[Kaiserschmarrn]

I've come across this case quite a bit recently. Basically, the parents want to try an experimental treatment in the US and have raised enough money to do so. The courts, including the ECJ, have ruled that the parents are not allowed to take him to the US and that life support should be turned off. The parents are still trying to reverse the decision.

Note that this is not a case of rationing as the money for transport and treatment is there.

A US professor telephoned Great Ormond Street Hospital at the request of the White House offering dramatic new evidence in the fight to keep Charlie Gard alive. The High Court heard on Thursday how the eminent doctor - who cannot be named for legal reasons - was contacted by Donald Trump’s staff a day after the president tweeted his support for the 11-month-old baby. Mr Justice Francis, who ruled in April that Charlie’s life support should be switched off, asked the physician if he would now be prepared to fly to London to examine the baby if the case was adjourned for a few days. The doctor replied: “ Yes, if necessary I would love to do that.”



The neurologist told the court that a new anaylsis of a study of nine children with a disease similar to Charlie’s but not nearly as severe showed five of them - equivalent to a 56 per cent success rate - had improved after receiving experimental treatment. One child, who had been breathing on a ventilator for eight hours a day, no longer need one at all. Charlie suffers from a rare form of mitochondrial depletion syndrome. Unlike the children in the doctor’s study, the illness affects not only his muscles but also his brain. But the doctor said he could see no evidence from scans that Charlie had suffered irreversible brain damage.

The possibility that the judge may now be open to allowing an assessment threw an extraordinary lifeline to Charlie’s parents Connie Yates, 31, and Chris Gard, 33. Charlie’s case has become a worldwide cause celebre and with tensions running high, Mr Justice Francis also spoke of his deep concern that doctors treating Charlie at Great Ormond Street had been “subjected to the most vile abuse” and threats. He issued a warning that perpetrators who were caught would be punished and said it “was grossly unfair” that staff had been targeted. “I don’t know how anybody can think they are helping the parents’ case,” he said.

Outside the court, pro-life demonstrators denounced the hospital over its handling of the case. During Thursday’s hearing Katie Gollop QC said while cross examining the doctor via a video link with the US: “You had a discussion with Great Ormond Street at the request of the White House on the 4th July.” The telephone call led to the hospital going back to the High Court to reassess in light of alleged new evidence from the doctor, prompting new hearings this week. The hospital maintains that there is no dramatic new evidence that should reverse the decision made by Mr Justice Francis and upheld in the Court of Appeal, the Supreme Court and the European courts. The same doctor had given evidence in April in support of experimental treatment for Charlie but at the time admitted the chance’s of the boy’s condition improving was ‘highly unlikely’. Via video link, he said - nine days after the White House intervention - that Charlie was merely ‘unlikely’ to improve.

Victoria Butler-Cole, a lawyer acting for Charlie’s legal guardian, questioned why he suddenly thought Charlie’s chances had improved after three months, during which time his head had not grown indicating his brain is damaged. She said: “What I am struggling with is how come you concluded a future better than the one given in April?” The professor had earlier told the court: “I estimate the chance of meaningful success [of the treatment] to be at least 10 per cent.” He said there was a small but significant chance of improvement in brain function, adding that he had “over-reached” when he had said at the April hearing that it was likely Charlie’s brain damage was irreversible.

At one point during Thursday’s hearing, Charlie’s parents, who live in Bedfont, west London, stormed out of court furious at the judge for saying: “They [the couple] have not been fighting to retain what he has now but fighting for a chance to give him the treatment to possibly improve.” Mr Gard stood up at this and said: “We’re not allowed, are we,” adding: “I thought this was supposed to be independent.” Miss Yates said: “He’s not suffering and not in pain” before the couple walked out. The judge said: “I am sorry if that upsets them” and later added, “I understand you walking out because it is a desperate situation.”

[Suntzu]

Charlie Gard can't hear or see, can't breathe on his own.

