Issues raised by the CG case 11

[Venusflytwat]

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):
http://www.gosh.nhs.uk/file/23611/download?token=aTPZchww

7 July GOSH statement on Charlie:
http://www.gosh.nhs.uk/news/latest-press-releases/latest-statement-charlie-gard

June 2017 Supreme Court decision:

May 2017 Court of Appeal Decision:
http://www.bailii.org/ew/cases/EWCA/Civ/2017/410.html

April 2017 High Court Decision:
http://www.bailii.org/ew/cases/EWHC/Fam/2017/972.html

GOSH FAQ page on Charlie:
http://www.gosh.nhs.uk/frequently-asked-questions-about-charlie-gard-court-case

Tinsel you are so right, there are no winners, the parents will lose their son even if he does have the treatment, charlies loses his life, and its lose lose all round for the parents, I do feel for them.

I think Charlie will end up being sent to Pope's hospital in Italy- that's probably why the Italian specialist was there- they may say something like that Charlie is too unwell for a 6-7 HR flight to US. Atleast he's not been identified in media and he hasn't got his reputation at stake like Dr Hirano's is now. That will probably also make Chalie's American AUL supporters happy.
Just Read the dailymail article linked earlier- they have to mention 'twice married Dr Hirano' - How that's relevant at all in this case is beyond me!

Am finally delurking to say how interesting and informative these threads have been. I've just had a look at the Charlie's Army USA Facebook page and many of the latest posts are surprisingly rational - much more so than when I looked a few days ago.

jingle no othr hospital will take him thyve asked

If I was CY I'ld be very very wary of getting into any sort of arrangement where CG was moved to a catholic hospital.

Once there they won't get to change their minds, or have him off the ventilator down the line if treatment didn't work. And he could be kept alive artificially indefinitely no matter what! It's happened before (not in this country thank god!)

would that apply in usa though bubbls u cant make anothr country accept our law

To be honest I think it's somehow worse the Pope intervening than the US politicians.

I really hope they don't try to have him transferred to a papal hospital, although I am assuming that they would need the courts consent to do so.

If Charlie's parents wanted to carry on with treatment in the US they would need extremely deep pockets. They currently have enough to pay for around a month, I reckon.

I think it's a bit of misinformation that the pope "intervened".

If you read his statement it basically said life must be preserved where it can be, but we must accept we can't always. And he hoped charlies parents can be with him til the end.

He didn't come out in support of c &c .

Really doubt the judge will send him to Bambino Gesu. Not only has there recently been large scandals with allegations that the care of the children has not come first, the original question was whether Charlie would be having intervention withdrawn, or whether he would have a trial of 3 months treatment, and be allowed to pass if there was no improvement.

Bambino Gesu would completely get rid of the second option because he wouldn't be allowed to die peacefully, they'd refuse to turn things off even if treatment wasn't working.

it's out of her hands now isn't it

if SHE now said "okay, I sat in on the tests and the meetings and I want all this to stop" BUT the US and italian docs presented convincing evidence about treatment option to the court, would he then end up having treatment against the parents wishes?

Yes I too do feel really sorry for the parents. I saw the video collage of Charlie's pics and it made me feel so sad for C&C- they provably haven't fully accepted that most likely scenario is that Charlie is going to die - they are clutching onto their dreams for the child they had and truly believe this drug has a 1 in 10 chance of being a 'miracle drug' for their son ( 'there is a potential he can be completely normal boy, we don't know', 'we want him riding a bike' etc)- that is not at all what their own appointed American specialist said in court- he wasn't even quoting those stats on same condition as Charlie & admitted this was totally experimental.
When my initially normally developing DS regressed & was diagnosed with autism I remember how I felt & how much in denial I was initially and how long it took me to accept it- it's easy to hate the messengers and trust people who give you hope (however small the hope maybe)- I know it is not same as being told your child will die, but when a diagnosis of autism caused me so Much grief & denial ( as we too had very different dreams for our child's future and it was all taken away with the ASD diagnosis) I can't imagine how these parents have felt when their child who was normal till about 8 weeks of age was diagnosed with this devastating condition. It's sad to see their grief & denial exploited like this. Hope they find strength & some sensible people who will support them- not the ones who are planning a protest party like CA!

