Charlie Gard (16) Future implications arising from case

[Puzzledandpissedoff]

If anyone wants to post, perhaps we could consider what implications today's case might have for others in future ... ?

I totally agree with whoever said that it was a 'romanticisation' of death, I suffered a bereavement and needed to have some counselling for a bit - the counsellor was talking to me about the idea of a 'perfect death' and that sometimes we just need to accept that that may not be possible.

Saucery

Yes

This is all so undignified and unnecessary.

So very glad that there have been lots of lawyers, scientists, medics, HCP's etc on these threads. So helpful to have a full idea of the facts.

Nina As stated, most following this so closely are doing so because either they, or someone close to them has been in this agonizing position, but has let their beloved child go.

It just came on Radio 6 that they want to take him home to give him a bath and out him in his own cot weird news flash.

put him, I mean

I'm sorry, but I really feel that the parents have no understanding of their son as being his own person, a separate individual. Yesterday afternoon I found myself wondering in what other circumstances adults would be praised as brave for finally stopping a course of action which was acknowledging to cause suffering to a baby.

And now this. No, just no.

I cannot imagine what is going on in their heads. I do not know why they seem as a pp poster pointed out, unusually impervious to facts, but they have, for months now, been acting in a way which is causing suffering and harm to Charlie.

officeshoes very few people will die, compos mentis in their sleep at 90. Wish it were the case though.

Nina I've no problem with you posting dissenting views but I really wish you'd do your research first.

Numerous posters on this thread have been in exactly the same position and managed to not call down a media circus and crowdfund millions into personal bank accounts. So be careful before you assume no one here has the experience you believe we lack.

Secondly Francis J is an entirely appropriate way to refer to him. If you're not legally experienced Google is your friend.

C&C have a good deal of money to pay for private care and all that goes with it. But as others have said, chances are they aren't going to find people willing to do what they want, as they want it done. GOSH probably would be more than happy to let private resources take over IF there were a legal timetable. As it is, they are probably worried that if Charlie leaves their care and control, that his parents will pay to keep him ventilated until their funds run out. Even at a cost of £20,000 a day (which I pulled out of my arse), they could afford to keep him 'alive' for around two more months with their £1.3 m.

That is certainly NOT in Charlie's best interests.

Agree Oakleaffy I was closely involved in an end of life support decision with a family member and have been involved with GOSH hence my interest. Most of us aren't just rubbernecking or whatever that dreadful phrase is.

I've been quietly following 16 threads but just now I feel I have to pipe up. This is awful. Inhumane. I don't know what I can say or do but I just need to express my horror at the situation. I wouldn't put a dog through what those parents are putting Charlie through. Yep. I fully expect to get deleted. Fuck.

Me neither Maryz. Said on the news just now family refusing to talk to the hospital - how on earth can it possibly work?

I don't know who is advising the parents now but this is not thought through at all. I understand they want their private moment with Charlie and away from the place they view as tainted but even if they pay for private care at home what happens if Charlie's ET (breathing) tube becomes dislodged- this requires expertise to be replaced and can be distresssing? What if the tube cannot be replaced and he arrests- this would not then be a peacefully managed slipping away whilst being cuddled.
Charlie will continue to suffer needlessly if he is given days at home. This is sad beyond words that the parents cannot be reached with rational discussion much as I have every sympathy for them.

The Catherine Glenn-Foster tweets are much more flowery in their detail than Rozenberg. She is @cateici

I agree friendlysnake

catin hugs xx

I wish Gosh would just tell them to get to fuck, its disgusting what they are doing, never ending circus around a terminally ill baby, where the fuck is this babys dignity???

*Today 15:26 officeshoes

Nina you clearly have not followed all the threads, there have been many posters on here who absolutely HAVE been in their position,. I suggest you go back and have a read. That's why these threads have been so informative and at times heart rending.

I have skimmed some of it. To be honest, anyone who has a life other than in this place, would find it hard to devote so much time to thread after thread after thread.

No one here has had the same experience as Charlie Gard's parents - having an infant with infantile onset encephalomyopathy mitochondrial DNA depletion syndrome (MDDS).

I suggest you do not try to patronise people.

This is just outrageous