Were We Wrong About Charlie Gard?

In these undated photos posted to Facebook, Charlie Gard, who passed away on Friday, July 28, is seen with his parents, Chris and Connie.

By Michael Brown Published on July 29, 2017

Many of us in America protested the treatment of the late Charlie Gard. Some friends in England tell us we’ve been highly misinformed along the way. Some even claim we have done much more harm than good.

If so, we need to do some serious soul searching. But are these charges true? Were we wrong about Charlie Gard?

Respected British journalist Melanie Phillips said this: “I write a great deal about the ideological bullying of the left, the lies published by left-wing media and the inhumanity and irrationality of so much allegedly progressive thinking. But I have never witnessed such concentrated ignorance, arrogance, stupidity and unthinking cruelty as has been displayed by the American political right over the tragic case of Charlie Gard.”

 The “case had absolutely nothing to do with the state or the government,” she argues. “This was not Charlie’s parents v the state. This was Charlie’s parents v the medical profession.” The case is “a conflict,” she says, “in which the courts were brought in as the dispassionate arbiter in the best interests above all of the sick child.”

If we simply blamed this tragic situation on the NHS, we would be mistaken.

So, the problem was neither socialized medicine nor judicial “death panels.” The problem was that the doctors in a world-acclaimed children’s hospital judged that Charlie had suffered irreversible brain damage. His parents were unwilling to accept that, buoyed by false hopes from an American professor whose experimental treatments could allegedly help.

More to the Story

But Phillips tells us that, here too, there was more to the story.

This is from the hospital’s official statement: “In January, GOSH [the Great Ormond Street Hospital] invited the Professor to come and see Charlie. That invitation remained open at all times but was not taken up until 18 July after being extended, once again, this time by the Court.

The hospital received information that the Professor thought NBT [the experimental drug] could do Charlie more good  than he had previously. At that point, says the statement,  “GOSH’s hope for Charlie and his parents was that that optimism would be confirmed.”

Specialist Not Well Informed and Objective?

But, the statement continues, “It was, therefore, with increasing surprise and disappointment that the hospital listened to the Professor’s fresh evidence to the Court. On 13 July he stated that … he [had] not visited the hospital to examine Charlie.” That was cause for concern, but there is more. “In addition, he had not read Charlie’s contemporaneous medical records or viewed Charlie’s brain imaging or read all of the second opinions about Charlie’s condition (obtained from experts all of whom had taken the opportunity to examine him and consider his records).” He hadn’t  even read the Judge’s decision made on 11 April.

The statement continues: “Further, GOSH was concerned to hear the Professor state… that he retains a financial interest in some of the NBT compounds he proposed prescribing for Charlie. Devastatingly, the information obtained since 13 July gives no cause for optimism. Rather, it confirms that whilst NBT may well assist others in the future, it cannot and could not have assisted Charlie.”

“Never Any Hope”

Phillips then summarizes the tragic situation, “In other words, there never was any hope for Charlie…. The claim that fresh research evidence provided some new hope was wholly without foundation and came from someone who had never even examined the child.”

For Phillips, “the really wicked thing about all this” was in “pressure largely emanating from activists on the American political right…screaming that a baby was about to be killed by a socialised [British] health care ‘death panel.” Because of that pressure, “The parents were reinforced in their refusal to accept this tragic situation.” Further, “he whole court process [was] pointlessly prolonged.” The parents were led to believe the pressure could change the court’s mind. “And so the parents were reinforced in their refusal to face reality.”

Not Just about the NHS

How should we assess all this – aside from with added heartbreak?

How should we assess all this – aside from with added heartbreak?

First, I’m sure that Phillips and my UK friends understand their system far better than I do. That was never in question.

I wrote about this last week, referencing England’s “health care system that refused to allow him to receive him any experimental treatment.” When I did so I was careful not to mention the NHS, the National Health Service.

Yet I also wrote of  “what Charlie’s case says to us – no, shouts to us” regarding parents or individuals urgently seeking treatment for children or themselves. The courts and government should not — cannot — stand in their way, 

So, if we simply blamed this tragic situation on the NHS, we would be mistaken.

Why Were the Parents Not Allowed to Seek Treatment?

Second, I still don’t understand how the hospital could stop the parents from seeking other medical treatment for which they had received funding. That remains a major question for me, and one that seems to point to a difference between the UK and the States.

One of my Scottish friends told me what would have happened had the parents been treating Charlie in a private hospital. The results would have been the same. That, to me, still forces me to wonder: Who gave the hospital the power to make that decision and overrule the parents?

What Does This Say About Human Life’s Value?

Third, I believe the hospital doctors were motivated by great compassion for Charlie and deep concern for his parents. Still there remains this troubling statement made to the appeal judges by Katie Gollop, who led the hospital’s legal team. “There is significant harm if what the parents want for Charlie comes into effect. The significant harm is a condition of existence which is offering the child no benefit.”

Reading the statement from the hospital more fully, the question is only intensified.

She added, “It is inhuman to permit that condition to continue.”

I wrote about this as well, asking, “Who else might fall into that category? Other handicapped children? The elderly with severe dementia? The mentally ill? What other ‘conditions of existence’ should be terminated as well?”

This remains a major question for me, a question not answered by the Phillips’ article. To the contrary, reading the statement from the hospital more fully, the question is only intensified. As stated, after a brain episode in April, “Charlie’s has been an existence devoid of all benefit and pleasure. If Charlie has had a relationship with the world around him since his best interests were determined, it has been one of suffering.”

The hospital felt that the treatment would not help. They were concerned it might make things worse. They felt Charlie was suffering now and could be suffering more. Therefore they insisted that he not receive such treatment.

Back To Where We Started

Aren’t we, then, back to where we started? Aren’t these some of the very issues we’ve been discussing all along? Was this the hospital’s decision to make or the parent’s decision to make?

Our biggest questions remain.

I’m sure that, in many ways, Melanie Phillips and I are on the same side. I’m sure that, in the end, everyone involved tried to do what they felt was best for Charlie. I would agree that some of us here in America went too far in pointing the blame at the NHS specifically or socialized health care in general. And to the extent any Americans vilified health-care givers who cared deeply about Charlie, they were mistaken.

Questions Remaining

At the same time, our biggest questions remain. 1) Who gave the hospital the power to stop the parents from getting experimental treatment for their children? And: 2) Who gave the hospital (or courts) the power to decide what “condition of existence” is worthy of further care?

Finally, I have a reminder Melanie Phillips, whom I respect. If any of my friends here in America were too zealous, please remember that we are staunchly pro-life. The situation remains troubling to us, even after reading your article. We’ve seen what has happened in Holland and elsewhere with what appear to us to be related decisions.

Perhaps our zeal was not so misguided after all? Perhaps it was even commendable, even if, at times, it was not presented with perfect accuracy by some? Perhaps it’s not only we Americans who have blind spots?

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  • BTP

    More to the story, eh? Look. A child does not belong to the damned government. Additional chatter deserves a unkind response, at the very least.

