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Charlie Gard 13

999 replies

muckypup73 · 21/07/2017 08:45

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

OP posts:
Thread gallery
10
Lelloteddy · 21/07/2017 12:19

Fresh I think that's the gist of it.
And it's so sad that despite being fully included in that meeting CY is still nowhere near accepting what now appears to be the inevitable outcome next week.
The poor staff on the floor looking after Charlie face a horrendous situation.
I hope that poor little baby is allowed to rest in peace soon.

GabsAlot · 21/07/2017 12:19

tbh is it relevant anyway that c an c have up to the minute notes its about charlie not what thy can intepret from notes from medics they dont believe anyway

reallyanotherone · 21/07/2017 12:19

Surely they've exhausted their appeals?

Otherwise where does it stop? Appealing against the appeal of the appeal?

Ellie56 · 21/07/2017 12:19

Bubbles that's good.

So hopefully next week will see an end to it and all the accompanying media circus.

zzzzz · 21/07/2017 12:20

This reply has been deleted

Message withdrawn at poster's request.

TinselTwins · 21/07/2017 12:23

zzzzz the quote you used said "terminally ill" not disabled, don't you think there is a significant difference?

Living with a disability is NOT the same thing as prolonging the dying stage of a terminal illness

ememem84 · 21/07/2017 12:23

Just placemarking so I can read through later.

DorotheaBeale · 21/07/2017 12:25

They have to be given leave to appeal if the case goes in favour of GOSH. A well respected poster felt there would be no grounds for appeal.

Surely the only basis for an appeal would be something arising from the so-called 'new evidence' which has supposedly emerged since the last round of appeals was concluded? That's why the judge keeps asking (he's asked several times now) for a detailed schedule of all the new material, so he can be sure he covers it all in his judgment and doesn't leave any loophole for C&C to say 'but he didn't consider xyz....'

BubblesBuddy · 21/07/2017 12:26

Ellie. It should be an end to the court case. Media is another matter and depends what the parents do and say next. GOSH will be in a very difficult position with regard to managing palliative care if that is what is agreed.

When I said "leave to appeal" - to clarify: that means permission to appeal. There must be a reasonable prospect of success for permission to be given and it could reasonably assumed that this would not be the case.

Saucery · 21/07/2017 12:27

No, it's not disability, it's medically suspending death against all medical advice and opinion.
I have friends who have an extreme pro life stance. They are not confusing disability with anything else and we respectfully agree to hold our different viewpoints.
Any disablism on these threads should, of course, be reported.

BubblesBuddy · 21/07/2017 12:28

Judge Francis is considering the "new evidence". They cannot keep saying there is new "new evidence". This is the last chance it would seem.

BeyondDrinksAndKnowsThings · 21/07/2017 12:28

Zzzz, Charlie isn't just disabled, according to gosh (I have no reason not to believe them) his organs are failing. He is dying and it will probably be soon, even with the vent.

I don't view someone dying as an acceptable reason to use them as a guinea pig, against their permission and without a realistic, objective belief that it will improve their life. When it could also easily make it worse.

Lelloteddy · 21/07/2017 12:29

This is not about a disabled child. It's about a terminally ill child whose inevitable death is being delayed. To accuse those who believe that this baby should be allowed to die a natural, dignified death as a result of his terminal illness, as disabilist is ignorant and offensive. To suggest that people want Charlie to die because he is DISABLED? Shame on you.

yolofish · 21/07/2017 12:29

I think their grief is going to be even worse (if that's possible?) because of the way this has all gone, and the sense that as well as losing Charlie they will also have lost their 'battle' which they fought so hard and so long.

However, I do hope the judge makes his decision quickly and that poor Charlie is given peace as soon as possible.

TheCraicDealer · 21/07/2017 12:29

Here was a poster on another completely unrelated thread who tells their disabled DC "it's what you can do that matters". That really hit home with me. Poor Charlie can't do anything- can't see, can't sleep, can't hear, can't breathe, can't apparently even think. I wouldn't personally term that degree of incapacity to be a disability, because according to his doctors he has no abilities whatsoever. He is terminally ill.

