Charlie Gard 12

[muckypup73]

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:

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

They are still really pushing that petition, I have read through it to see if there are certain people pushing it, I would have though there would not be much point a this is the judges decision and that is it?

not

Yeah even if it reaches a million then what. Judge is hardly going be influenced or anything because of that so don't get it.

Gets them feeling like playing a part I guess.

This is such a terrible mess isn't it. I really feel for the family, I'd be fighting for my child in the same way, under virtually all other circumtances. However, I trained as a molecular biologist and did a thesis on mitochondrial DNA depletion and, even with that doctor's possible treatment option, which is very, very preliminary, it really is obviously a situation with virtually nil hope for improvement for anyone that understands, at a genetic and molecular level, how DNA depletion syndrome works and the effects of a mutation in the particular gene that this baby has. But of course it's a huge ask for his parents to have that level of detailed understanding, though I'm sure they're a long way there now, without extensive scientific training, never mind all the misguided people on social media.

Even if the experimental nucleoside treatment did offer some improvement, it would never have been anywhere near a cure and would have to have been tried very early on, before his condition had deteriorated so much and brain damage and other body damage had occured due to the lack of cellular respiration, to have had any significant benefit. I wish that they had been able to give it to him last year, futile as it would probably have been, so that they could have been able to say they'd tried everything possible. Then maybe they'd now be more able to let him go and it wouldn't all be such a mess. I don't really understand why that couldn't have happened, given that they had raised the funds and he was at one point less gravely ill? Even if he wasn't able to fly, couldn't the treatment have been bought over, given that it is an oral preparation as I understand it? I'm almost convinced it wouldn't have made a significant or lengthy difference, as are the GOSH specialists obviously, but the problem is if/when treatment is withdrawn, the family will always wonder and they and all the CA will always have this misguided anger. Can the doctor be given permission to now bring his treatment over, so they can say they've tried? (I know it's not that simple and requires approval etc but surely not impossible)

Even if he does get citizenship that won't change the fact that the judge has categorically said that he can not be removed from the country.

You can still complain for a misleading headline - if what is stated in the headline isn't even implied anywhere in the main text. As they have done before.

Gavel, gosh were in the process of seeking ethical authorisation for nucleoside therapy when Charlie started fitting and it was then determined it was too late and treatment would be futile. Which the court (and hirano initially) agreed.

Maybe I am wrong but I thought the application was for C,C&C to be given US residence not citizenship.

Also considering Connie's knowledge of Charlie's condition and comparing it with those parents who have to become experts to obtain a diagnosis for their children.
Autism, as far as I am aware, and certainly the condition my DGS has (I have custody of him and had to fight for a diagnosis in order to get him the help he needs) are not diagnosed clinically.
When my DGS was first seen by a paediatrician he was quite overawed and reacted very little to him. Therefore the initial diagnosis was largely based upon my description, experience and knowledge of his behaviour.
Charlie is unresponsive and thus his condition can only be diagnosed clinically. Connie I am sure has a great deal of knowledge of his condition. However she is not qualified to perform tests and interpret the results of them.

Gavel, gosh were in the process of seeking ethical authorisation for nucleoside therapy when Charlie started fitting and it was then determined it was too late and treatment would be futile. Which the court (and hirano initially) agreed.
This is my understanding too.
I think this was in January?

Gavel, gosh were in the process of seeking ethical authorisation for nucleoside therapy when Charlie started fitting and it was then determined it was too late and treatment would be futile. Which the court (and hirano initially) agreed.

ah, I see. That makes a lot of sense. Hardly murderers or deliberately obstructive really are they? I don't think there is a lot of understanding of all this out there. The reality seems to be that this poor little baby just deteriorated really quickly because of the nature of his mutation and there wasn't time. In hindsight maybe they should have gone ahead anyway to prevent it all from getting to this stage (and given that the parents were willing to pay for it?). Where does it end though I suppose, treat everyone with everything irrepective of quality of life.

Yes, the full timeline re GOSH considering nucleoside therapy, then Charlie's deterioration is detailed here

www.bailii.org/ew/cases/EWHC/Fam/2017/972.html

So Dr. Hirano spent '5 and a half hrs' trying to convince GOSH.
So, not examining medical records, or test results or anything like that.

That is correct, WeDoNotSow. It was considered in January but GOSH considered his deterioration was too rapid and there would be no benefit. The USA Dr agreed with them, as has been reported in Court.

When is it in court next?

Of course he examined the baby and saw his detailed records. He had seen them before of course. There was a discussion the following day!! Do keep up!

Friday 21st there will be a directions hearing, don't know if press will be allowed attend
24th/25th judge will rule

Completely off topic but there certainly are clinical diagnosis routes - pretty complex, multi disciplinary ones - for the diagnosis of autism. A formal diagnosis isn't done simply from one peads observation

If that was directed at me Bubbles, I was being sarcastic.
They are reporting that he spent five and half hours 'trying to convince' GOSH.

At the time the treatment was first considered in January, or even before, they did not have the money to pay for it!! That is why they started to raise money. The child deteriorated but C and C would not accept this. This is what the whole case is about.

Could people please read the thread before asking when the next hearing is in court. Repetition is getting wearysome! It is written in my post above. Try reading it.

OK thanks for new link. Place marking lurking but not much strength today. Xxx

Ah..looked at Indy page, they are covering their backs by saying ''Charlie Guard has reportedly been granted citizenship''

So what implications does this have?

The first implication if this is true is that he cannot travel immediately, US citizens (even duel nationals) have to enter and leave US on US passports.

WeDoNotSow: sarcasm is difficult to detect on this thread. It is better if we try and stick to being open with each othe and say what we believe.

On the citizenship/residency thing, I think there's been a misunderstanding.
I think that the vote referred to is an early stage in the process, not a final decision.
Disclaimer here is that I know nothing about U.S politics or this process and am just offering my impression.
There is nothing, at the moment, about this in either the New York Times or the Washington Post. Both have been covering Charlie's case.

Sirzy, we ended up striking lucky as school bought in an ed pych that was the person that took part in multi disciplinarys and he said that ifit went to panel my son would be found to be autistic, along with other reports that showed lack of theory of mind ect was how we finally got the diagnoses,otherwise to this day I am sure we would not have had one.