    • Paul

      The idea that people are the property of their govt is nothing new. England retains many symbols of that history in their own nation and it appears the condition still exists.

      • Nick Jenkins

        Nonsense. But neither are children the property of their parents. They are human beings in their own right and sometimes they need an advocate when their parents no longer seem able to put their best interests first.

        • Paul

          Nonsense? For how many centuries was England ruled by monarchs who held the power of life or death over their subjects? The now neutered monarchs still parade around the Commonwealth in their pomp. The fact we may not like it doesn’t change the facts

          • Nick Jenkins

            I hardly regard paying the taxes that are due as being “owned”!

          • Kevin Quillen

            “taxes that are due”
            according to who? Where does the ultimate power lie?

          • Paul

            The one holding the bigger spear.

          • Nick Jenkins

            The ultimate power for raising taxes lies with the Revenue and Customs department. That department doesn’t own me. It just calculates the taxes required to fund the nation’s services and I am happy to pay those taxes that are due on my income.

          • Paul

            As I said, decline to pay those taxes and experience the contrary.

          • Pam Shannon

            without paying taxes, including National Insurance, there would be no NHS, no Police, no Forces, no Fire Service, There would be no schools, library’s, or waste collection, and our roads would be even more pot holed than they are. There would be no judicial system. There would be no state pension and even though the cushion of disability and out of work benefits is less than perfect. It would not exist at all. We are not paying a tribute, we are making the country liveable. Our Royal family encourage tourism and particularly the younger ones endeavour to have lives that benefit those that are not so blessed.

          • Paul

            Unfortunately for the vast majority, real liberty is a seriously frightening proposition

          • Pam Shannon

            without our skeletons and rigidity of our bones we could not physically function. Maybe laws, etc give us the framework to function socially

          • Paul

            Where you see bones I often see chains. When looking at the year as a whole, I will work from January to May for no wage in order to fund govt institutions most of which I fundamentally disagree with. If I do not comply I will be destitute or jailed or both.

        • Dean Bruckner

          God put them with the parents and not the government. He commanded, “Obey your father and mother,” because the dad and mom know and love the child most of all the people in all the world (with rare exceptions).

          “Owned” is not the right word, but whatever the right word is, it is many times stronger in relation to the parents than it is to the government. Your comment seems to put them on equal footing, with a tie being resolved in favor of the government.

          Over here, only Progressives think like that, and, sorry to say, their hands are stained with the blood of tens of millions of little preborn Charlies and Charlenes executed in the name of convenience, radical autonomy, the will to power, and naked death. Perhaps that is why our reflex is first distrust, and then shock, revulsion and anger to what looks to us like the callousnbit intentionsl trampling of parental rights and the right to life by the government, which knows Charlie’s name only because it has to fill out an edict that he must die within the system, and there is no clemency.

          • Margaret Taylor Ulizio

            And God put him in England so why not follow England’s law? This is just as reasonable and biblically founded. But I know that it really isn’t about parental rights for you

          • Dean Bruckner

            And why doesn’t England follow the true God’s law? If it won’t do that, it will continue to follow the law of false gods–idols–and the strongest idol will tyrannize the Brits.

        • Ron Boyson

          What you say is the true Nonsense Nick, Children certainly DO belong to their parents until of a certain age or married. A decision that the parents should be making as well with the child only retaining only veto power.

        • d ronan

          Why is a stranger, a random advocate is better in judging what in a child’s ‘best interest’ and not a parent? Are they completely unbiased? Are they devoid of agendas (such as being cheerleaders for euthanasia, for example)?

      • Ron Boyson

        Children are the ward (not chattel) of someone, parents Government etc. since they are incapable of caring for themselves and that is as it should be. Then, by common consensus they are allowed to take control of their own affairs, that is far from ownership. Far too often are allowed to care for themselves far too soon and leave in their wake the wreckage of civil society.

  • Nick Jenkins

    Thank you for reconsidering your views on this. There has been a lot of disinformation and misunderstanding about this case – deliberately, in my view. I have read a lot of hysterical stuff about Charlie being murdered by the British government, and about him being “treated worse than a dog”. The fact is that Charlie had excellent 24-hour treatment for 11 months at a world-class hospital and nothing more could have been done to save him. It is tragic that the US doctor with a treatment to publicise took advantage of this situation and gave the parents false hope.
    You ask about the decision to end life. This is a decision that is taken every day in hospitals in the UK, the US and in every country in the world. Charlie had no quality of life – not the opinion of one doctor, but of every experienced doctor who examined him. He could not breathe, eat or move, and he was dosed up with morphine to kill pain. He was only kept alive because he was attached to machines that were plugged in to the wall. If some people want to make the “worse than a dog” allusion, how many of them would choose to keep their dog alive in such circumstances?
    Why weren’t the parents allowed to take him away? Well, obviously, unplugging him would have led to his immediate death (as we discovered yesterday). And what would be the point? The doctor who had never even examined him claimed a possibility of a 10% improvement in life quality – but what is 10% of zero?

    • Michael L Brown

      Nick, just to be clear, my views, as stated, remain the same, and Charlie’s parents had raised funds for him to be transferred medically for treatment, with life sustaining machinery. As for the point of trying to extend or improve his life — that was their call, not the hospital’s call. To this day, as stated by the hospital, no one knew for sure if he was in pain or not, and once again, when you say he had no quality of life, that remains a subjective judgment. This is from the National Center for Biotechnology Information here in the States on ethical decisions in medical care for children and it appears to be relevant: “When cure for a child’s medical problem is unlikely or impossible, however, courts have been increasingly willing to allow parents to make decisions based on their subjective analyses of risks and benefits (Newark v. Williams, 588 A 2d 1108, Del 1991; In the Matter of Matthews, 225 A.D. 2d 142, 650 NYS 2d 373, 1996). If another physician can be found who agrees with the parents and testifies that she or he will assume responsibility for the care of the child after the original physicians declined to follow the parents’ wishes, all courts will permit parents to remove their child to the other physician, even if the original physicians are convinced that the new physician’s therapies are outside any accepted medical standard (In re Hofbauer, 47 NYS 2d 648, 419 NYS 2d 936, 393 NE 2d 1009, 1979).” Finally, regarding the professor who wanted to help, the hospital said no well before they heard his testimony. So, all my bottom line issues remain exactly the same, as stated in my previous articles. Thanks for the interaction! (I don’t expect to continue to dialogue here in the comment section, so if I don’t respond further, it’s not a sign of disrespect.)

      • charlesarthur

        “That was their call, not the hospital’s call”. Normally it would be, but the child is not the property of the parents. The child is an individual with individual human rights. If the treatment would only make things worse, then doctors aren’t going to approve it and so a court has to mediate between the conflicting views of the doctors and the parents. You’re quoting US law, but this was not judged under US law. It was tried under UK law which includes the Human Rights Act and the UN Convention on the Rights of the Child (which the US is the only developed country not to have ratified).

