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

Went to a funeral recently, of a woman who had been a heroin user [heavily] for decades.
At her service, it transpired her heroin use began after a cot death.
That made so much sense..I never realised beforehand, as it was never mentioned.
She had had zero support in coming to terms with the loss of their baby, according to a relative at the service.

My mum died when I was two, but a neighbour in later years said ''Your mum was the only person who talked to me, who didn't cross the road when our son died''
The death of a child is the worst fear of any parent, no surprise it is still a 'taboo'
People are more likely to sympathise with you over a deceased pet than for a person..

sorry for your loss zaphod

Think post a right dig at judge imo

Sostenueto

www.facebook.com/lauragard?hc_ref=ARTPhfn8u3XTrgYML00D9vf1vSAuyADLAdJMo50i3uy7y1bCDmNuExZSOIJ1toEF2Lg&fref=nf

But a lot of posts seem to have been deleted.

CA can protest all they want. It won't change anything. There is no backlash that will change the application of the law. We, fortunately, live in a society where the law counts. Not yet a society that is lynched by social media.

Oh they will try to delay it Ellie without a doubt.

I don't think there'll be riots from CA, too many armchair warriors

I think the boy will be used for religious and political means for a long time yet though, which is more scary and dangerous than riots IMO

I could see congress attempting to pass a bill banning gosh having research links in the USA.

Sostenueto
The judge's ruling will have to be watertight, so GOSH don't find themselves in the same situation as before.

It depends how the family take it. If there put out a murderer type statement that will only fuel the problems.

I do sort of feel so very sorry for LG as well as Connie and Chris. I have 2 nephews and a niece and they are incredibly precious to me. I see in them my big brother as a child and feel a connection to them that is unique and special. If they were in the position that Charlie is in I would be as distraught an Aunt as Laura is.

There is also the knowledge that she may well carry the mutation as well and so run the risk of passing it onto any children she might have.

We are kind and understanding on here to the parents - and quite rightly so, but we also have to understand that the wider family are also experiencing pain and grief as well and so we should extend that understanding to Laura.

However much most of us did act differently, or would have acted differently, they are going through this and most of us, at this time, are just discussing it.

I say this because I still remember my newly wed brother, who was 5 months away from being a parent himself, sitting by my son's cot in GOSH NICU with tears running down his face, in absolute pain and grief as the life support was turned off. I remember his further pain when being told that it might have been something genetic (these were the days before genetic testing and counselling) and the fear that the next baby in that cot, on that ventilator would be my nephew.

Genetic diseases do not just affect one child. They affect the entire family.

I would not like to be that judge right now. I would be very surprised if he rules that Charlie should go to America for treatment. I imagine he might allow Charlie to go home or to some sort of hospice to spend his last few hours or days with his parents.

I imagine he might allow Charlie to go home or to some sort of hospice to spend his last few hours or days with his parents.

I really don't see how

how could he order for CG to have a staffed home ITU set up just so that he can be extubated there when everybody else's baby on futile life support has to die in ITU

That would be incredibly un-just, IMO

If the judge decides that the child should slip away after ventilation is removed I doubt that there will be any ARMY or worldwide campaign now.

Where is all this anger etc. against GOSH and the Judge on MSM ? Very little that I can see.

It is only a small cohort of people who are actually invested in CG really.

Not the worldwide or national thing that we might think.

I can't see that going home or to a hospice would be any more possible than it was previously. Apart from the massive security risk it is sadly going to be an absolute given that if the judge decides to stick with his original ruling the family will not accept it and will do everything possible to resist it.

I can't imagine how horrible this waiting must be for the family, these must be days of absolute agony. I hope very much that the judge, whatever his decision, plans this carefully to be as easy on everyone concerned as is possible.

Surely laura gard can understand why a judge cannot let his emotions rule in a court of law? It seems that a lack of common sense is prevalent here. My post was took down after a few moments but Ellie saw it I think and I asked her to clarify statement she made. Professional present judge with evidence and he makes judgement on that evidence. She seems not to understand the role of professionals or judges.

If I was Charlie's mum and I knew what judgement would be ( which she must know having attended clinical meeting) I would ask for charlie to be put on palliative care this weekend so I could say goodbye in dignity and peace.

As far as I know, hospices can handle a lot of different things, but they do not have ICU wings

For charlie to go, he'ld have to be off active life support I think, and if he was off active life support, he wouldn't last long enough to go

I think.

It's another "just"
"just" let them take him to a hospice
okay, but how?

I guess that's what I meant, that if the judge decides to stick with the original ruling (which I do think is what the outcome will be), that he will try to make it as easy as he can on everyone. Maybe that won't mean that Charlie goes home or to a hospice if it's not practically possible or would set a precedent which can't be kept for other patients, but I do think he'll try to arrive at as compassionate a ruling as is possible in this awful scenario.

I don't think it would be the judge's role to define what the best palliative care would look like, that would be the job of the palliative care team.

I cannot see what benefit there would be to Charlie in going to a hospice, even if it were practically possible. To all intents and purposes, the hospital is his home. He has spent most of his life there. It is what he is used to. He was eight weeks old when initially admitted to hospital.

these "just" s need to be explored and turned back on the family rather than trying to explain the "no"s to them

"can't we just bring him home?"
"How do you see that happening? with the tube? after the tube? have you found a home ITU team who will remove the tube for you in your own home"

• then they'ld have to say no themselves

"can't we just bring him to a hospice?"
"do you have a hospice with ITU/anesthetist services in mind/lined up?"

I'm not on FB so I don't see the various pages. Has CY gone a bit quiet on FB since the clinical meeting this week?

As far as LG's various 'thunderclaps', who really knows how 'tight' a grip she has on reality. At least on the reality of Charlie and his prognosis. Or perhaps she's 'stepping up' on FB at CY's behest because she was cautioned after the meeting to 'zip it'.

And in the midst of it all, I see this poor little baby hooked up to machines with no real future. It's gut-wrenching.

I'm not a medical expert by any means, but my uneducated opinion is that either Dr H will have completely backtracked on his opinion regarding being able to make a substantial difference OR that if he is willing to treat, that he is unable to find any facility in the US willing to accept Charlie as a patient and that the red tape and legalities of exporting an untested, experimental treatment out of the US and the red tape and legalities of importing and administering it in the UK would make it impossible to do so on a practical level.

Mr Justice F must be a man of formidable courage and conviction. He knows he may end up having to unleash a shit-storm of controversy, anger, and abuse on himself and the wonderful people at GOSH who have devoted themselves to the welfare of children. I really feel sorry for him.

One of life's hardest lessons is that sometimes we have to learn to accept the unacceptable. It's part of being a human. I don't say this lightly as I lost my first husband to cancer when I was 27 and we lost a baby a year previous to that. Grief changes you as a person, but it is possible to find a sense of peace after a period of time.

We, as a society are very removed from death now. It is the biggest taboo I think.

I'm not on FB so I don't see the various pages. Has CY gone a bit quiet on FB since the clinical meeting this week? No, she's been reading about herself on the sun newspaper's facebook page and trying to argue with nasty posters on there along with laura