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

Exactly, WeDoNotSow ! (post at 12.55)

post at 12.50, not 12.55 sorry Sow

I've just seen the update on the daily mail. Funny that CA aren't all over it...

I don't think just dge Francis will care much if the petition was a million, I don't think anyone can influence his judgement can they?

The press are like a dog with a juicy bone, they won't let go. This is so sad.

Thats the fact that seems to be missing on all the news reports isn't it GOSH aren't with holding this treatment, they were going to give it until he suffered brain damage.
So although it may improve his mito condition it won't heal any brain damage.

I really don't understand the importance of the US residency/citizenship stuff. How on earth are the parents going to stay there long term even if the treatment does have some success.
My ds was in the NICU of a major US children's hospital for 2 weeks and on a ventilator for about 5 days of that. Aside from a course of antibiotics he didn't need any other treatment. Total cost about $150k. Fortunately for us it was covered by our insurance.

But he won't be eligible for insurance (and even if he was his care could still run into the 10ks per year in copays/deductibles) and realistically will be in and out of hospital for the rest of his life even best case scenario. I don't believe for a second that any US hospital will treat him for free indefinitely.

I think it was mentioned in a previous thread that even of the doctor waived their fee, you still have to pay for the bed and the nurses care

Yes plus a whole load of other expenses.....

Very rough timeline of my interpretation...

• Charlie admitted unwell and diagnosed with MDDS (query, info possibly not in public domain though - at this point did gosh think it was myopathic only?)
• Gosh apply for ethical permission to use unregistered nucleoside therapy
• Before permission is granted, Charlie begins fitting and brain damage is observed (speculation - this may be the point that encephalomyopathic type was diagnosed)
• Gosh state potential treatment is futile
• parents disagree and take gosh to court
• money is raised to theoretically take charlie to US. If he had been permitted to try the therapy initially, I don't think the money would have been needed?
• court say no... and you know the rest...

The costs are massively overinflated too so even simple blood tests cost $100s.

Add in accommodation costs for the parents plus up to $30 a day parking.

Can the USA insist that Charlie be moved??? sounds dreadful if so...

Let's say for the sake of argument that a child was suddenly a US citizen in this situation.

That would mean that he was a dual citizen and the US would have no power while he was in his other country of nationality.

As he is a minor, his birth nationality can't be renounced for him (it's his birthright). In any case you can't renounce a nationality while you are in the country of that nationality, as far as I am aware.

Basically the whole nationality argument is based on a bunch of misconceptions about what nationality actually is and what it's good for.

(Personally I have lived for many years outside my sole country of citizenship, perfectly legally, as a permanent resident of the country in which I live. Many people think that you must have nationality in order to live/work somewhere, but it's definitively not true; you don't even need permanent residence.)

All of this, in any case, is a red herring and as said above, this baby and his loving parents are being used as political pawns in other people's power games. It's sickening.

if anyone wants to add me on Fb PM me for my name would like to backup people if need be or just chat

Newspapers reporting on the tweet are scraping the barrel rather IMO, if at this point there is no other verifying source and no mention in any official record of citizenship being granted. Plus if it were true, wouldn't Trump be claiming credit for making it happen by now?

Probably entirely wrong but found this comment in the Independent interesting.

The US basicly gave this family a refugee status acknowleding there is a physical life threat for them if they stay in Europe.

oh ffs thats ridiculous

that comment not you smiling

Really unpleasant how the papers are spinning this to make GOSH the bad guys. I hope to God they are mis representing this and it's not the case in court that the US dr is saying yes, it will help and GOSH have to say they're not convinced/don't agree as that is not going to help the family in any way.

I would say that given the sudden media action from the parents again, that the US Doctor has backed GOSH and the parents aren't happy. Why release that photo otherwise? I just don't see how the Judge can authorise GOSH to turn off life support though and the parents agreeing, which will mean removal of them from the bedside and that's just unthinkable now. I can see him being moved to the Italian hospital as there is no other option and a media blackout on any further reporting. That way, the parents are out of the country and out of the media attention when the inevitable occurs and that won't be long after moving such a sick and fragile child. That way takes the heat off everyone, including Chris and Connie.

Have been quietly following... Forgive me if I've missed this info in previous threads but can anyone tell me the best-case scenario if he were to have this treatment?

I don't understand how that Independent article has been approved for publication. The sources seem dubious at best, but even if we assume they are legit - they are using "permanent residency" and "citizenship" interchangeably despite them being completely different things. And then, even if it was citizenship, not residency that he'd been granted it still wouldn't absolve him from the UK court system, because he'd still be a British citizen.

I can see the Judge giving Gosh the Right to switch the ventilator but GOSH delaying it because they do not wish to undertake it while Chris and Connie are unable to accept it and when it is possible the President of the USA will call them a murderer.

can anyone tell me the best-case scenario if he were to have this treatment?

cabbage, that's pretty much what the debate and court case are about: GOSH says (wildly paraphrasing here) that they don't believe that any further treatment would be in his best interests. Nobody can really say what sort of improvement could reasonably be expected, and that's the crux of the argument.

Cabbage
From my understanding, there will be some increased muscle function.
However, nothing will reverse the brain damage.
Also, I believe in court Dr. Hitano states he believed Charlie was in the 'terminal stages' of his condition.

*Hirano

I can't actually believe this is still going on! From what I understand about the "citizenship" they have been granted permanent resident status so they can go there for treatment but if i understand correctly the treatment still needs to pass FDA standards which could be another 3 months of not years, are they expecting Charlie to hang on for that long?