        Also: in the US, patient welfare is at the centre of courts’ reasoning in cases like this – see Terry Schiavo case (court said it was not in her interest to be kept on breathing tube), and cases where child needing urgent transfusion has Jehovah’s Witness parents who oppose: doctors will seek court order. Also if parents oppose cancer treatment, there is case law in US where doctors can seek court order to go ahead.
        The common thread in all those three is “welfare of the patient overrides that of parents/relatives”. That’s how it was in this case too.

        • Nick Jenkins

          Exactly. Parents, of course, have rights, but they do not trump those of the child. No doubt Charlie’s parents were convinced that they were acting in his best interests but so (to use an extreme example) do many parents who kill their own children. How many would say it was the right of those parents to kill their children? As I say, it is an extreme example – and nobody is questioning the motives of Charlie’s parents, just their mistaken belief that he could live a “normal” life – but the point is the same. Someone had to speak up for Charlie as he had no voice of his own.

          • d ronan

            Why then what a stranger judges to be ‘the best interest’ of a child is more right then what the child parents judge to be in their own flesh and blood best interest? Why is a judgement by a random person is more right then the judgement by those who are the same flesh and blood, same DNA as the child?

        • Dean Bruckner

          Listing Terry Schaivo as an example of how the court behaved properly does not help your case. It guts it.

        • Emilie Wolf Elizondo

          Terry Schiavo was dehydrated and starved to death by having her only source of fluid and nutrition taken away (her feeding tube.) she was not on a breathing tube. The debate there was over whether or not a feeding tube is considered “extraordinary measures” to keep her alive and the outcry was over the fact that her husband wanted to have her feeding tube removed even though Terry’s parents would’ve willingly cared for her.

        • d ronan

          In Terri Schiavo’s case, which was also an injustice, her husband was her next of kin and he wanted to withdraw treatment. Not the hospital or state! So you’re comparison is wrong.
          In Charlie’s case the hospital, court and state used the Children’s Act NOT the Human Rights Act. If they used the Human Rights Act the parents would have won because of the Right to Life and the Right to Family Life. But the Human Rights Act was completely ignored.
          That’s why I find it ridiculous when people claim that the rights of Charlie are separated from those of his parents. Which of Charlie’s Human Rights did the court protect?

    • Dean Bruckner

      It may be that we will have to say, “This is why we left you people,” and let it go at that.

    • eddiestardust

      As far as I can understand it , The Guard’s had raised money on his behalf for his treatment. American Doctors said that they had a treatment which had the possibility of working. The Congress of The United States passed a Bill giving Charlie and his parents AMERICAN CITIZENSHIP. Now , this is close to my heart since I am only a Second Generation American and a Grandson of The Empire who nearly died at Birth.

    • eddiestardust

      Each human life is precious, from the time of Conception to Natural Death. Just because YOU do not see that doesn’t mean you are correct but God does.

      • d ronan

        If you read the comments of GOSH/court/state supporters, each of them sound like they think they are God. Discussing who’s life is worth living, who’s life is worth treatment.

  • Pam Shannon

    As far a people with severe mental illness or dementia are concerned they are not generally on life support systems. so this is probably not a fair comparison.

    • ChiefRagamuffin

      The comparison was treatment that doesn’t actually “benefit” the person. In that sense it’s a valid comparison.

  • Talkin_Truth

    The real problem is that we Americans like to use the children, victims, sick, voiceless, etc. as political footballs.

    Just off the top of my head, I can think of many… Elian Gonzalez. Trayvon Martin, Terri Schaivo, Nayirah, Sandra Fluke… and on and on.

  • Ron Boyson

    I wonder how much hoopla there would have been, if instead of an infant, Charlie had been a 96 year old man who had suffered a mind killing stroke. The decision to allow him to be removed from a respirator, remove feeding tubes, IVs, etc would then have most likely been in the hands of his children in leu of the absence of DNR order signed by the patient himself when he was of sound mind. What has happened to common sense? With this child it is almost as if we the public, the Drs. the hospital and the parents, each for their own private reasons, were some how in a tug of war with God. One death that has occurred in the family of man on this earth for sure, and that is the death of reason.

    • d ronan

      The difference is that with old people in the UK Life Support may be withdrawn if the person themselves want it to be withdrawn or if they can’t speak for themselves their family can decide.But in Charlie’s case the decision was taken away from the family. Can’t you see the difference?

  • Pam Shannon

    I feel that maybe, when parents are in torment, the hurt and fear are so great, it is impossible to comprehend information fully the true picture. that is why maybe having the courts involved, is meant to be somehow a mediation. This poor young couple have lost their hopes and dreams, they need now our prayers. As do the staff at GOSH, who too must be grief stricken

    • d ronan

      Charlie’s mother Connie researched his condition so I think she knew as much as the doctors.
      I don’t believe for a moment that the staff at GOSH (except some of the nurses) are grief stricken. They didn’t have to kill Charlie, they chose to do it.

  • Laura Ann Register

    The truth and fact is, is that God could have healed that little guy, but it takes Faith and asking Him to do so. He is not a God that just barges in and takes over, He is a Gentleman and He waits to be invited. And as far as that Professor, not even taking one our out of his way to go and see Charlie for himself or even reading his medical chart, man, I wouldn’t want to be him on Judgement Day, having to answer to “Why didn’t you go and see Charlie?” and trying to come up with a “good” excuse. That’s not going to fly with the Lord. It’s just plain laziness and not caring. I know that it is not my place to judge others, but that is unexcusable. My prayers have been for Charlie’s parents, and that the Lord and the Holy Spirit will give them the peace and comfort that they are needing right now. I am not a parent unfortunatly, but I do have nieces and nephews and to have any one of them to have gone through that and their parents, I know the hurt though of losing a child, I lost my baby due to a miscarriage, so I know a little about the hurt.

    • Pam Shannon

      I’m sorry Laura, I have experienced a miscarriage too, it’s terrible. Maybe we don’t know the whole truth about the medical man, What we do know is [ I have been listening to David Jeremiah on TBN today] is that little Charlie himself and our little unborn ones are with their heavenly Father

      • Laura Ann Register

        Yes Pam, I know that our babies are and were being raised by Jesus Himself. I know that when every child that is aborted ,dies, or is a result in a miscarriage, that Jesus is the One that raises them for us, and when we do get to heaven, we will see them all grown up and telling us that they love us, and the women who had an abortion and repented and asked God for forgiveness, they will get to see those little ones and they will tell their moms that they for give them.

        • Pam Shannon

          May our heavenly father draw near and give you his comfort until then

  • Linda

    A British child is far more likely to receive life-saving treatment than an American child. Charlie received the best medical and hospital care for 11 months at no charge to his parents. How many American children would have received all this with no regard to family ability to pay?

    • Jim

      It is illegal in the US for any hospital recieing federal funds to turn away someone needing treatment. Your assessment is faulty.

