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.

CA are still blaming GOSH as they believe if he had been treated earlier there may have been a chance.... I think the group now needs to be closed and let this family grieve in peace.

Oh FFS. This is nowhere near over. The 'window of opportunity' being over was WHY gosh said no to the treatment after initially applying to do it

The window of opportunity was lost back in January. Back when GOSH decided the nucleoside therapy they'd already applied for was no longer appropriate as Charlie's encephalopathy became apparent.

Why will there be litigation?

Just the words Armstrong is using. It is clear that they still believe that Charlie had a chance.

And if he had a chance, and it wasn't taken, the question is, why not?

I sincerely hope I am wrong, and today I just feel relief for little Charlie.

Must have taken so much courage to come to this point over the weekend.

They are discussing the 'window of opportunity' quote on Sky News now. I hope his parents leave this now, but the wording is squarely laying the blame at GOSH/the courts for delay.

Cheby, I agree that Armstrong is trying to frame it around GOSH delaying. Which is despicable, IMO.

GOSH were looking at treating him before he deteriorated, the window of opportunity closed before it had barely opened

I hope GOSH are going to be allowed to respond to this. The narrative is being clearly set out that had they not fought this through the courts Charlie could have been saved.

armtrong asking if parnts powr should b increasd

no! thats th point of this case

Oh you are fucking kidding me?

A lot of anger across all social media.

The parents couldn't sue. As they have been refusing scans for months. If they had allowed scans in the past few months, than this case would of concluded much earlier too.

I understand poor Charlie was beyond help in January, hence the court case raised by GOSH.

Thinking of Chris and Connie at this difficult time. Hope they get the privacy to say goodbye to their son. :(

So sad but absolutely the right decision. I hope the 'supporters' leave Connie, Chris and Charlie in peace over these last few days. I really feel for them.

I agree "window of opportunity lost". Yup it was lost when he deteriorated when the ethics application for novel treatment was still being prepared.

I am deeply concerned about the later tweet: Armstrong inviting the judge to think about whether parents' power should be increased in such cases

What increase parent power when the doctors feel they aren't acting in their child's best interests. Surely this case shows that this is why our laws are so important.

It is eminently possible that there will be children who come along after Charlie who get earlier treatment off the back of this case and Hirano research who go on to do well. Sadly it is always the case that some people are born too soon for medical technology to save them.

This is life. My grandfather died very young of ischaemic heart disease. Nowadays he wouldn't have died when he did but the technology in the 1980s just wasn't that good.

Why is everyone on Twitter blaming GOSH? Do they think they deliberately withheld treatment for the fun of it?! It's an absolutely stupid accusation to make, and now I've been drawn into answering back to them. Damn Twitter!

I just hope that any decisions as to a timeline for withdrawing life support is kept strictly private.

I'm confused: Armstrong quoted as saying that Charlie Gard lost his chance 'due to delay' by GOSH? But GOSH applied for ethical approval for this experimental therapy. Charlie was too ill for it to be used.
What 'delay' do they mean?

What a shame, Armstrong still seems to be adversarial in some respects.

Poor kid has suffered longer than necessary.

They are finally doing the decent thing and letting him slip away.

The parents will face some backlash in the USA from the mad nutters there.

Are the shouters gone from outside court now?

I don't feel angry at all at Armstrong following this line of thinking. The parents are grief-stricken and need to blame someone or something.

I am relieved that all parties have reached agreement on the main issue at hand and that finally a very very sick baby will be allowed to rest.

Yes their lawyer is framing it as a 'GOSH are at fault, if Charlie had treatment earlier he could have been saved' so more legal fights to follow I imagine, even after Charlie passes away