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 also don't think this isn't the end of the case. Having read GOSH's statement, and having just read the statement CY made in court in full (from the Charlie's Fight page), it's plain to see that there has been no acceptance of what the medical professionals have been saying about poor Charlie's condition.

GOSH's statement was very concise. It gives me hope that any litigation brought against them will be rebuffed. Hirano doesn't come across in a positive light at all. It's a shame the media will ignore 99% of what was in GOSH's statement, and yet focus soley on CY's statement.

I do feel for her, she is a grieving mother and her statement makes my heart ache for her.

Bloody hell. Reading the full statement rather than just those few tweets. I'm even more convinced now that that was extremely unfair on GOSH.

Chris Gard currently reading a statement on SKY news

Her lawyer shouldn't have allowed her to speak. Not today.

Normally the lawyer would speak for her. I suspect the reality is that Armstrong wasn't prepared to say these things on her behalf.

Gosh's position statement is excellent - lucid, clear and compassionate. It also coldly and factually sticks the knife pretty deep into the esteemed Professor Hirano. It's a very worthwhile read and I hope every journalist reads it.

They also reaffirm their commitment to doing their best for Charlie's whole family in his remaining days and working with Connie and Chris.

I hope the GOSH statement is picked up properly in the media reporting. I'm out now too I think, thanks for the threads which I've found really insightful and educational.

I cannot believe that there was no brain damage all the courts saw the evidence from gosh. Gosh did not say he was brain dead but catastrophic brain damage. Have I missed something?

11. In the months ahead, all at GOSH will be giving careful thought to what they can learn from this bruising court case that might enrich the care it provides to its most vulnerable patients and families. It is hoped that those who, like the Professor, have provided the opinions that have so sustained Charlie’s parents, their hopes and thus this protracted litigation with its many consequences, will also find much upon which to reflect

Poignant

Again blaming time.... a shortened version of what Connie said in court

I agree, Ceto. That wasn't an outburst, that was a planned speech.

Gosh's statement is also heartbreaking in its detail of Charlie's condition. It states that since January or so, he has had no capacity to experience pleasure, but that he still evinces stress responses and two experts in the last week observed what they believe are pain responses.

Please keep this thread up.

Chris Gard giving statement outside High Court. Strongly implying that Charlie could have been normal if treatment given in time..

Saying 'he won't make his first birthday' and asking for their privacy to be respected at this time.

They are so sorry they couldn't save him.

Sweet dreams our beautiful baby

CA then shouting in the background 'justice for Charlie'

ifs

I wonder if the family ever really did understand that he was terminally ill, that no treatment would ever give him an ordinary life?

F F S

Oh God

That statement. She really believes it and that's just very very painful.

Paragraph 10 of the GOSH statement (my emphasis)
10. 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.

ceto i have to agree with you there. GOSH's statement certainly sounds like they came to an accord with CG's lawyer, and i doubt he wanted to make those sorts of comments in court where it will be scribed

OMG - still watching Sky news and CA shouting so loudly 'justice for Charlie' it's hard to hear the reporter!

They are still very much in the belief that GOSH didn't do enough.

shocking statements from C&C on Sky just this minute. I am so sorry for them, but they are clearly in such a fog of grief, they are still clinging on to 'he could have been a normal little boy' if treatment had commenced in Jan... and the crowd chanting 'justice for Charlie' in the background.

I really hope the news reporters mention the statement from GOSH as well as that from C&C