      • Linda

        Perhaps he would be treated when arriving in the ER, but he would not have received ongoing care for many months without charge. Your own fellow American citizens have horror stories of bankruptcy and homelessness due to medical bills. Americans die of treatable illnesses they can’t afford to pay for. You are deceived.

        • No you have no idea what our system is like. All you know is a caricature.

    • Dant e

      It also doesn`t address any of the points made in article

    • Jason Todd

      Charlie was deliberately denied medical care that could have saved his life. The NHS, the hospital, even the judges simply didn’t give a damn about him or his life.

      • Linda

        If Charlie’s parents did not have insurance he would have been denied hospital and medical care in the USA, because so many Americans don’t give a damn about anybody but themselves and are blind to the humanity of universal medical care that every other democratic country in the world lives with.

        • meamsane

          This is false. We have numerous Children’s hospitals in the US that treat seriously ILL Children regardless of ability of the parents to pay.
          Secondly, If a person goes to the ER at any hospital, by law, they have to be treated, and if they do not have insurance, if they qualify, the can at a minimum receive some form of medicaid.
          Thirdly, Charlie’s parents raised 1.7 million $$$ for Charlie’s care.

        • Jason Todd

          You are retarded.

        • John Connor

          Wrong. Nobody is turned away from a children’s hospital for inability to pay

        • d ronan

          I don’t understand how you can talk about ‘humanity’ when you defend what happened to Charlie.

      • Hannah Sealey

        If there was a chance why did the American professor procrastinate for six months. The invitation was extended to him to come to the UK to examine Charlie in January of this year and remained open all that time. He did not come until the invitation was repeated by the Courts on 18th of July. He was in Great Ormond Street Children’s Hospital for most of his short life, and in Britain parents are allowed to stay with the child on the NHS, so it does mean they have to pay anything. How many American children would have been given that kind of care. And yet the staff of that hospital have been villified and given death threats simply for doing their best for an extremely sick baby. It doesn’t seem to me that the American professor cared very much.

      • Margaret Taylor Ulizio

        Jason, No doctor ever thought the treatment would save his life. So right here you are basing your entire argument on a falsehood. There is no treatment for this terminal condition. That is a pretty straightforward statement of fact. Why is it so difficult to understand? Even the treatment for the related condition isn’t a cure and has limited therapeutic value. Yet, people continue to write about this as if there was a treatment for this disease that was denied to this child. There was no treatment. I am not blaming the parents, but when the mother said she thought the experimental treatment for a different disease (a treatment for a disease her son didn’t have) would make her son better, she wasn’t demonstrating a grasp of the seriousness of her child’s condition. I don’t think the parents ever really understood what was happening. Of course they cared about their child but they either were in denial the whole time or, for some other reason, were not able to understand the medical information given them. Why can’t people accept that there are limits to what medicine can do instead of continuing to spread falsehoods about this case? I think all the rightwing folk who are grandstanding with this case should feel at least somewhat chastised. Just screaming and shouting and twisting facts to fit a certain political agenda isn’t going to always work. We aren’t gods. All the efforts of a world class hospital, and too many resources to even list, plus the intervention of world leaders and lots of money still weren’t enough because “real” facts really do matter.

        • Jason Todd

          So you are essentially saying if he was your child you would simply do nothing and let the kid die?

          Tell me, did you agree with the way Terri Schiavo’s case was handled?

          • Margaret Taylor Ulizio

            This response just demonstrates that some people can only argue for their position in *this* case by avoiding all facts. You wrote above that Charlie was deliberately denied treatment that could save him. That just isn’t true. He may have been denied completely experimental treatment that had never been used for his particular condition that no doctor thought would offer much benefit. There was also evidence that Charlie had a pain response, but his parents just disregarded this piece of medical information as if it was irrelevant to any decision making. I guess they thought if he were in pain he would be crying out, but the horror of it is that had he even been in excruciating pain, he could not respond to it in any way, not cognitively, nor by crying out or moving or anything because his degenerative disease left him blind, deaf, unable to move, to eat or to breathe. In fact the only doctor who thought it might offer a small benefit, but ultimately not stop the course of this progressive disease, was a doctor who hadn’t even examined the child or read his complete medical record. So your comment is silly. The hospital approached the American doctor in either late December or early January and invited him to come examine Charlie. So the hospital was clearly pursuing the limited options available, which is reasonable, but it is also reasonable to acknowledge when options have run out. That is hardly a “simply do nothing” approach. I think patient advocacy is a great thing, but at some point what these parents did was no longer patient advocacy. Are you really going to argue that it is morally acceptable for parents to suspend their children in a condition of suffering once it has became clear (and this case is pretty unambiguously clear) that doing this to the child will never in any way benefit the child. That is a really sick position.

          • Jason Todd

            No, my question is perfectly legitimate. What you need to do is answer it:

            Would you be reacting this way if it were your child?

            Further, if you are looking to talk about facts, how about the fact the parents were not even allowed to have their child pass away at home?

            And, again, are you comfortable with the way Terri Schiavo’s case turned out, as this reflects that prior case?

          • d ronan

            You say that Jason don’t know the facts but the ‘facts’ you repeat here are not facts but claims made by GOSH .
            It isn’t true that Charlie was blind. You can see in videos and pictures that he looks at his parents. He had a normal brain structure and no severe or irreversible brain damage (whereas GOSH lawyer claimed in court he was brain dead) which was proved by the MRI reports that are in the public domain.
            There was never evidence Charlie was in pain. Is heartbeat was always stable indicating he was not in pain.
            Charlie’s parents who spent most time with him said that he can sense when they are with him and know who they are. That he makes an effort to open his eyes and look at a toy. That he can cry, not with sound but with tears. That he enjoys tickles. (Judgement paragraph 108-111).
            Charlie was killed while aware of his own existence and aware of his connection to his parents.
            I cannot for the life of me understand those who support what GOSH and the courts have done to Charlie and his parents.

          • Margaret Taylor Ulizio

            What do you mean his heartbeat was always stable? The heart is a muscle and heart rate varies under normal conditions, even when a person his healthy and not in pain. So, goes down when a person sleeps, up when they exercise, perhaps changes a bit when they see someone they love or hate. Might the stable heart rate just indicate that the machines were maintaining it and that Charlie’s heart did not have the muscle capacity to respond like a healthy heart?

          • d ronan

            By stable heartbeat I mean that an indication of pain is increased heartbeat but Charlie had always a stable heartbeat.
            Charlie muscles were fine in January when the parents wanted to take Charlie to US and in April when the case went to court.

          • Margaret Taylor Ulizio

            If he needed a ventilator at this point, his muscles weren’t fine. His progressive degerative disease affected his muscles. You are in a world of magical thinking.

        • d ronan

          Wrong. Dr Hirano told the hearing in April that “There is theoretical and scientific basis saying it [treatment] will work.It is not invasive. The only toxicity is diarrhoea. A three months trial should be sufficient” (Paragraph 76). I cannot see why, based on this, the parents were not allowed to give Charlie this opportunity.

