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.

GOSH will survive Connie's statement, as will the doctors involved. Its great work will continue. The protests outside will die down for lack of 'fuel', CA will disband or move on to the next 'cause' and leave GOSH alone. For GOSH, life will go on and it will do great things to help blur the memory of this awful time.

But C & C will never know peace. They'll continue to think that Charlie could have been 'riding his bike' and every birthday, every anniversary of his death will bring these reminders to the front of their minds again. The media will contact them for interviews and statements whenever there is a remotely similar case in the news. People with pro-life agendas will use their son as a talking point and seek their backing.

As irresponsible as her statement might have been, I can find very little anger for Connie. She will carry this anger and erroneous belief probably for the rest of her life.

well, it's upto MNHQ whether they think it should now be closed or not.

for little Charlie.

I too would like thread to continue. Those who feel it has run its course are free to move on

People could stop posting or hide the thread if they feel the discussion has no continued point. It was never a place for declaring 'winners' and isn't now.

samesorrystory, I guess so, but it feels wrong, this family are comming to terms with their babys death now.

Mucky I've really enjoyed all your contributions. I doubt the parents will be reading any of our thoughts though tbh

What a dignified and measured statement from GOSH. I hope it is given due consideration in the media.

All the best to everyone.

Poor little Charlie, poor Connie, poor Chris. Whatever you think of the decisions that were made at any point, surely there's nothing to be directed at the family now but massive, massive sympathy. I hope they have some peace at this awful time.
I can see where some of the criticism re Connie's courtroom statement is coming from but come on, this is a mother who has spent the last few months fighting (far beyond the point most of us would think is reasonable) for her son to be kept alive and treated: she's just agreed to stop fighting and to say goodbye to her baby. Give her some leeway. Grief is not often logical and sensible and reasonable. Grief is shit. Don't condemn her at the worse point of her life.

thyr having a go on goshs pag now

Yes the statement is good

On the positive points :
J Francis said (according to the JR tweets) that evidence should no longer be accepted from medics who have not examined the patient.
excellent news - will stop many similar cases

and the issue of appropriate tests - if he stops parents blocking non invasive tests (like MRI and EEG) then this situation could have been clarified months ago.

If those two things come out of this case, Charlie's suffering will save many other families from what has just happened.

People could stop posting or hide the thread if they feel the discussion has no continued point. It was never a place for declaring 'winners' and isn't now

Absolutely, never a winner.

I wlll Pm anyone with the new foroum once it is set up later tonight.

Has everyone seen the hospital's new position statement? Hirano ought to be hanging his head in shame.

I think this thread can be allowed to fill up but by agreement there is no Charlie Gard 16?

Gierg Thanks for that

Statement 10 from the Position Statement is pretty critical of Hirano:

"When the hospital was informed that the Professor had new laboratory findings causing
him to believe NBT would be more beneficial to Charlie than he had previously opined,
GOSH’s hope for Charlie and his parents was that that optimism would be confirmed.
It was, therefore, with increasing surprise and disappointment that the hospital listened
to the Professor’s fresh evidence to the Court. On 13 July he stated that not only had he
not visited the hospital to examine Charlie but in addition, he had not read Charlie’s
contemporaneous medical records or viewed Charlie’s brain imaging or read all of the
second opinions about Charlie’s condition (obtained from experts all of whom had
taken the opportunity to examine him and consider his records) or even read the Judge’s
decision made on 11 April. Further, GOSH was concerned to hear the Professor state,
for the first time, whilst in the witness box, that he retains a financial interest in some
of the NBT compounds he proposed prescribing for Charlie. Devastatingly, the
information obtained since 13 July gives no cause for optimism. Rather, it confirms that
whilst NBT may well assist others in the future, it cannot and could not have assisted
Charlie"

That is very positive Peece

Yes, the idiots are attacking GOSH on their page again. THAT is why this thread should remain, as somewhere else to counter the nonsense and show support for GOSH, which is where many of us came in from in the first place.

Is the GOSH statement linked on here?

If it helps I also think this thread should be closed.

I would like the thread to remain or another one to be started.
I really don't think this is over and to me this thread has been a voice of sanity in considering a situation that may, could and in some cases has affected pp.

Where is it Penguin?

friendlysnake

I linked it further up but here it is again.

www.gosh.nhs.uk/news/latest-press-releases/gosh-position-statement-issued-high-court-24-july-2017

here we go - trump - socialized medicine kills - what a vulture