[B0ycey]

This case does fascinate me. It reminds me alot of the Ashya King case a few years ago when a European arrest warrant was issued to a family who essentially saved the quality of their child's life by researching pioneering techniques and ignoring doctors advice. Doctors are human. They can only go by the data they have and make a judgement on that. So they are prone to mistakes or bad calls. Personally I side on the parents on this one and it is all due to the King incident. Charlie has two outcomes. He either has this treatment or he dies. And if this treatment does work (like proton therapy), it can save Charlie's life and the life of someone else in the future. Ultimately I believe when it comes to where someone's child receives medical care, the decision should come down to the parents. They don't want Charlie to have his care at Ormond Street (because obviously they want to switch off his life support machine), they want to go to America. So why not just let him go?

[Rugoz]

Note that this is not a case of rationing as the money for transport and treatment is there.

The money for raising the kid as a vegetable if he survives is there?

[Kaiserschmarrn]

Charlie Gard can't hear or see, can't breathe on his own.

Yes, he's in very bad shape. The parents are obviously hoping to reverse at least some of it and have been prevented from doing so. Since they would be paying for it with the money they have raised, I think they should be allowed to, even if the chances of success are small. An argument can be made that desperate parents should be protected from scammers in situations like this, but this doesn't seem to be the case here.

This case does fascinate me. It reminds me alot of the Ashya King case a few years ago when a European arrest warrant was issued to a family who essentially saved the quality of their child's life by researching pioneering techniques and ignoring doctors advice. Doctors are human. They can only go by the data they have and make a judgement on that. So they are prone to mistakes or bad calls. Personally I side on the parents on this one and it is all due to the King incident. Charlie has two outcomes. He either has this treatment or he dies. And if this treatment does work (like proton therapy), it can save Charlie's life and the life of someone else in the future. Ultimately I believe when it comes to where someone's child receives medical care, the decision should come down to the parents. They don't want Charlie to have his care at Ormond Street (because obviously they want to switch off his life support machine), they want to go to America. So why not just let him go?

The King case is interesting. I hadn't heard about it before, but from my limited reading just now, it doesn't seem to be entirely clear whether the success can be attributed to the alternative treatment Ashya King received.

In this case the question seems to be about the chances of this treatment being effective and whether there is irreversible brain damage. Both are, as you say, judgements based on limited data. I'm not sure if courts should even have the power to prevent the parents from taking a child abroad for treatment, unless it can be shown that the treatment offered is a scam and the burden of proof should probably be on those trying to prevent them from going.

The money for raising the kid as a vegetable if he survives is there?

If the treatment is effective in getting the boy to a stage where doctors would no longer argue in favour of euthanasia, then yes, the money is there and in that case the term "vegetable" would no longer apply. Otherwise, it seems to me, we would have to kill the severely disabled in general.

[One Degree]

Well thought out post @Kaiserschmarrn . I am concerned the doctor from the US has changed his mind from an earlier diagnosis. This hints at something other than the child and parents welfare being of concern. The problem is, even if that is not true, and the treatment is a failure then the thought will remain and it will become a political issue. Ideally, another doctor would have been preferred. I am all for the parents having the final say in the way you described, but it does appear to be a pretty hopeless situation and if so, then I would prefer all the doctors had agreed.

[Kaiserschmarrn]

Well thought out post @Kaiserschmarrn . I am concerned the doctor from the US has changed his mind from an earlier diagnosis. This hints at something other than the child and parents welfare being of concern. The problem is, even if that is not true, and the treatment is a failure then the thought will remain and it will become a political issue. Ideally, another doctor would have been preferred. I am all for the parents having the final say in the way you described, but it does appear to be a pretty hopeless situation and if so, then I would prefer all the doctors had agreed.

Good points, One Degree. I agree that political involvement raises concerns about the doctor's statements. On the other hand, expert witnesses are usually experts not only in their discipline but also in being expert witnesses. They know the law and often make their statements accordingly. I don't know if the doctor has ever been in a court as an expert witness and as an American he may not be familiar with the British system.

I guess my libertarian streak disagrees with allowing courts to prevent someone trying an experimental treatment regardless of the chances of success being "unlikely" or "very unlikely". As long as they pay for it themselves and leaving aside the possibility of vulnerable and desperate people being exploited (which as mentioned doesn't seem to apply here), it's none of the authorities' business. If the treatment fails, the case for euthanasia remains and life support will be turned off later.