          • Margaret Taylor Ulizio

            But he never examined this particular infant. What is abundantly clear is that sometimes a third part has to step in, especially when those closest either willfully or for some other reason lack the capacity to comprehend the basics of what is going on. Every person writing aboiut this as if it is solely about a parent’s rights without any acknowledgment of parental duties (even if they are really devastating) or the rights of the chikd not to be subjected to futile treatments just makes it clearer that what was done in this case was correct.
            Gosh, I can’t even get a heartworm prescription for my dog without having my dog examined in person. GOSH knew about the experimental therapy and extended an open invitation to this American doctor months ago, so no one was preventing Dr. Hirano from an in person evaluation. I think it is absurd that people are taking what the parents have said as informed medical opinion. No doctor, even Dr. Hirano, thought that the experimental treatment would cure him or have any sustained benefit. The news reported that the parents were shocked at how fast it was. This child took his last breath a long, long time ago. Without the machines, there was no life for him. There was no last breath after the machines were turned off

          • d ronan

            I would like to see evidence for GOSH claim that they invited Dr Hirano to come see Charlie since January. In the judgement from April there’s no mention of this.
            As for Life Support, it is a standard treatment when patients find it difficult to breath, such as victims of accidents. Stephen Hawking rely on a ventilator at all times and so did Christopher Reeves after his accident. So your argument that someone on life support is not alive does not hold water.
            If GOSH would have let Charlie go to US in January he had a good chance to get better. Dr Hirano gave 11%-56% chance. To be honest if the alternative is that he will pass away it was worth trying at any chance.

          • Margaret Taylor Ulizio

            No, my argument isn’t that life support should never be used. I didn’t say that. Charlie Gard didn’t have difficulty breathing. He *could not* breathe. The disease affected his muscles. Imagine, still being able to feel pain but your muscles (including your heart) being in a condition that they are completely incapable of having a response. There is a weird sort of generalization going on in a lot of this discussion. There may be times when the courts overreach, this just isn’t an example of that. There may be times when supportive care, including artificial ventilation, is the right thing to do, but that doesn’t mean it was right in this case. I didn’t say that every person on life support is not alive, nor is that what I believe. I was talking about Charlie Gard, who was on life support because he had a disease that is terminal (not chronic), that had progressed to terminal and for which there is no treatment. What is so problematic with so much of the discussion in this case is the complete inability to address this case based on the facts of *this* case. Charlie Gard isn’t Terri Schiavo or Stephen Hawking, and his condition is not the same as either of these cases. Just because something applies to one person doesn’t mean it applies to all persons. A ventilator may help one person and do nothing for another. Is this really that difficult to understand? Charlie Gard was Charlie Gard. He was born with a devastating terminal disease that progressed rapidly. For whatever reason, his parents never seemed to grasp the nature of his particular variant of mitochondrial depletion syndrome. The whole thing is tragic and horrible. The parents went through something terrible. But, to conjure up conspiracy theories about the hospital because you are incapable of accepting that human beings can’t really make everything right again is just weird and unfair.

          • d ronan

            I think you are the one who do not address the facts of this case. You just repeat the claims by GOSH.
            By the way, needing a ventilator to breath is the same in the case of Charlie and Stephen Hawking. The reason is different but the result is the same.
            Charlie’s condition was terminal if not treated, but neither you nor GOSH can say that it would have been terminal if treated.

    • Boris

      0.

    • d ronan

      But an American child’s life is protected. If free treatment on one hand means doctors can prevent us from seeking treatment elsewhere and can kill our child then I rather pay.

  • Boris

    The Christians who are upset about this situation prove that they really know when this child dies he will not be flying off to the Christian magic happyland. When I’ve observed Christians crying at a funeral they too know that the Christian heaven is nothing more than a religious hoax and they’ll never see their loved one again. Ever. William Lane Craig insists that when the Israelites supposedly murdered small innocent children they were actually doing them a favor because those children get to go to heaven. So why in the world are you Christians so upset about this child in England? According to your dogma death will send Charlie to a better place, a sort of celestial North Korea where Charlie can now worship and praise Dear Leader for the rest of eternity. Right?

    • LgVt

      With the full understanding that this is a flippant attempt at atheist trolling, I will nonetheless attempt to make a brief response.

      First, a temporary parting is still a parting. It still hurts for those left behind, and that is nothing to sneer at.

      Secondly, much of the outcry in this situation is anger at an injustice. It is very possible, even likely, that this treatment would have failed, and that Charlie Gard still would have died. But by forcibly preventing his parents from even making the attempt, the authorities in this case have rendered themselves accessories to his death.

      Which leads into my third and final point: Death is NOT a good thing. Paul calls it “the final enemy” for a reason. The fact that God made use of it after we inflicted it upon ourselves does not change the fact that it was not a part of His original plan. It is an outrage in His sight, and something we justly mourn, just as Jesus mourned the death of Lazarus (even though He knew that He was about to raise him from the dead).

      Charlie Gard was baptized. He is in Heaven, and will be raised on the last day. But that does not make what he went through in this fallen world any less tragic.

      • Boris

        This is a very sad story. However it did raise issues that need to be discussed. And this is the fundamental disagreement between freethinkers and religious people and I guess between you and me. We believe issues of morality and ethics should be discussed and debated and that morality is based on the value of human life itself. Religious people believe ethics and morality should be dictated from ancient religious texts written by backward, superstitious, animal sacrificing primitives and interpreted by only those gullible enough to believe the ridiculous stories therein. Not to mention the ridiculous laws or the childish and ill-mannered deity that supposedly dictated them. I’m going to have to think about what happened with Charlie and the issues that were raised by this case before I come up with an opinion on it, if I ever do. You’re strictly a binary thinker so you can only ever see one side of an issue. You never had to even think about the case and you’ve already even assigned blame to one of the parties involved. You’re too intellectually lazy to actually sit down and consider the different sides of a complex and difficult issue and then think your way through it. No, you have this book with all the answers already in it. An omniscient God had an original plan he had to change because something happened that he already knew was going to happen anyway, happened. That doesn’t make any sense. Can you be a little clearer on that? I shouldn’t have to mention that science has a much more plausible explanation for death that is supported by quite a bit of evidence, unlike your explanation which was disproved a long, long time ago.

        • Kevin Quillen

          Boris; Tell me how you arrive at moral decisions please. What is your basis for morality?

          • Boris

            Kevin. Morality is based in choices and choices are rooted in values. For humans, the most basic choice is between life and death, so the ultimate value is life. Anything which protects, enhances and improves human life is termed “good” that which harms or destroys it is “bad” or “evil.” So my basis for morality the value of human life itself. This leads to a far more compassionate and rational system than that of a deity whose whims cannot be understood and who is not constrained in any manner by the commands he gives to others. Religious morality is subjective to the extreme because it is established by a being whose motives and very nature are absolutely beyond human comprehension which makes it impossible to discern any moral law beyond, ”God wills it.”

          • Kevin Quillen

            am I right in assuming you are an atheist? So far I agree with you. I am a Christian. Does the life of a human mean more than the life of an animal, from the atheist perspective?