Writerwannabe83 · 21/07/2017 12:30

I think if you are making a judgement that a disabled life is worse than death then you are being disablist. sad. For some people life will always be the better option.

I understand that.

But Charlie is ventilator dependent, he spends every night and day in a hospital bed unable to move, he can't see, he can't hear, he can't communicate, he's locked in a dark, silent and still world, likely to be in pain and he's likely to be having seizures too.

That level of being disabled can't be compared, in my opinion, to other disabled children who are allowed to be at home, can breathe on their own, can socialise and interact, have forms of communicating and have some joy in their life.

And when you say "For some people life will always be the better option" I absolutely agree but Charlie doesn't have that choice and that's the whole point of the case I believe. Should a baby who is suffering and who has no quality of life be forced to live such an existence for the sake of his parents.

The whole thing is incredibly sad and I can't imagine the pain his parents must be in.

MissHavishamsleftdaffodil · 21/07/2017 12:32

Profoundly disabled isn't at all the same thing as ill. If Charlie wasn't desperately ill and being forced to breathe by a ventilator, being prevented by medical extreme measures from dying with no hope of recovery, it wouldn't matter how profoundly disabled he was, those needs could be met. Its his illness that's the issue.

As pp says; this could potentially be very short, but it looks like the judge is going to let the parents have their two days in court and say all they want to, so it will be another three ring circus. If he's hoping that they will then feel sufficiently heard and valued that they'll be willing to accept a decision, that would help a great deal, but sadly I don't think its likely.

TinselTwins · 21/07/2017 12:34

Don't people realise that to call people who hope charlie is allowed to die with palliative care rather than on invasive active life support disablist is in turn calling parents who have been through the heartbreak of agreeng withe their childrens doctors that palliation is the only humane route disablist

that is horrifically cruel! And is the same mentality that'll prevent C&C from ever finding any peace when charliee passes.

Nquartz · 21/07/2017 12:35

Sorry the thread is moving so fast, but just wanted to comment on the girl on the bike. Is she the one the dad posted a video of her in a cot? I think she improved but still died around 3 IIRC
I can look for the video...

zzzzz · 21/07/2017 12:37

This reply has been deleted

Message withdrawn at poster's request.

Writerwannabe83 · 21/07/2017 12:40

zzzzzz - are you saying you think Charlie has a good life then?

And I'm not being goady, so sorry if it comes across that way, I'm just genuinely interested in your opinion on his situation.

TinselTwins · 21/07/2017 12:40

I do feel a judgement is being made and that it is heavily influenced by what is thought to be "a good life"

That is indeed a really difficult question
nowadays I think most lives can be given quality and enjoyment, thank god.
But I don't think that any signs of life = worth living
Charlie is barely alive at all, his organs are failing, he's on life support, I'm not sure how he could be enabled to have any quality of life at this point, even if the meds now gave a slight improvement or delay in further deterioration.

SomeDyke · 21/07/2017 12:41

"but just wanted to comment on the girl on the bike. Is she the one the dad posted a video of her in a cot? I think she improved but still died around 3 IIRC...."
I have been trying to find information on 'the girl on a bike' mainly because I was concerned that her picture was being used inappropriately, since we seem to have no info on who she is/was, exactly what her condition was, and what her improvement was. Just as a poster girl for CA (there was one other child used in a similar poster, but his image wasn't used again).............

GabsAlot · 21/07/2017 12:42

hs got a terminal disease hes not just disabled

annandale · 21/07/2017 12:44

I have seen some posts on some threads which do appear disablist because they don't list all the things that the baby can't do - so occasional posts saying 'he's on a ventilator so...' Clearly being on a ventilator, even if permanent, does not in itself represent lack of quality of life. No individual group of symptoms or problem does.