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

Sostenueto, are you ok sweety?

Morning muckypuppy! Xxxx yes OK thanks and you? Just wondered where everyone was and has anyone heard from lonelymummy lately?

Thanks veryopinionated great informative post.

Sostenueto, I am fine thanks and not hear from lonleymummy, I presume she will be spending time with her daughter x

I think the medical ethics works slightly differently in US as compared to UK.
I do not think Dr Hirano is unethical though he seems to have had some sort of influence from White House who have made him contact GOSH again- Even in the latest hearing he has told in court he doesn't think it will reverse brain damage if it has already occurred, he has repeatedly clarified in court the percentages he is giving is not for Charlie's type of MDDS. But he has also said he would treat Charlie if he were in America if parents wanted it as Charlie he will pass away without any treatment and unless they try the medication they don't know what it will do. Going by the parents statements in the media, I think he might have been misinformed about CG's state by them and he had agreed for potential trial. Even if he thinks it wouldn't benefit CG, I think if parents wants to try the treatment and they ended up in US court, the US law will side with parents (as long as they are not intending to cause harm).
The US government is only interested in this case as they want to scare people of 'socialised health care system where they just let babies die' because they are
trying to stop providing health cover for millions of people. It's ridiculous that they say governments shouldn't interfere with health care and yet WH & now congress (or was it senate who granted CG PR?) is wading into this. If they really wanted to save some babies I am sure there are babies in lots of places in this world where they do not even have basic health care- but no they only want to wade into this to prove how 'bad' nationalised free to all at the point of access health care is.

This is an interesting article that was linked to in the thread :

www.macleans.ca/opinion/the-charlie-gard-story-reveals-what-we-wont-accept-about-medicine/

Yes I have had a couple of rough days too XXX

Hollie that article is fabulous and sums up my feelings on the matter so much better than I could put them across.

It has made me wonder if I feel the same way because I've been ill myself and found that treatment can sometimes be grim (even if it works!). Not as seriously ill as Charlie or the author of that article, but with the experience of being ill and the treatment cycle/meds/hospital admissions. I wouldn't want to be on life support and have said so at the time.

Glad that little ballerina is recovered. Felt so sorry for lonelymummy stuck amid the circus.

opinionated freak Thanks for the info given about transferring patients, and the logistics needed.

@opiniatedfereak
That is very helpful info. I remember a friend who worked n PICU mentioning a family who wanted to try a treatment in US for their child (for whom the NHS team had said it was futile ). They wanted to arrange transfer themselves & team said okay. When it came to actual transfer and organising this the family realised the risks and how poorly the child was and they decided against it.

Yes mommy to my little stars the US has a political agenda about our NHS. They do not understand our wonderful system and our government are hell bent on destroying the NHS by underfunding it and privatising it by the back door. We in Britain will not stand for it and we have been fighting for a long while. No american can understand how wonderful it is to have such a health system as ours. But I'm afraid this case is undermining the NHS and fuelling the already anti NHS press. I don't think Charlie's parents realise what damage they are doing to the very system that has kept their son alive all this while by making it all public.

I can't help but think if he is moved to America, if/when treatment fails there will be a massive crowdfunding appeal to bring him home to die. It will then be back to GOSH's door...

This whole thing is so out of control.

Sostenueto, I hope things pickup for you soon x

Thanks muckypuppy xx where have all the regulars gone mucky?

Havent a clue Sostenueto.

TBH I just wish they would arrange transport privately and go now he is allegedly a USA citizen.

Even if he was a US citizen, which he isn't, he is also still a UK citizen, and he can't go anywhere without the judge's permission. The judge made that clear at the last hearing. I don't think there's any reason why, if the treatment is considered suitable, it couldn't be given at GOSH, so he'd be very unlikely to give permission..

On another point, I don't understand how CY can claim to know as much about Charlie's condition as the doctors, yet not understand that his eyes being open doesn't mean he can see. Is she not taking in anything they are telling her?

I don't think Charlie is going anywhere he is far too I'll to travel. It is such a pity about the treatment. As I said in threads before it has come too late for Charlie and is in its infancy. Maybe in 5 to 10 years it will be perfected. But any hope in reversing brain damage is at least 50+ years away if then. Brain cells do not regenerate, they were never meant to. The brain is the whole essence of who you are, each brain is unique and THAT is why you cannot repair catastrophic brain damage. It is its uniqueness that makes it impossible to replace. We are not Gods even though scientific breakthroughs abound. But the brain, which we know very little about, is something akin to godliness, will always remain untouchable.

DorotheaBeale, I dont think she is, she is probably so greif stricken and does not belive a word the doctors say, which is kind of sad really.

Dorothea - I can't understand that either. It's like there is understanding then a block when it's not what she wants to hear

And so it should. Our humanity is encapsulated within our skulls. It is a Pipedream to think you can repair something so unique without changing that person wholly. I am who I am and I would not change me. We have seen with dementia how the whole person changes and what happens when brain cells die or malfunction. So, even if you could mend a broken brain, should you,?

The www is a wonderful thing, you can read up on anything you want. Doesn't mean you understand it. Connie has probably done a lot of research but she seems not to understand scientific proof of her sons condition. She does not really understand what it would be like to look after Charlie as an adult in the state he is in. She sees a child, she cannot see the future for grief has blinded her and it is such a tragic situation.

Say in theory they do move to America and decide to settle there. By sounds of it CG won't survive much longer or if he does he will need round the clock care. Then what? They live there long term?
What happens in future if they decide to have another child? Will the insurance cover the risks? (Which is 1 in 4) for having a child with MDDS again?
Will they do pre-natal testing? If offered pre-natal testing and they found out the foetus is also a carrier what do they do then? Clearly with friends like that anti abortion pastor & that AUL attorney who fight for the 'rights of the unborn' they won't even have that option. Now that they have thrust themselves into media spotlight, especially once in America it will be difficult to get away from it all.

Think I missed a lot of what was going on mucky.