          • Boris

            “The Buddhists say we come back as animals and they refer to them as lesser beings. Well, animals aren’t lesser beings, they’re just like us. So I say blank the Buddhists.” Bjork (Icelandic singer songwriter). Yes to us human life means more than the life of animals. That’s why we eat them. All life must destroy other life in order to exist. Who came up with that plan? Your God? Not too bright is he? I could have done better and so could you. Or does naturalism explain this a little more thoroughly?

          • Kevin Quillen

            “Yes to us human life means more than the life of animals”
            So far so good. Tell me….In matters NOT pertaining to life and death, how do atheists decide what is legal or illegal? I am serious with this question. You seem intelligent and rational so please help me with this concept.

          • Boris

            I think the question really is meant to be how atheists decide what SHOULD be legal. Again, I think we’re all using the same basis, the same system for our ethical decisions even those that are not as important as some others. In this case you raised we all want laws that protect, serve and enhance and do not harm our society and with the fewest restrictions. However we aren’t all going to agree on everything that should be protected, served, enhanced or restricted or how. While it seems like many atheists tend to lean to the left I do know they are pretty much all over the political spectrum. You are going to find atheists on all sides of the healthcare issues and the law itself, all sides of the abortion issues, gays and/or trans or whatever in the military or the bathrooms, the Johnson Amendment, Muslim immigration, the legalization of marijuana, of gay marriage, euthanasia, proposed regulations of the vaping industry, Trump’s tweets, Inflate gate….
            As far as what IS legal as of 2015 atheists make up about one tenth of one percent of the United States federal prison population or a little more than one in a thousand. Down a little from where it was in 1997. Some federal prisons report they have no atheists at all among their inmates. Texas (25) has the most atheist inmates. The percentage of atheists in the general population of the United States is at least ten percent. So most atheists are not only aware of what IS legal they are the most law abiding citizens we have.

          • Kevin Quillen

            interesting but you did not answer the question. Let’s make it personal…..how do you decide what is morally correct, again in matters NOT pertaining to life?

          • Boris

            Maybe I don’t understand the question. I don’t see what difference it makes whether the matter pertains to life or not. The same value system that tells us destroying life is wrong tells us harming life isn’t such a good idea either. There’s no difference except in degrees. In my personal life I don’t worry about being morally correct. I just don’t think in those kinds of terms. I’m a good person for my own selfish reasons. As long as I am not harming another person or life form for no good reason, directly or indirectly either willfully or through carelessness I’m good. I’m morally correct as you put it. Again if morality for humans is based on the value of human life itself then that which enhances, protects or improves life is morally correct and that which harms or destroys it is morally incorrect. That’s how I decide. Healthcare for profit is morally incorrect. New term for me. Trying it out.

          • Kevin Quillen

            ” As long as I am not harming another person ”
            Let me propose a scenario to you and I hope you will answer honestly. I believe you will.
            You are walking down a hospital corridor and come to an open door. Looking through this door you see the most beautiful woman lying on a bed and just then a doctor passes by and says to you, “what a shame, poor woman has been in a coma for months, does not see, feel, or know anything, just lies there.” Would you enter, close the door and have your way with her? After all, you would not be harming her because she would not know you are there. I am very interested in your answer. Let’s just agree on the idea that you do her no harm.
            Thanks, Kevin

          • Boris

            I wouldn’t do anything. It sounds too much like being married. Just kidding. You set me up for that one. I wouldn’t do anything because I’m not interested in women who are not interested in me.That kind of scenario doesn’t do anything for me. I guess I need some sweet talk, usually enough to make sure they’re not crazy to start. So I wouldn’t have to make any kind of moral judgment in that situation. However I thought about the situation and I can’t see myself doing something that I would very likely stop someone else from doing if I knew what was going on. Now if she was wide awake and invited me in for a chat we may very well have a deal.

          • Kevin Quillen

            “I would very likely stop someone else from doing if I knew what was going on.”
            Why would you stop them? They are doing no harm to her. Could it be that there is something inside you that tells you right from wrong? Read Romans 1:19&20. There may be hope for you yet. :>)

          • Boris

            Whether or not anyone gets hurt this is a very serious crime so this probably isn’t a good example for you or us to use. There are too many different reasons to stop this act that don’t require any kind of moral judgment. In my state remaining silent and failing to report a crime can have negative consequences. However let’s just forget that and I’ll grant you your argument that some sense of right and wrong was my real motivation for stopping this crime or not doing it myself. You still have to present some real evidence, NOT an argument that this sense is something the God of your particular religion somehow magically gave me. I learned English, math slowly and painfully but somehow I couldn’t have learned a sense of right and wrong and how to behave and get along with other people the same way. No, that knowledge could not have been learned gradually and painfully as I remember very vividly it was, it was given to me at birth. What’s the evidence for that?I can’t trust my memory? I already clearly demonstrated that our sense of morality or “something inside you that tells you right from wrong” does not require a supernatural source.There are lots of examples of moral or protomoral behavior in other animals. Many animals share their food, vampire bats are good example. Has your cat ever brought you something? Apes and monkeys will comfort members of their group who are injured, sick or upset and they almost always work together to get food. Dolphins and whales will push sick or injured members of their group to the surface to get air and food. They’ll actually put themselves in harms way to help other members of their group. Elephants will also defend other members of their group and try their best to save them from harm. These are examples of morality that advanced to higher levels with human evolution. Instinctive behavior is built into the genes of animals by biological evolution. When that is added to cultural evolution that is a very plausible explanation for human morality based on very good evidence. I’m not going to accept a supernatural explanation for something that’s already been satisfactorily explained scientifically. However I am open to evidence that I am wrong. But not arguments.
            Why do Christians always think atheists haven’t read the Bible? Most of the atheists I meet are ex-Christians who know the text of the Bible quite well. I think a careful reading of the text Bible has caused more atheism than all the anti religion books ever written put together. I’ve had that verse hurled at me personally and heard it quoted otherwise at least a thousand times. It’s one of the Bible’s many defenses against free inquiry and critical thinking and it comes from a person who knew practically nothing about the real world. We have naturalistic explanations everything now, including human morality. Pick up a science book. There may be hope for you yet.

