly grieve.
146
I have sympathy for the parents suffering. Because of the parent's grief they are unable to see that an over treated death is a disrespectful & undignified death.
5
I can understand yet disagree with the devoted parents who cannot let go.
I have nothing but contempt for the "fans". The extremists who flocked to use and abuse this child and his parents for their own ends, who threatened death to the doctors who cared for the child.
I have nothing but contempt for the "fans". The extremists who flocked to use and abuse this child and his parents for their own ends, who threatened death to the doctors who cared for the child.
8
This is going to make England look so, SO bad...
The hospital and the judges who did this may come to regret this decision.
To do everything to "Protect and save human lives?"... NOT English doctors, apparently.
The hospital and the judges who did this may come to regret this decision.
To do everything to "Protect and save human lives?"... NOT English doctors, apparently.
5
This is a comment born of ignorance. The staff at Great Ormond Street Hospital would ALWAYS put the life of the child first. They are dedicated to treating the sickest of children from around the world. In this case their decision was made entirely on medical grounds and not on some fanciful notion of miracle cure or predatory praying. The judges are called upon very rarely and are rightly reluctant to go against the views of those medical professionals who are treating the patient
8
"Protect' human lives. The courts believed it was in the best interest of Charlie to make this decision to protect what quality of life he had left. You are certainly welcome to disagree with that, but the decision based on all accounts was made out of compassion and on the advice of doctors in England and America.
11
Did you miss the part where the parents made the choice?
4
I feel nothing but sympathy for this family. I hope that they can find peace.
48
Dr. Hirano has a lot to answer for.
This case has been in the UK press since January & more has gone on than the US media has reported.
Back in December/early January NHS was willing to send the infant to the US for Hirano to experiment upon because there was a very teeny tiny unknown chance it might help.
While the parents were raising the money to go, the infant suffered nearly constant seizures for many days. Scans showed irreparable brain damage.
Due to the irreparable brain damage, the NHS refused to send the infant to be used as a lab specimen for pointless & painful experiments. (Best interest of the child even if it put paid to Hirano's hoped-for 1st time experiment)
Hirano had never seen the actual scans & labs but kept claiming his experiment might work to some (unknown & unspecified) degree.
Back in April/May Hirano was told or shown the brain scans & admitted to the Court (by phone) that his experiment would not work as the brain damage was too severe.
Hirano still kept churning the waters in the hope of getting a lab specimen for his experiments -even if pointless for the infant in the end. Kept suggesting that who knows? - kept the parents grasping at straws, refusing to face reality & the court fight going.
Last week the UK court called his bluff. Told him to fly over, look at the scans & examine the infant.
Hirano went & caved - the UK Drs are right
NO TREATMENT HAS HELPED THIS SPECIFIC VARIATION OF THE ILLNESS.
IT IS 100% FATAL
This case has been in the UK press since January & more has gone on than the US media has reported.
Back in December/early January NHS was willing to send the infant to the US for Hirano to experiment upon because there was a very teeny tiny unknown chance it might help.
While the parents were raising the money to go, the infant suffered nearly constant seizures for many days. Scans showed irreparable brain damage.
Due to the irreparable brain damage, the NHS refused to send the infant to be used as a lab specimen for pointless & painful experiments. (Best interest of the child even if it put paid to Hirano's hoped-for 1st time experiment)
Hirano had never seen the actual scans & labs but kept claiming his experiment might work to some (unknown & unspecified) degree.
Back in April/May Hirano was told or shown the brain scans & admitted to the Court (by phone) that his experiment would not work as the brain damage was too severe.
Hirano still kept churning the waters in the hope of getting a lab specimen for his experiments -even if pointless for the infant in the end. Kept suggesting that who knows? - kept the parents grasping at straws, refusing to face reality & the court fight going.
Last week the UK court called his bluff. Told him to fly over, look at the scans & examine the infant.
Hirano went & caved - the UK Drs are right
NO TREATMENT HAS HELPED THIS SPECIFIC VARIATION OF THE ILLNESS.
IT IS 100% FATAL
308
This is the exact issue. The best care for Charlie would have been palliative care months ago. I am curious as to when that was originally offered. My suspicion is that GOSH care teams probably worked with the parents on this for months prior to that February request to take the baby off of life support. Charlie has been dying all along and the narrative that it is "too late" is incorrect. Very sad case.
14
I have just learned of Charlie's case, like many Americans, only recently. I had not read before that in December 2016 the UK NHS had offered to send Charlie to the United States for this experimental treatment, nor that immediately afterwards he suffered multiple seizures which rendered the trip useless except to provide a guinea pig. Thank you for that information.
5
Indeed. One wonders what could have attracted Dr Hirano to this case and the parents with $1.6m of donations to spend.
