Charlie Gard 15

[cjt110]

This is a thread following the legal and ethical questions raised by the recent court case involving Charlie Gard.

Please could we refrain from insulting or otherwise "bashing" his parents. It isn't in the spirit of Mumsnet and will get the threads removed.

Please could we also remember that at the heart of this case is a terminally ill baby and his heartbroken parents. There are those participating in and watching this thread for whom these issues are painful. Please let's try and be mindful of them when we post. This isn't a place for name calling or trivialising the very real pain they feel. Many parents of severely disabled children are on here.

Lastly, here are some hopefully useful reference points of facts surrounding the case.

13 July GOSH position statement on latest hearing (includes update on Charlie's condition):
www.gosh.nhs.uk/file/23611/download?token=aTPZchww

7 July GOSH statement on Charlie:
www.gosh.nhs.uk/news/latest-press-releases/latest-statement-charlie-gard

June 2017 Supreme Court decision:
www.youtube.com/watch?v=P6rPmvGlNhA&app=desktop

May 2017 Court of Appeal Decision:
www.bailii.org/ew/cases/EWCA/Civ/2017/410.html

April 2017 High Court Decision:
www.bailii.org/ew/cases/EWHC/Fam/2017/972.html

GOSH FAQ page on Charlie:
www.gosh.nhs.uk/frequently-asked-questions-about-charlie-gard-court-case

Timeline so far

August 4, 2016 Charlie born 8lb 3oz to Connie Yates and Chris Gard.

October 2016 Tests reveal mitochondrial depletion syndrome.
Believed to be only 16th sufferer in the world of rare strain.

Autumn 2016 Miss Yates finds specialist in US testing nucleoside therapy, but it has never been tried on Charlie’s rare type.

January Gosh doctors say drug would be futile because of irreversible brain damage. Parents contact US doctor.

March Gosh asks High Court to let Charlie die. Mr Justice Francis gives parents a month to make case for treatment. Daily Mail readers help raise £197,000 in days to help fly Charlie to US.

April Doctors say he is likely to be in pain. Judge rules Gosh should let him die.

May Court of Appeal upholds ruling. Parents appeal to Supreme Court.

June Supreme Court rejects appeal. On June 27, European judges back decision. Gosh gives parents more time with Charlie. Pope Francis intervenes, followed by Donald Trump on July 3.

July 7 Seven scientists hand Gosh fresh evidence showing higher survival chances.

July 10 Mr Justice Francis gives parents 48 hours to produce new evidence in case.

July 13 US specialist Dr Michio Hirano invited to London by High Court

July 17 Dr Hirano examines Charlie.

July 21 Court told scan results ‘very sad’.

Today, 24 July, High Court due to rule on the case, ten days before Charlie’s birthday.

Jinglejanglebobs On the Independent comments section a week or so ago there was a very good post by a Consultant of 30 years medical experience [username 'Woadisme'] S/he did not work at GOSH, but described Charlie as having brain damage at a cellular level- S/he also said there was no treatment that would work for a baby as sick as Charlie because of the level of brain damage. S/he was very honest, and it was plain s/he thought the proposed treatment was useless.

Samesorry
It wasn't harsh. The post I was quoting was referring to the media, not the parents.

But then aren't we saying the the GOSH statement about Hirano is incorrect?

Please let this thread stay.
It is easily the best discussion forum online about this tragic case.
People have spoken from the heart, the comments are mainly humane and thoughtful.

It is hoped that those who, like the Professor, have provided the opinions that have so sustained Charlie’s parents, their hopes and thus this protracted litigation with its many consequences, will also find much upon which to reflect.

This, from the GOSH position statement, says it all really. It is clear that the parents have been exploited and given false hope by people who should really have known better, but stood to gain themselves in some way (even if that was not monetary, but to advance their research). I think Hirano's reputation has been tarnished by this.

The judge also made some quite strong comments in the judgment, including about the negative influence of social media versus evidence-based information.

Justice Francis's approved judgment is excellent and very thoughtful. I liked:

18. Thirdly, I think it my duty to comment briefly on the absurd notion which has appeared in recent days that Charlie has been a prisoner of the National Health Service or that the National Health Service has the power to decide Charlie’s fate. This is the antithesis of the truth. In this country children have rights independent of their parents. Almost all of the time parents make decisions about what is in the best interests of their children and so it should be. Just occasionally, however, there will be circumstances such as here where a hospital and parents are unable to decide what is in the best interests of a child who is a patient at that hospital. It is precisely because the hospital does not have power in respect of that child that this hospital makes an application to the court, to an independent judge, for a determination of what is in that child’s best interests.

and on mediation:

20. Almost all family proceedings are now subject to compulsory court led dispute resolution hearings. I recognise, of course, that negotiating issues such as the life or death of a child seems impossible and often will be. However, it is my clear view that mediation should be attempted in all cases such as this one even if all that it does is achieve a greater understanding by the parties of each other’s positions. Few users of the court system will be in a greater state of turmoil and grief than parents in the position that these parents have been in and anything which helps them to understand the process and the viewpoint of the other side, even if they profoundly disagree with it, would in my judgment be of benefit and I hope that some lessons can therefore be taken from this tragic case which it has been my duty to oversee.