          • Kevin Quillen

            Excellent reply. Good points made. OK, let me shift the discussion a bit. Where does information come from? My example……caterpillar wraps himself into a cocoon after eating a meal of leaves, time passes and one day a butterfly emerges from the cocoon. Is the first thing he does is find a leaf to eat? No, he heads for the nearest flower and dines on pollen. How does he know what to do? Where did the info come from? There are many darwinists who struggle with this concept. In fact there is a move to try to find a way to get some kind of intelligence into the DNA. Many are realizing that evolution as currently taught is impossible. Irreducible complexity, symbiotic relationships, and very specific design are the death knell for darwinism. There simply isn’t enough time for all this to have evolved. The most interesting thing to me as far as recent discoveries is the detection of soft tissue in dinosaur bones. Have you seen this? Of course the darwinists immediately began trying to postulate theories as to how this could happen, but to me the theory is weak. Kind of like the Oort cloud. No one has ever seen it, but……it has to be there for the old universe theory to work. Last point….did you know that there are many scientific facts in the Bible that man did not discover until fairly recently? Written about 3500 years ago. Mountains at the bottom of the sea, vents on the ocean floor, “paths” in the ocean that once discovered were very beneficial to the shipping trade, the concept of washing hands under running water to stop spread of disease, star clusters that are bound together. This things are proof that the Bible was inspired by God. The Bible is misrepresented by almost all Christians, most do not study seriously, most just believe what they hear. It is a sad fact that Christ and the Bible is misused and misunderstood. I am a heretic according to 99% of Christians. I have studied seriously for about 35 years and have come to my beliefs independently. I have experienced the “living” word and have peace because of my relationship with my Creator through Jesus. I sincerely hope that you to find the peace that surpasses understanding.
            If one properly understands the Bible, it comes “alive” and changes one from death to life(spiritually).

          • Boris

            “There are many darwinists who struggle with this concept.”
            Name one. First of all anyone who uses the word,”Darwinist” or “evolutionist” is a scientific ignoramus. The expression Darwinism was invented by creationists to try to bring science down to the level of religious superstitions. It’s called Evolution by Natural Selection and this is taught in every Christian college and university in the world that teaches life sciences and has been for over a century. Where have you been? Evolution is the most useful, most productive, longest standing and best established scientific explanation we have. Evolution is considered to be the model scientific theory because it is better established than Atomic Theory, Relativity, Cosmological Theory or any other scientific theory. There is no debate over the validity of Evolution by Natural Selection. None whatsoever nor has there been. Your creationist cult leaders have obviously convinced you there is but they are lying to you. And you can prove this to yourself by looking up the Quote Mine Project. Please do this. There you can read what scientists have written and then clearly see how creationists dishonestly took these quotes out of context to make it seem like they agree with the creationists when they do not. Quote mining is the same as lying. This will leave no doubt in your mind that you have been lied to by creationists. It wouldn’t do any good for a scientist to lie because one thing about scientists is they absolutely love proving each other wrong. That’s how we know they get it right and that they are always honest. Creationists and Design Magic hoaxers are definitely not right and they have been proved to be dishonest. Very dishonest.
            “but to me the theory is weak” So what? You don’t know anything at all about science. Here is some of the scientific literature that explains where information comes from Increased genetic variety in a population (Lenski 1995; Lenski et al. 1991) Increased genetic material (Alves et al. 2001; Brown et al. 1998; Hughes and Friedman 2003; Lynch and Conery 2000; Ohta 2003) Novel genetic material (Knox et al. 1996; Park et al. 1996) Novel genetically-regulated abilities (Prijambada et al. 1995) If these do not qualify as information, then nothing about information is relevant to evolution in the first place. Are you going to check this stuff out? I doubt it because if you were really interested in the real answers to these questions you’d read the scientific literature on the subject. You only asked this question hoping I couldn’t answer it and then you can say, “It must be God” or something equally vacuous.
            “Many are realizing that evolution as currently taught is impossible.”
            Again ,name one. Now that is a lie. If it were true then quote a real scientist who works in the field from an accredited Christian university or anywhere else that has made that claim. Soft dinosaur tissue. Oh please, how ignorant of the facts nature do you want to be? Humans and dinosaurs did not co-exist. The dinosaurs went extinct 65 million years ago when the planet was hit by an asteroid. In fact more than 99 percent of all the species that have existed on this planet have gone extinct. Doesn’t argue very well for your Intelligent Design Magic does it? Everything your designer supposedly makes breaks. Evolution explains this a little better than your failure of designer does, don’t you think? Mountains and vents in the ocean. What about everything the Bible gets wrong? How about the earth being created BEFORE the sun and vegetation being on the Earth before the sun was created. How about the Bible saying humans ate veggies first and meat later? That’s not true. Human’s ate meat first and veggies quite a bit later. The Passover event described in the Bible is a complete fiction. I think the Egyptians would know it if the worst human tragedy ever had occurred in their land. There’s not a shred of evidence that the Israelites were ever in Egypt. That alone spells the end for all three monotheistic religions. I don’t care about your personal experiences because people of all religions make the exact same claims. You Christians would never accept personal experiences from adherents of other religions as proof that their religion is true. Yet you think for some reason other people should accept your supposed personal experiences as evidence that your religion is true. You people are just so arrogant. I can read the New Testament in Greek. It doesn’t come alive it was written to kill your brains and get you to follow the Church blindly. You can tell by reading it the Church already existed when the NT was forged. So we know who wrote it. The Church. They were competing with other cults and religions for converts, their money and their young boys. “Look we have these texts and they leave us in charge of the whole world. It says right here God came to Earth to found OUR church.” What a coincidence! It’s a hoax and fraud right from the start. Jesus Christ never even existed. Now you told a lot of lies in your post which is kind ironic for someone who is supposedly so interested in morality and ethics. I’m not going to go back and count them. But you owe me an apology. You see in this world the only way you can really be forgiven is by kindness and faulty memories. There is no Jesus. Never was.

  • Jennifer Hartline

    We are not wrong about the fact that his parents’ rights were abrogated by doctors and courts. They essentially lost custody of their son. Charlie was held hostage to people who decided the only acceptable outcome for him was death, and death on THEIR terms.

    Chris and Connie were treated wretchedly. Charlie’s life and precious time was literally stolen from him and wasted by a lengthy court battle that never should have happened in the first place.

    No one can say whether or how much the treatment might have helped him. No one can be certain there was no hope for Charlie. There was absolutely nothing at all to lose by trying, and his parents had EVERY right to try. Now we will simply never know. Charlie may have been helped, even if only a little, and something valuable may have been learned to help another child in the future. But his doctors made a value judgement, not a medical judgement, and decided Charlie’s life wasn’t worth it and should be ended, period. They would allow no other outcome but for him to die.

    And then to even deny his parents the chance to bring him home was the final unjust blow.
    We are not wrong about any of that.

  • Hannah Sealey

    The American professor was invited to come to the UK to examine Charlie Gard in January, but did not come until 18th July, and that was only after the Court had repeated the invitation, by which time it was too late. He needs to think about the suffering he has caused the parents by building up their hopes and then procrastinating for six months. The invitation to him was open all that time.

    • d ronan

      I read the whole judgement from April and there was no mention in the judgement that Dr Hirano was invited by GOSH to examine Charlie at any point. It was mentioned that GOSH did email him data (Judgement Paragraph 75) and based on it, while giving evidence over the phone, he still offered Charlie the treatment (Paragraph 76, 77). I find it very hard to believe that Dr Hirano would not have come to examine Charlie earlier had he been invited. Remember, GOSH was the only ones deciding who can see Charlie as the parents parental rights were stripped away. Statements by GOSH seem to be made in order to discredit Dr Hirano and exolt GOSH but I doubt the information given in those statements reflect the truth.

