Charlie Gard 14

[GabsAlot]

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

BB, I had huge sympathy for the parents until I read this -
"We would have appreciated it if when they put out their statement they had asked the public not to say anything hurtful to us as well as their doctors and other members of staff."

Could they not just have put out a statement they do not want abuse of the doctors? They almost detract from the latter by adding that bit at the end.

This is not about hurtful comments made about the parents. It is about illegal death threats made against doctors and nurses who day in day out treat sick children at just about the best children's hospital in the world.

Sadly the case has been high jacked by particularly American interests when in the UK we do not have the same issues and views on many of these things.

@ Writerwananbe83

I think as part of our profession we accept that grief, anger and fear will make people sometimes behave irrationally, especially when it comes to families being scared for their children.

This is spot on.
When you love that child with the whole
Of your being & you feel utterly helpless & scared your thoughts & actions may appear 'unreasonable' to others but it's often coming from the feeling of that helplessness & despair. And this often gets directed towards the Health professionals who have told them nothing can be done.
Unfortunately for C&C their despair has been exploited by others for their own motives. I hope there is someone who can provide them proper support.

Unfortunately for C&C their despair has been exploited by others for their own motives.

Exactly. It's the likes of CA, the Pastor, Trump etc who I reserve my judgement for. I can't bring myself to feel anything but sympathy for C&C

That Independent article...how can they think getting a 5 year old on the microphone to spread their bile can ever be right? And these fools have the vote. I despair.

I can excuse the behaviour of C and C and, to some extent, the wider family on the grounds that they are going through probably the worst thing a parent can ever experience. But all these unconnected hangers-on? No. They have no connection to this little boy, and are purely there to push their own agendas and rail against the establishment, or similar bullshit. They really disgust me, and I hate to describe people that way because it's a word that gets thrown around so easily, but they do.

I think showing kindness to C and C should also extend to the wider family at this time

I have a friend who lost her 6 week old baby very unexpectedly - including having to make the horrible decision to turn of his life support. Before she had had him, she had been devoted to her work. Understandably she was in a totally demented state in the aftermath and for whatever reason decided the best thing to do a few days later would be to start plowing through any work emails that had built up in her absence. This lead to (which she is not aware of) horrible comments from her PA and maternity cover of who would do that and they never would blah blah blah.

Who knows who would do what in this kind of terrible situation. There are posts on here that are sailing very close to the wind regarding the family generally. Yes, I have reported them but I really feel compelled to say something on here too; given the proximity of the hearing tomorrow. It's just horrible

There a huge difference between 'hurtful' comments conplained of by C&C and abuse and threats GOSH have reported. It is not reasonable of CY to think that GOSH should ask people not to make 'hurtful' comments, when it is not GOSH that has made this so public or allowed US pro-lifers to hijack this issue (though I do appreciate that CY and CG may have been so grateful of any help it didn't occur to them to question the motives of Ukippers and right-wing preachers in sticking their oars in).
This must be the most awful trauma for the parents, and I do hope someone close to them will provide them with the support they will need to process all of this once it is over.

I think that we must also remember that lots of us have also lost children who are posting on here.

And that lots of people with dying children are being affected by the wider family's actions.

I sometimes feel that they are not considered at all and some have posted that on the GOSH page.

But if you resort to social media and do not take professional advice you will end up with awful people out there taking control of it for their ends. It is a dangerous thing to do and unfortunately everyone appears to have been swept up into it with no calm heads or caring counsellors giving advice. I agree it is unbelievably sad but totally predictable. Good professional advice could have stopped some of the hangers on gaining positions of influence and stating the most awful lies.

friendly - that is (of course) very tragic but my point remains that every person doesn't not react to every life situation in exactly the same way. Therefore criticism of the parents is not fair and not kind.

Good post Bubbkes. I think that indicates a lot about relationship between parents and medical team.
As someone previously mentioned, the statements and actions speak volumes to how difficult this has been for GOSH. However sympathetic I am to this awful situation, I'm finding the constant critisisn of GOSH for anything they say/do or don't, grossly unfair. It's very entitled and nasty.

Gobbolinothewitchscat for your friend, and the judgements in her actions in the aftermath of that are shocking.
I hate it when people say "I'd never do that" like that makes them a better, more caring parent. How would you know?
Thankfully you've never had to be in that position, so have no idea what you'd do.

When I was in a similar (but not identical) position to your friend, a few days after I took my DS for a picnic on the beach and also finished my dissertation. I needed something to distract my head and occupy my thoughts constantly, and while I never heard criticism directly, maybe some people thought it meant I didn't care because I wasn't acting how they thought they would do. Fuck them.

LogicalPsycho

Quite logical. In no way can the actions of the vast majority of CAs be condoned but those two poor parents look utterly broken.

This is the beginning of the end now - God love them all

Nobody knows how they'll act when they're subject to grief, it's just not something you can predict at all. Some people throw themselves into their work, some decide to hide away from the world, some decide that things are much too painful for them and others band together.

We can't say, 'oh I'd never do xyz' but how do you know?

to let commnts stand like

its auschwitz again and someone should shoot thm

sorry i dont feel sympathy-laura could hav takn it down straight away but she didnt

This is more than reacting to a terrible situation imo. Even with influence, agenda or pain, most people manage to show some degree or empathy and kindness.

Well this was my point gabs, but seemingly anything can be excused.

.There a huge difference between 'hurtful' comments conplained of by C&C and abuse and threats GOSH have reported.

I thought so too- Think they are mainly referring to comments on news stories & SM posts like FB posts as CY is often on there defending their stand- I am sure they find the comments hurtful but their spokesperson's statement mentions they are hurt by comments like 'they need to face up to the truth'- now that is merely people expressing a difference of opinion. And since its been brought into public domain like this with so much of worldwide media attention (which I know they had to do intially to fund raise) it is inevitable people will show interest & comment & not everyone will agree with everything they say/do.
And though they now say they have never publically slated GOSH they have called them liars several times & said things like 'they are not experts on Charlie's case' when infact CG's consultant supposedly is.
I think C&C are so vulnerable & kind of gullible - they don't see the connection between what they say & do to how their supporters the so called CA react.

Does being in a situation like this excuse all behaviour? Do people truly think that?

And does no one care about the other parents there going through a similar hell?

I don't, pomegranate. Not at all.

We will probably never know how truly awful this has been for gosh staff and the other patients and families.

And does no one care about the other parents there going through a similar hell?

I imagine thinking about other families doesn't even register with C&C. They're in their own bubble of hell and I doubt anything outside of that bubble even enters their thoughts.

As for everyone else, I.e the CA, photographers, the Pastor, the Press, Rally members etc, they should care about the impact they're having on the other families there but I don't think they care about much else apart from their own agendas....

Actually, I think people are being very restrained in their comments, gobbolino due to the (likely necessary) censorship by mumsnet.

I don't agree (let's say, as a very general principle, for the purposes of those monitoring the thread) that parenthood should be sacrosanct.

My own restrained comment:
I should have liked to see the family wholeheartedly and a bit more vigorously CONDEMN the threats against GOSH staff, rather than saying they "did not condone" them.