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.

Connie has been posting just now on the CA page

Hang on - do you mean literally "just now", or the one I referred to from 4 hours ago?

It depends on what she is posting.

It could be please leave us alone we want to grieve in peace and have some privacy now.

I get they want privacy.

But another issue is that if we do not have one, main thread someone will start another somewhere (or multiple) and it's hard to keep track of.

It's better to have one set, moderated thread than many. At least this way discussion is in one place and respectful.

I also agree with other posters that we need somewhere that is a safe and respectful place to discuss the case. Elsewhere online can be horrendous- no moderation, much harsher comments- so its good that somewhere exists where the parents/GOSH are not discussed negatively.

The comments here are balanced. I think the discussion has been mature and I've been amazed at the experiences shared.

To anyone with an ill child who has shared their story on these threads, or those whose children have passed away, thank you. Your perspectives were invaluable and my heart goes out to you all.

Sorry, yes, she posted four hours ago, photos of her statement to the CA page.

Hopefully when that has been seen and digested, the page will be taken down.

across the pond

I think the issue with Dr H is his willingness to testify in court without making sure he had the full information. That's a bit more than 'yes it might help' informally to a parent.

Hi everyone, yes this is the place to discuss the far reaching aftermath of this case. This is a responsible place with intelligent, compassionate people to be on. Such a tragic case as this i fear could lead to more. We need a place that is moderated so reasonable discussions take place.

Amd I was not at all suggesting that Dr H or any other doctor in the US would take advantage of any patient but rather pointing out the difference in approach.
I don't think there are any winners or losers in this situation and nor should there be. No right or wrong either so am trying very hard not to make judgements.
He did say, as far as I am aware, on a previous occasion I think when the possibility of his treatment being used for Charlie was first raised that he would be prepared to treat him although the chance of success was vanishingly small.

I don't believe that Dr H was that willing. In court he fell to bits under cross examination and when the judge said for him to come over to see Charlie he was very hesitant to do so. He did not even read notes and info from last court case so to me it seemed as if his original statement in the first court case still stood and he didn't seem that interested in the case IMO.

A quick apology in case I've done the wrong thing and shouldn't have started the next thread until this one was within its very last posts

Anyway, here it is: www.mumsnet.com/Talk/in_the_news/2988154-Charlie-Gard-15-Future-implications-arising-from-case?watched=1

That will probably get deleted but it was not meant to be negative, I think he originally thought Charlie could not be helped even though he had not seen Charlie. He is well known to gosh and has worked with gosh so he trusted gosh who themselves are world renowned.

Amd I forgot to say he added with the approval from the FDR.
I think I have probably said too much about this. I was really just trying to point out that there may be different approaches in different countries rather than trying to blame any doctor or system.
Then I further tied myself in knots trying to explain what I don't really know enough about to comment on.
So I will desist.

That's fine puzzled we will go there when this one is full and thank you.

Hirano was not overly optimistic. He gave facts from his treatment of other patients. He admitted to not seeing Charlie, to not reading the court case, to the fact that his treatment was of another disease.

If you look at the whole "1 in 10 chance" that Charlie could come off a ventilator as being a 'good' chance, you can see that what Hirano said could not have given the impression of Charlie living a normal life. Furthermore, Hirano admitted that he himself could not make decisions on Charlie's brain damage.

I'd say Hirano gave his unbiased medical opinion. It's how you interpret it, whether you see it as positive or negative. To some a one in ten chance of coming off a ventilator might seem a great step, to others- including me- it is very little.

Got to charge battery and my emogees are working again.

Spot on flower.

Wouldn't it be better to use the new thread to discuss the implications of the case and leave the parents alone now?

I too am very surprised that CY is actively posting on FB..maybe it becomes compulsive?

Re Hirano and his statistics : the old saying is ''There are lies, damn lies, and statistics''
How would Hirano know what the percentages were?
He hasn't used this 'treatment' before on anyone with Charlie's condition.
A 10% chance of it improving Charlie's life flipped means a90% chance of it doing nothing.
The fact that he hadn't even visited GOSH to see his potential 'patient' or read the Judgements to me showed that he wasn't really keen on having Charlie as a patient...maybe he got a ''get out of jail free'' card with the neuropathy diagnosis?

My gdd 15, is now watching a programme on statistics....I really worry about that child!

Mediation whether judge led or independent ethicist before it gets to court is a great ides, and this is what the judge was trying to do in this case. It failed because the relationship between the medics and parents was so eroded. A mediation team should have been set up the minute the parties couldn't see eye to eye. Long before it got to court, but if one party refuses to listen what can you do?

10% chance of improvement
define "improvement"
provide evidence of 10%

90% chance of it doing nothing or worsening his condition
And that's before defining "improvement"!

Hear other cases are in the pipeline. The NHS won't be able to cope with this too many times. it will break the NHS then what will happen then? There is a Charlie's fund being set up with money raised to help families take NHS to court to fight for the parents to gave rights. It was posted on CA fb.

Have