  • Sharon McLeod

    Michael, I read your article with interest.Before I address some of your points, one question I have. We have a health care service in the UK which is ” free at the point of need from the cradle to the grave”. The USA have one quite different. Many mention the family crowd funding to raise the funds for his care at a US hospital. I would like to ask, in the spirit purely of a question, if your health care system was so willing to help, why was it not offered FOC in the same spirit as ours is currently run?? No one seems to have noticed that small point? If the family hadn’t raised that money would that offer have stood?? I think not. Anyway, I digress. This child could not have travelled from the time he was intubated,ventilated, and treatment escalated as his organs failed. He was in multi organ failure, with at best, sub optimal responses to ever increases regimens of treatment, which was all that was keeping him ‘alive’.His ventilation would have been at maximum levels where nothing further could be added. He was on a complex range of medications & interventions designed to either support or take over roles within the body.A lot of this is done to allow the body to rest and/or fight infections/issues etc and when it’s showing signs of recovery, treatments are titrated down accordingly. That did not happen with Charlie because his underlying condition meant it couldn’t. Now imagine trying to move/fly a very unstable, critically ill baby in a pressurised cabin for X number of hours, and expect his body to adapt to & managed all the physiological changes required at height to be able to stay alive?? To do so, & risk almost certain death could only have been considered if the benefit of treatment outweighed the burden placed upon the child. There was no evidence given that this so called miracle cure could or would provide that. GOSH even produced this paragraph in their position statement dated 24th July. Read it very carefully. It is a key area from which further decisions were made “No animal or human with Charlie’s condition, RRM2B deficiency (“RRM2B”), has
    been treated with NBT and therefore an application to the Rapid Response Clinical
    Ethics Committee was prepared in January. NBT was and is a possible treatment for
    GOSH patients suffering with TK2 deficiency (“TK2”), a similar genetic disorder, but
    there is a crucial difference between the two conditions. TK2 affects muscle (and is
    treated with 2 compounds) whereas RRM2B affects muscle, other organs and brain
    (and would be treated with 4 compounds”
    So you see, this drug was never of any clinical benefit. It was not a treatment option, & certainly not one that could justify the decision to ensure his death in transit somewhere between GOSH and your country. This is not how we value human life in the UK. Do you honestly believe that blindly giving a completely untested drug, with no idea of its effect on a human being was in Charlie’s best interests? Do you really think the very real possibility that it in fact,this could make his situation even worse, be the way we consider managing health care in the 21st century? This little boy deserved, & received input from all the experts in this condition from around the world. If any one of them had agreed that this drug had any merit,they would have voiced that view. None did. Do you, or anyone for that matter, really think that this little boy did not have everything possible done that is currently available in the world? You’ve made a huge assumption that no one cared about this little boy’s quality of life. You are very wrong. In the health service that is ALL they think about, consciously or subconsciously every day they are on duty,& even on the days they are not. At all times the focus of care must remain on the patient. Families are always involved with the care being given and why. They are always kept up to date with clinical changes, and their significance,more so in critical care. What critical care can often, inadvertently do is give false hope where there isn’t any. It has the technological capabilities to take over the function of pretty much every organ in the body, and so to families, it can ‘look’ as if their relative is going to get better. However, and this is a huge point, no organ can be sustained in that manner for ever. The person will die if the situation cannot be reversed. That is what was happening in Charlie’s case & as does in many critically ill patients across the world. We do not yet have all the answers. We have no cure for the common cold, far less a condition which has affected a total 16 people in the world, and Charlie is one of those 16. You cannot equate Charlie’s situation with the other areas of disability you describe. Not even close. There are many many disabled people in our world , but not living in critical care, because that is not living, merely existing because a whole bunch of multi modal therapies are being given to barely keep your heart beating,your lungs being artificially inflated, your kidneys squeezed for urine, your food intake being via a tube, your blood pressure etc all artificially managed. That is not ‘living’. If they had removed anyone of the treatments he was being given,or even just decreased his ventilatory support a tiny amount, he would have died regardless.He was unable to sustain his own basic functions. He was unable to live. That was not something the health care professionals chose to remove from him. I am going to end now but one thing I will point out is that I am a retired matron for critical care who does understand and know exactly how GOSH pulled out all that was available for this child, & I also know how the family will have been supported throughout Charlie’s time with them. I am so very sad for their loss, but equally I am so very angry at the way this case has been portrayed in the media.Nowhere else on this earth,with our current knowledge base on this condition, could have provided this little boy with anything more than he was given. I do not understand why it is felt necessary to try to look for someone or something to blame with his care and sad outcome. It is life. We didn’t make the rules on that one.

  • NewWest 123

    Even for people who didn’t understand or pay attention to the medical situation, it was the Socialist control over this family’s lives that ticked everyone off! The parents deserved to make their choices and we will never know because of interference from the government, what may have happened to this little soul… May he Rest In Peace and may people in America wake the heck up!

  • d ronan

    The reason GOSH was able to take Charlie’s parents to court and the reason the court could strip the parents parental rights away is the (to my mind despicable) Children’s Act 1989 which the UK adopted from the UN Convention on the Rights of the Child.
    This Act says that children’s rights are separated from the rights of their parents. The central provision of the UN proposal is this (Article 3): ‘In all actions concerning children … the best interests of the child shall be a primary consideration. States Parties undertake to ensure the child such protection and care as is necessary for his or her well-being, taking into account the rights and duties of his or her parents …’

    So rather than affirming the parents as the ultimate authority in a child’s life, this puts the state in charge, only requires it to take into account the parents’ rights.

    This was the “correct” decision, according to U.K. law professor Sir Ian McColl Kennedy, who said:
    ‘… [C]hildren do not belong to their parents. … [W]hen a claim is made that parents have rights over their children, it is important to step back and examine the language used. We need to remind ourselves that parents do not have rights regarding their children, they only have duties, the principal duty being to act in their children’s best interests.’

    (When I read this paragraph aloud at home my 10 years old daughter huffed in astonishment. Even a child could innately sense that this assertion is wrong).

    The way the Children’s Act 1989 is executed in the UK is by appointing a ‘gurdian’ to every child involved in a case in the Family Courts. This stranger is to decide what is in ‘the best interest of the child’ rather then his parents. The Act means that the wishes of the parents are completely irrelevant (Judgement paragraph 39 (x)). So it is the hospital, guardian and court, all strangers to the child, that decide what is in the ‘child best interest’.

    Mr Brown’s British friend claimed that this is not to do with social health care and the same would have happened if Charlie had private hospital care. But I disagree.
    A private hospital knows that if they behaved in the same manner as GOSH did they would lose customers. GOSH doctors will be paid regardless of how they treat patients and their families, and they know it.
    For private hospitals having a reputation of medical excellence is important so they can draw more customers.
    For GOSH having a reputation of medical excellence is a matter of ego and if they have to sacrifice a baby’s life to maintain it, then that’s what they will do.

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