4
You can provide sympathy and understanding for the parents and still think they are wrong to keep a severely damaged child alive. They seem to have a lot of love to give. Once this is over and the press leaves them alone they could adopt a baby.
The world is full of children who need caring parents. The focus of this story has been on one doomed child. The best tribute for Charlie might working to find permanent homes for kids without families. All them public energy that went into this case could be channeled to help more than one kid.
The world is full of children who need caring parents. The focus of this story has been on one doomed child. The best tribute for Charlie might working to find permanent homes for kids without families. All them public energy that went into this case could be channeled to help more than one kid.
89
I'm dismayed that this needs saying, but I agree that it absolutely does unfortunately
3
My sister died at age 4 months, a great tragedy, and my heart goes out to Charlie's devastated parents. I am also very sad that much of the discussion surrounding Charlie's loss did not provide clarification of why Charlie suffered this fate. The molecular biology of mitochondrial disease is complex. The great majority of fetuses afflicted with substantial mitochondrial malfunction are spontaneously aborted very early in pregnancy, before pregnancy is even recognized. Conception is a hopeful gesture toward eternity, a hope that is sometimes dashed. So very, very sorry.
69
Sadler is talkthe by rot - obviously everyone in the UK have all manner of rights.
GOSH has come out badly in this - running to the courts to bar treatment.
Ultimately is the child a custodian of the parents or a ward of the State? Ask yourself that question because one is rooted in western tradition of freedom and the other illiberal and totalitarian.
GOSH has come out badly in this - running to the courts to bar treatment.
Ultimately is the child a custodian of the parents or a ward of the State? Ask yourself that question because one is rooted in western tradition of freedom and the other illiberal and totalitarian.
I'm so very sorry.......
No one should have to bury their baby.
At this time, I hope we can all unite in our sympathy and support of these young parents who valiantly fought on behalf of their son. We should all be so lucky as to have such warriors fighting on our behalf. Even the very act of letting go signals their devotion to their son. They fought until the last flicker of hope was extinguished and I cannot fault them for that.
..... I remember the intensity of my feelings towards my children when they were babies. I would not wish to walk in their shoes and pray for their peace in moving on.
...... with the same fervor, I also pray that the "told you so" crowd zips it just this once.
No one should have to bury their baby.
At this time, I hope we can all unite in our sympathy and support of these young parents who valiantly fought on behalf of their son. We should all be so lucky as to have such warriors fighting on our behalf. Even the very act of letting go signals their devotion to their son. They fought until the last flicker of hope was extinguished and I cannot fault them for that.
..... I remember the intensity of my feelings towards my children when they were babies. I would not wish to walk in their shoes and pray for their peace in moving on.
...... with the same fervor, I also pray that the "told you so" crowd zips it just this once.
18
I do not think that people want to say, told you so, but more let the baby rest in peace. All the could be done was.
4
so happy this baby will not suffer or feel the pain of forced breathing scarring his lungs any longer...poor angel, be at peace.
54
Yes, I feel great compassion for them. For those that were USING their plight, not so much. Mind your own business. Seriously.
40
My heart goes out to the parents but I think this is the right decision. Had they kept their child alive, he would have no "quality of life."
10
Well done, Gards.
This is the right choice, that is, realizing and accepting that there is no choice.
Our thoughts will be with you.
This is the right choice, that is, realizing and accepting that there is no choice.
Our thoughts will be with you.
7
When the diagnosis terminal, why would you not? There was nothing to lose.
8
Don't you mean nothing to gain?
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You do not mention that Dr. Hirano no longer agrees to treat baby Gard. The Times is omitting significant data as it often does.
The water's calling a brain scan "evil" is indicative of a poor understanding of his child's condition.
The water's calling a brain scan "evil" is indicative of a poor understanding of his child's condition.
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Not true. It's in the story.
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What I thought was interesting was that the father referred to the scan as "biased." It leads me to the believe the US doctor was really doing the parents a grave disservice by instilling false hope in their minds. Shame on him for prolonging the parents' and child's suffering in this manner!
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I don't fault the parents--it's hard to know what one would do in their shoes--but I do fault all those who have jumped in with opinions, including Trump (clearly political) and, sadly, the pope.
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@Del:It is always disheartening when politicians or clerics place ideological conformity ahead of kindness and compassion.
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The Pope merely offered to let the family transfer the child to the Bambino Jesu hospital in Rome. That would have given the family time to arrange the experimental treatment if it was determined by the physician that it might help. In fact the Catholic Church does not demand that people be kept alive at all costs when there is no hope of recovery. It is acceptable under Church doctrine for a family to issue DNR order and refuse tube feeding or a ventilator when a patient is terminal. When my Father was dying of aspiration pneumonia resulting from his inability to properly swallow due to dementia (he was 88), my sibling and I chose to sign a DNR order. We asked that he be kept as comfortable as possible. We stayed with him for the 36 hours between his admission to the ER and his peaceful death.