I think it's a bit of misinformation that the pope "intervened" An itialian doctor has though, he was in the meeting today. He wasn't directly sent by the pope so it's all got a bit muddled, also he hasn't gone public

I wonder what happens if CG were allowed to go to US, gets FDA approval for trail and after few months the US Doc says it's not among any significant difference but parent's insist they have seen a difference and he is not suffering etc and they want to carry on?

I'm in the US. The doctors can withdraw from his case as they are not required by law to treat him. If he is in a persistent vegetative state (which it sounds like he is to me) the hospital must keep him on life support and feeding/hydration until the parents say otherwise but they don't have to try new treatments.

Usually at this point, patients in PVS are transferred to long term care facilities. The problem with Charlie is that he will presumably not have US health insurance and it's unknown whether or not he'd qualify for Medicaid once the £1.4 mil runs out.

If Charlie was determined to be brain dead, the hospital can apply to the courts to have all life support removed, even over the parent's objections. The parents would be free to move Charlie to another facility, but again cost would rule as to whether or not any other US facility would accept him. Some religious institutions might as in the Jahi McMath case.

Yes, the bambino gesu, and i think dr's from it, have waded in.

Not on the pope's instruction though.

If c&c want him sent there, where babies die from lack of hygiene, they are crazy.

@Really
Pope tweeted only that but others from Vatican got in touch with family, got some 7 experts to send letter to GOSH & asked for transferring him to Bambino Gesu, even considered giving him Vatican passport.
I think it was after Pope's intervention that Trump got involved and then all the AUL etc! I think it was that AUL president who was responsible for targeting Charlie's guardian's lawyer VBC - as they are ideologically opposed to what compassion in dying represents- couple of days before thy story hit the newspapers she posted on her Twitter page- ' Major CG story coming in 24 hrs- wait' or something on those lines- she even tried to imply VBC is Charlie's guardian when someone corrected her!

no tinsl as at is stands the original court order stil stands until th judge makes a decision

Aargh! More "light the world blue for Charlie" thunderclaps on CA, shared this evening by Laura Gard. For some reason these posts really annoy me - I know I keep going on about it on these threads but the buildings are not lit blue for Charlie! Why why why are people creating these posts and why do people, most of all Laura, believe it?! It is cruel and very weird. We are truly in a post-truth era. People just do not care about the authenticity of anything.

no tinsl as at is stands the original court order stil stands until th judge makes a decision

But could that decision go against C&C if they changed their mind re-treatment, but the docs presented enough evidence in favour of treatment IYKWIM?

Its ironic that the premise of C&Cs "fight" was parental rights over decisions about the baby… then they "got into bed" with the Christians who are pretty opposed to individual choice

There seems to be only 3 posts on Twitter regarding the thunderclap. I've responded to them all with the website where the pics were lifted from.

This really annoys me as hijacking another cause ( one that I spend a lot of time promoting awareness for ) really pisses me off.

Acrossthepond
Guess the AUL members who C&C seem to trust & American CA will all probably help CG & family.
After all this fight the parents may find it very hard to let go.

Good one @Hitmonlee 👏

Unfortunately Charlie's condition is very rare, so places with research trials that can have their funding upped if he joins, are wading in. I suspect that's part of Bambino Gesu and Hirano's motives. Neither are world leading in their fields, while GOSH's head of mitochondrial disease is.

Who is this Laura you all keep mentioning & what's a 'thunderclap' ?

Laura is Charlie's aunt. A thunderclap is when they ask everyone to simultaneously share a post across social media.