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.

Agree completely with your last post Puzzledandpissedoff

GavelRavel The thing with Biology/biochemistry is that everything in the body is linked..At GCSE students study ''The Cell'' ''The Kidney'' ''The Heart'' as separate units, but of course everything is interlinked ..and at the highest level of study it is very complex, and moving fast.
esp genetic engineering type things, according to a friend.

CY is said to be 'an expert' in mitochondrial depletion, but without a solid grounding, could one really understand?
If she did, surely she would realize how dire the situation is, and how unlikely Hirano's treatment really was to work.

The Piston heads forum [linked to from MN a few threads back] had a guy who explained mitochondrial depletion in a very basic way, with analogies that made it understandable. Tinsel said he was ''good at mansplaining

Searchable by googling ''Piston heads, CharlieGard''

I've just read GOSH's final statement and I'm in tears. Poor Connie and Chris, and poor Charlie.
I've had conflicted feelings in the last few months, some of them have even been judgemental of his parents, to my shame. But I do know that they only ever wanted what was, in their head, the best chance for their little boy.
I wish for them both the strength and the resolve they will they need to say goodbye. Poor Charlie. It is the absolute right decision for him. But that doesn't make it any less sad.

The Piston heads forum [linked to from MN a few threads back] had a guy who explained mitochondrial depletion in a very basic way, with analogies that made it understandable. Tinsel said he was ''good at mansplaining

I don't want to speak for tinsel but I don't think that was a compliment.

I wouldn't rely on those explanations; they were pretty heavily debunked here a few threads ago

goshs fb pag has thir statement an theyre still being slatd

why is it peopl believe one side over anothr

Just saw that Connie has shared the Italian specialists name in the photos of their statement on CA. I assume that still doesn't mean I can name him

This from the judgement made today:

I remind myself, and others listening to this judgment, that the nucleoside therapy for
which the parents had been contending has not even been tried on mice with the same
strain of mitochondrial disease from which Charlie suffers, let alone humans.

whats the consensus do we make anothr thread or did somone make a group somwhere else

I wonder if any of the million + donation will go to the Gard's lawyers. Unlikely given that they worked pro bono.

I am sure it will be given fully to a foundation/charity to research mitochondrial disorders.

That might be in the USA though. Although I would really hope that a significant portion might be donated to GOSH for all the tender care given to the child and further research on their part. Let us hope so.

Doesn't look like it from today's speech from the dock.

I think it's glaringly clear that even if Charlie did not have muscular atrophy, the treatment would not work. I'm glad the judge made that fairly obvious.

People mentioned it before, but just as a reminder:

You can donate to GOSH.

donate.gosh.org/

Or, if you can't afford that, a nice, positive comment on their Facebook, in the comments or sent directly too them.

I think it's important to show support for them. They were passing kind messages onto their staff at one point. I'm sure it helps.

I think it Hirano (H) may be a situation of miscommunication and 'dropped balls'. My understanding was that Connie had communicated with Hirano and lay the case before him as she understood it. At that point H said 'yes, it may help'. And there it stopped. So his 'yes' was theoretically based on 'tainted' information. And at this point H goes back to his research, thinking he's provided information and no one is arranging with him to come over, so they must not be interested. If he had come over then he would have said 'No' then. Then months later this all kicks up in court and H comes over, sees the truth and says 'No, it won't work. It never would have worked".

Do I have it wrong?

Also, as Mumsnet HQ said the thread can stay, who shall make a new one?

I imagine OP won't want too if they don't want wish for the discussion to continue, and that's understandable and their choice. So I assume someone else will make one?

I'd say keep it going "in the news" but make a different title and a link from here to keep the flow going.

Sorry not up to me to say that's just my view.

I think another thread would be appropriate.

The parents do, after all, need all the help and support in this time. They probably have been unwittingly caught up in a media circus.

But perhaps leave it for a while. They did ask for privacy now.

CY is said to be 'an expert' in mitochondrial depletion, but without a solid grounding, could one really understand?

I'm sure she's studied it feverishly since Charlie's diagnosis but she doesn't have a medical background or the relevant university degree to properly understand it. It's been less than a year since he was diagnosed, there's a limit to how much you could possibly teach yourself as a layman in that time.

I imagine the money raised will go towards the charity they have said they will set up in his memory?
Or maybe towards "Charlie's law"...!!

A Charlie's law would be terrible.

Each situation like this is individual.

A 'law' would be far too generalised, and a horrendously bad idea.

Give parents full right with medical decisions = decisions being made for parents, NOT the child who has their own separate set of rights.

www.mumsnet.com/Talk/in_the_news/2988154-Charlie-Gard-15-Future-implications-arising-from-case?watched=1

Another thread, if anyone wants to post ...

Sweet dreams Charlie. God/Mother Nature/the universe/whatever you believe in can be a real bitch sometimes. To see the beautiful bright eyed smiling baby he once was..compared to after the disease ravaged his body, leaving his poor little limbs bloated and his eyes dead. To see that happen to an innocent baby is just so brutal and its no wonder that so much anger and blame has been thrown around.

But I'm also not totally comfortable throwing dr H completely under the bus. He's probably just a clinical egg head who isn't particularly compassionate or socially graceful..and after searching far and wide for anyone who would help, CY happened upon this particular dr who told her that sure, MAYBE it could help in some way. And he got dragged in deeper than he had previously imagined. No doubt he made mistakes. Also, as an American it really is more brutal and money based over here. To hear "he had financial stakes in this case!!" I think, well yeah?? Cause that's how it is here
But I'm also uneasy with ANY group being held on a "can do no wrong" pedestal and the other blamed. It stinks just as bad as when CA do it. Mistakes were made on all sides , some smaller than others, and it's a heartbreaking emotive case.
I'm not prepared to denigrate anyone but the US pastor and band wagon jumpers.

I just feel so bad for the Cs. Horrific. I look at my baby playing beside me and shudder to even imagine. I can't.

thanks puzzld

charlis law woul never be pas it would overul the child welfare act so it just wouldnt work

But perhaps leave it for a while. They did ask for privacy now

Connie has been posting just now on the CA page, I wonder if she is finding it hard to let go of her support network.

I find the CY/ CG statements reduce my sympathy though. I don't doubt they truly believe what they are saying, but find it difficult to understand that level of delusion.

I have every sympathy with GOSH. I hope there is no further litigation, but there is a bit of me that would like them to have the right of reply.

No winners.

I'm sure she's learned a lot about it since he was diagnosed, but she isn't and logically can't be an expert in it in the way GOSH and other specialists are because her non medical background means she doesn't have the breadth of medical knowledge to support what she's learned and be able to make extrapolations. If she were an expert she would understand that it has always been a futile battle.