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Sadder still is that Trump was willing to grandstand on this high profile case, but he has no problem condemning thousands of people to premature deaths with his tax cut for the rich in the name of "health care."
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There's something important to keep in mind in cases like these: 'experimental therapy' is not a therapy. It's an intervention of unknown value. Parents want to keep their children alive, but they're not obliged as a matter of morality to try any and all possible experiments to do so. And clinicians are not obliged to offer any and all experiments to do so either.
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@Timothy Murphy
You are missing the point.
The British government had no obligation to pay for or provide this experimental therapy, but it had no right to interfere with this baby's parents' lawful right to seek it out and pay for it themselves.
The government never demonstrated any defect in the parents' care and concern for their child, yet it substituted the judgment of bureaucrats for the judgment of parents.
This is a totalitarian usurpation of power.
You are missing the point.
The British government had no obligation to pay for or provide this experimental therapy, but it had no right to interfere with this baby's parents' lawful right to seek it out and pay for it themselves.
The government never demonstrated any defect in the parents' care and concern for their child, yet it substituted the judgment of bureaucrats for the judgment of parents.
This is a totalitarian usurpation of power.
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And a US Court would order treatment of a child with pneumonia if the parents refused. The parents would not be acting in the best interests of the child
The GOvernment had zero to do with it.
Treatment was futile. The US 'experiment' would be futile. The parents refused to accept reality and wanted to keep torturing the infant with useless medical procedures out of their own selfish need.
UK hospital went to court because it was not in the best interest of the infant that he be subjected to useless painful medical procedures or be used as a lab specimen in the US
Court ruled that it was in the best interest of the infant that life support be discontinued.
If there is any "evil" - it is the parents who could not face reality and act in the best interest of the child
The GOvernment had zero to do with it.
Treatment was futile. The US 'experiment' would be futile. The parents refused to accept reality and wanted to keep torturing the infant with useless medical procedures out of their own selfish need.
UK hospital went to court because it was not in the best interest of the infant that he be subjected to useless painful medical procedures or be used as a lab specimen in the US
Court ruled that it was in the best interest of the infant that life support be discontinued.
If there is any "evil" - it is the parents who could not face reality and act in the best interest of the child
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JMBaltimore, without weighing on these specific facts, I take serious issue with the idea that parents have the unfettered right to subject their child to any and all medical treatments. Children are not lumps of flesh that parents can do whatever they want with. The NHS and the UK government had the obligation to protect this child from being subjected to harmful, untested, or painful interventions.
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Personal tragedy that is none of my business.
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It's all of our business. I don't want Trump and the Pope making medical decisions for me or my children.
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Once politicians and supporters of Christian Sharia become involved, it is everyone's business.
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michael,
You're absolutely right . . . except, that Trump and the Pope jumped into this, on a fact-free and grandstanding basis, demeaning the process and making a private, compassionate, and sensible resolution of this tragic series of events even more difficult. We grieve with the parents, and abhor the tactics of people like Trump and the pushers of religion.
You're absolutely right . . . except, that Trump and the Pope jumped into this, on a fact-free and grandstanding basis, demeaning the process and making a private, compassionate, and sensible resolution of this tragic series of events even more difficult. We grieve with the parents, and abhor the tactics of people like Trump and the pushers of religion.
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My condolences, but about time.
Every parent wants and ought to defend their child to the death, but Charlie was already all-but-dead and in any case irreversibly and terribly harmed by the syndrome, and the parents were incredulous to the point of denying the science outright. His father was shouting "Evil!" when they got a more recent scan ( https://www.theguardian.com/uk-news/2017/jul/21/charlie-gards-father-in-... ), when the correct response was "I'm sad you can't do more to beat my son's terrible illness, but thank you for all you did to try to help him".
Every parent wants and ought to defend their child to the death, but Charlie was already all-but-dead and in any case irreversibly and terribly harmed by the syndrome, and the parents were incredulous to the point of denying the science outright. His father was shouting "Evil!" when they got a more recent scan ( https://www.theguardian.com/uk-news/2017/jul/21/charlie-gards-father-in-... ), when the correct response was "I'm sad you can't do more to beat my son's terrible illness, but thank you for all you did to try to help him".
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May God be with beautiful, little Charlie. And may God be with Charlie's parents now and in the future. May God give them all the strength and support they need.
Little Charlie was not given much in this life physically and hopes were that he did not suffer. Charlie was given the love and care and hope of his parents and with that he was blessed.
Little Charlie was not given much in this life physically and hopes were that he did not suffer. Charlie was given the love and care and hope of his parents and with that he was blessed.
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He was also blessed with the care of some of the best physicians in the world at Great Ormond Street Hospital. They're priority was always the minimisation of his suffering.
10