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.

Here is some detail from paragraph 7 of GOSH's statement:

Even now, Charlie shows physical responses to stressors that some of those treating him interpret as pain and when two international experts assessed him last week, they believed that they elicited a pain response. In GOSH’s view there has been no real change in Charlie’s responsiveness since January. Its fear that his continued existence has been painful to him has been compounded by the Judge’s finding, in April, that since his brain became affected by RRM2B, 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.

Whatever else may happen now, one poor little boy who never had a chance will be allowed to go quietly. Perhaps the funds raised will be able to help future Charlies as well.

This thread so needs to stay, many many issues running from it - one of the most heartbreaking stories of our time.

FlowerSour

It has struck me throughout that the BBC still has the same picture of Charlie on its website. Not the most recent. The ones that show him as he looks now. The one where it's still possible to believe he 's just sleeping and will wake up and live a full life.

I too would like for this thread to remain.

This case has opened up scars for a lot us who have contributed to these threads and has helped to make sense of some of the issues that this has highlighted in society today.

I cannot find it in my heart to condemn Connie for what she said today, but I do condemn those around her for exploiting these parents grief and anguish. I fear that those people, going forward, will continue to do so and that this is far from over for all of us - especially GOSH who have behaved with dignity and compassion throughout.

It is a sad day today and those of us who are lucky enough to have happy, healthy children will hug them a little tighter tonight.

Thank you for the link to GOSHs position statement.

They are in utter denial, I feel so sorry for them but omg poor GOSH

So glad the legal case is over. That the parents were allowed to have some ownership of the decision, and I hope that it helps them find some peace.

CY has posted pics of her and Chris's statement on the CA page.

I thought I'd read that the hospital did offer the family counselling but it was refused.

GOSH's statement makes a lot of sense, and emphasises that the two people (presumably one of them was Hirano) who examined Charlie recently thought they elicited a pain response which would (unfortunately) agree with the hospital's conclusions.

Interesting that GOSH firmly say that the parents were "led to believe" the treatment would give Charlie a chance. Again, the subtext that Hirano and others were doing them no favours.

Absolutely. My heart is broken for the parents, but I feel nothing but contempt towards those who have used and manipulated them in a time of distress to their own end. They have been severely let down in this process - but they should be looking at those who surrounded them, not GOSH.

I totally agree re all the 'sweet' pictures of Charlie, just so emotive.

This is the best decision they could make for their son. But it's so, so sad and my heart goes out to chris and connie who must be utterly broken.

Sostueneto

It's upthread only a page or two

Pastor has been commenting on his FB page, also posted a photo from inside court, is that allowed?
Absolutely not allowed in the UK.

maybe an excuse to deport him ???

Ta1kinPeece absolutely

Have you seen Chris' speech outside the Court? I wonder if it's the same as Connie's in court.
He stated the most recent EEGs were interpreted by Hirano and the other experts as 'relatively normal' for his ages and that had he been treated sooner Charlie could have been a normal healthy little boy.

He made it clear that time wasted killed their son and that his disease would have been treatable...

Yamayo, Hinaro needs suing by Gosh, for what he has done to this poor family, for breeding negativity for giving them hope when there was none!!!

Identities- I hadn't realised that. That's not right either. It shows him aware, 'healthy.' It doesn't show how ill or helpless he looks now.

But the media will choose what side to appeal too. And they're going in the direction of anti-GOSH sadly.

That said, I'd hate to see any news condemning the parents as well.

"feel nothing but contempt towards those who have used and manipulated them in a time of distress to their own end. They have been severely let down in this process"

Yy!

Statement now in full (video) on CA's page.

I've just watched a live statement from CG, I do feel so sorry for them, after everything is said and done they are about to go through one of the worst things imaginable. I truly hope the media leave them be to try and come to terms with whats happened.

Have only just caught up with the threads which have made interesting reading from the point of view of ethics, parental responsibility and rights, power of social media for good and sadly for bad.

I have a foot in both camps as a medic and own sad experience.
So sorry for you Nellie and others who have experienced such pain. I agree with your views on Connie. My heart goes out to her it really does but she has been sadly misguided and convinced herself that her son had a chance of a rewarding life rather than just existence but in my view parents will react very differently faced with these heart-breaking circumstances. She feels such anger now genuinely believing that her son could have been given a chance but was denied it that she is lashing out. She did what she felt she had to do and sadly I worry that she will never know peace because she will never accept the premise that the encephalopathy was so severe that nucleosides would not have given him a meaningful chance.
From experience the staff will have grown to care deeply and bond with Charlie too. I am fearful that damage will have been done that destroys parents' faith in those making decisions in such cases and I hope there may be some way of addressing this in future.
This should not have been played out in the media with people with no expert knowledge interfering. Too sad for words. I truly hope the parents, staff and Charlie now find some peace and I hope the family do not intend to sue for their own sakes as well as the dedicated staff.