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.

I wonder what will happen to the relationship between Dr Hirano and GOSH now.

To some doctors, a patient is just 'a case' and there is no interest taken other than that of a physiological function. I expect doctors learn of cases the world over and are able to select those which may further their cause in terms of research. He seems to have responded somewhat lethargically to this case then made a bigger effort when pressed, but didn't expect everyone to be so invested in the case and to react the way they did.

But this isn't normal in the UK. Just like the rights of the child that exist in the UK and not in the US.

The US MSM and political right that have been causing havoc with this would be well advised to realise how out of order their house is. Even the bloody president doesn't seem to understand COI wrt financial things - he hasn't exactly divested himself of his hotel group has he to seem squeaky clean.

Institutions normally retain the financial interests in medical research in this country. I know my NHS trust has a clause that if I invent/ discover anything while in their employment they will take the proceeds...

I cried when I heard the news. Both with sadness for Chris, Connie and Charlie but also with relief that Charlie at last will be at peace

I just want to clarify that it is not uncommon in the US for a researcher to retain a financial interest in any pharmaceutical they develop

Is it common for them to apply for the patent for the treatment they are researching ? In the sense, is that the usual financial interest they retain ?

I read the statement from GOSH with tears in my eyes. The parents may think that Charlie stood a chance, but deep down and with some time and perspective, I hope that they will accept that their son was always going to live a short life. I have deeply questioned my faith in the legal system with this case, and can't help but wonder if the parents hadn't made the right decision, just how this would have gone.
I wish them all a peaceful next few days and hope this doesn't drag on now for all of their sakes, least of all little Charlies.

Digesting the last couple of hours now and would it be totally far fetched to think trump is involved with Dr Hinro getting involved?

JaneEyre70, I agree xx

Also from the parents statements I'm not sure they have at all come to this agreement. More that there was no choice of Hinro removed his support it would work.

Hirano is to blame for spinning a line of false hope.
He didn't even come and see Charlie, and why did he consider treatment 'futile?'
Because of ''what he'd been told by GOSH?'.I don't believe GOSH would lie, they have no reason to.The deep denial is still there, the unshakeable trust C&C have in Hirano's 'treatment' to magically transform Charlie into ''a normal little boy''?
None of the other children with Charlie's mutation are walking about, are they?
Baby James mentioned in a Daily Mail video had the same mutation, and died, his parents said that nothing could be done.It is a very touching one minute video, well worth watching, a sit shows a polar opposite in beliefs.
Baby James's father had a peacefulness about him..maybe as he hadn't had false hopes raised?

No words to express how sad this is and for the other 21 children that die every minute of every day

Having finally caught up on all three documents which have been released this afternoon - C&C's statement, GOSH's statement and Justice Francis' judgement - I can only say that I feel heartbreakingly sad for Connie & Chris - moreso because they have not been able to understand or accept the clear truth of the situation. I fear that this will haunt them for the rest of their lives and they will never gain peace. I grieve for them.

GOSH's statement was excellent - so well worded, clear, concise, unequivocally critical where criticism was necessary, and yet also, so very gentle and kind towards Connie & Chris.

The court judgement I also felt was clear and, in my mind, cannot be argued with. However, in spite of that, I am in no doubt whatsoever that litigation will follow this sad, sad event, and that both GOSH and the Gard have a whole lot more heartache and stress to come by way of the judicial system.

Very well said Jed.

im battling away on twitter trying to get gosh statement out there mayb i shold tweet tabloids

I thought GOSH's statement was wonderful and rightly so implied Dr H has a role to play in how this whole affair came about. I don't think C&C or the CA will take it on board though and Dr H will always be the hero and GOSH the enemy.

I'm still confused about the earlier brain scans though - is it correct then that actually Charlie's brain damage wasn't as bad as what GOSH had said?

This seems to be what the whole 'negligence' concern hangs upon and I just can't understand how there can be such a discrepancy as GOSH having said the scans showed irreversible, catastrophic damage yet Dr H said they were typical of a normal boy of Charlie's age. It doesn't make sense?

h said himslf he wasnt an expert so how he could say that i dont know

I'm still confused about the earlier brain scans though - is it correct then that actually Charlie's brain damage wasn't as bad as what GOSH had said?

Unlikely. He's got a defect on a cellular level, the damage was cellular. You can't see that on the MRI. EEGs also need to be correlated clinically, and Hirano himself agreed that the EEG was a picture of severe epileptic encephalopathy.

From p11 from the judgement...

"The world of social media doubtless has very many benefits but one of its pitfalls, I suggest, is that when cases such as this go viral, the watching world feels entitled to express opinions, whether or not they are evidence-based"

Hi OP,

Thanks for reporting. We're going to leave this to stand, because we're mindful that people want to discuss something that's so heavily in the news at the moment; and in any case - if we remove this thread, another will soon be started in its place.

As ever, Talk Guidelines apply - please all do keep these in mind when posting as we don't want to have to stifle debate.

If there any posts that cross the line, just let us know, and we will take a closer look.

Which body or organisation will issue the guardian's statement? Does anyone know?

Agree with oakleafy...this poor families suffering has been x100 than what should have been due to Hiranos false claims. Why on earth would you claim you could treat a patient you haven't even seen? Rather than an example of the failings of socialised healthcare this should be a warning to the U.S. of the terrible pitfalls of a healthcare system where money seems to be the main driver. It's so tragic for them. they will always be haunted by that false hope and the thought that it could have worked if given earlier.

What a terrible day today has been for C and C. It would appear that they have been considering their position over the weekend and I can see and hear their agony. That agony can only have been compounded by the weekend row that exploded over threats and CY's statement. That said, I am horrified to see the huge gulf in opinion that still exists between Gosh and C &C. This gulf will not help them over the next few days as they say goodbye to Charlie.
I am horrified to hear that Hirano is still willing to treat Charlie (according to CG) and commend C and C for taking the decision they have in spite of this.
I do wish that the press/tv would weight the statements of Gosh, Charlie's parents sand the court judgement equally (as 2 differ significantly from the third) rather than just keep rerunning the desperately tragic statement of CG.
I think the case has been a tragedy for every party involved...but most of all has potentially caused months and months of suffering for all, especially Charlie.

The comments on SM are unreal. I've seen one American woman claiming that the treatment is "widely available" in the USA. FFS.

What is SM?? I'm hearing it heard a lot

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