I'm finding the blaming of the US scientist Hirano is making me uncomfortable. He can be criticised for things he did wrong but I just don't like the casting around for "who is to blame?". It puts me in mind of CA.

nauticant, he is too blame though, for giving the family false hope, if he had not, this would not have gone on as long as it had and also had he come in January and treatment was given and failed the family would not be thinking what ifs.

GavelRavel Agreed, even someone doing GCSE biology knows the importance of mitochondria, they are the cell organelle that is mentioned above all others, at the most basic levels of science. 'Active transport across cell membranes, muscular contraction, the entire body system, liver, kidneys&c relies on mitochondria.

Now at 6 pm news CG is being broadcast saying that with treatment Charlie could have been a ''normal, healthy, boy''...yet no one contradicts this wishful statement.

There is definitely someone to blame on this sorry take. The media. Absolutely pathetic they are. Whatever happened to unbiased reporting. Even the fabled BBC in on the act.

Quite often there is nobody to blame. People find it very difficult to accept that some events are just bad luck and occur randomly. None of us like to think that our fragile existences can easily be snuffed out by some chance event.

oakleaffy

Yes. That soundbite is so delusional.

WeDoNotSow

I agree

I have thought all along that this was a conflict between U.K. And US health care systems with the US being money led, thus doctors are prepared to give treatment that are unlikely to help, such as the more than 0% possibility of improvement Dr H said.
I really don't know enough to understand that there is more to it than this. From GOSH and Prof Winston's point of view Dr H was acting unethically but is what he said and was prepared to do unethical in the system he works in?
I really wouldn't have thought he would have been prepared to compromise his career by doing so. But hopefully more facts will emerge as things calm down a little.

'false hope' this is a very emotive phrase. Dr Hirano is a scientist and deals with research which doesn't involve emotion. He was expressing his opinion as a scientist and just that.

But the parents aren't scientists, hence them thinking treatment could have made him a 'relatively normal boy'.

Hello all.

What a very sad afternoon. Like many posters I am feeling that DR H and the others who co-signed the letter must bear some responsibility for prolonging this sad saga.

I haven't RTFT but what I've understood is that GOSH have criticised those who gave the parents false hope i.e. Hiram. Is that correct? So basically saying this guy has been talking out of his backside from the other side of the Atlantic and when he actually came to GOSH, he was proven wrong?

Is it not problematic that the statement by CY named the Italian expert who visited last week?

On a more general note, thank you to all who have contributed to these threads. I've learnt a lot from this discussion.

When all is said and done, I do feel so dreadfully sad for CY and CG today.

of course. and it's a particularly complicated biological process, not even at the cellular level but at the molecular level. not at all easy to understand or explain of you haven't studies science gradually from GCSE days. I'm amazed that nobody has managed to demonstrate it believeably to either the parents of SM at large by now though. I couldn't do it but a lecturer or tea her surely could?

I doubt CA or prats like garage have made any attempt to understand it though. I'm sure the parents have. it really is a fundamental fault for poor Charlie, and he is very severely affected, as evidenced by the degradation (running out of mitochondria) hapenning so early by eight weeks. there was never going to be a cure or a normal life.

I'm with you Incitatis. And also see that SomeDyke posted before me about needing to avoid scapegoating. I definitely agree with that.

Bear in mind that GOSH, being aware of the possibility of litigation, will also be spinning to put themselves in as good a light as possible. They could well be justified in what they say but they have their own interests in this matter and what they say should be considered in that light.

I think the social media have played a big part in the agony of the case by indulging in over emotional and innacurate information. It's the sort of thing you expect from Fox News not the BBC or Telegraph.

Charlie Gard would never have been a normal healthy boy. The 'experimental' treatment has never been tested on humans. He would have been no more than a test subject at the cost of millions of pounds.

I'm pleased the parents have finally accepted the devastating outcome that was surely going to take place anyway. They have not failed him in any way. No one has. Every effort was taken to ensure Charlie Gard got the best treatment. No one is to blame.

The only barrier to Charlie's treatment was the rapid onset of the disease he suffered. And that was catastrophic and painfully unstoppable.