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

DrH's case for treating was 'if we don't he's going to die' and not much more

RitaMills - I’ll do a bit more googling tomorrow in the hope of finding those episodes I watched. I think those episodes, which I think I may have previously watched some time ago, resonated with me a couple of days ago because of the CG case and so recognising the difficulties of transferring very sick babies. But I have watched other documentaries that have focussed more on the parents, and how frightening it can be, especially when the parents can’t go in the ambulance/helicopter because there isn’t enough room.

I’m a mother of two, and a grandmother of one. I’ve had my moments of worry, but nothing compared with your experience. I hope your DS made a full recovery. I’m sure I’ve watched documentaries about Yorkhill Hospital because, and I hope I don’t sound flippant about this, but it’s the one hospital in Scotland (and I’m in Hampshire, so about as far away from Scotland that it’s possible to be) that I could actually name.

Lunde and JustAnotherSod - I think that’s the series I was talking about. I do watch Pick TV quite a lot. I’ve set my Sky box to record Saturday’s episodes, and if it’s the same series then I might be able to find those episodes on YouTube.

Place marking

Cryogenics! That's the answer. The industry's in its infancy so no guarantees.but a lab may be happy to try out their tech on CG, and the parents are happy for him to be a guinea pig. They have money to pay for it, he won't be suffering or deteriorating any further, and when there's a cure he'll be revivified. The more I think about it, the more I see it as a solution.

I'd be happy to do it, but we're so close to a cure for ms that it's not worth it. And I don't have the money.

Jux not really a solution. He'd have to be legally dead for the process to happen, C+C would not be living if he was revived in the future, and there's no guarantee he would be.

Another one here who is devout (and a scientist). Faith means different things to different people I suppose. For me it was a source of comfort during dark times. And I see God's role (if God truly is interested in our daily existences) as not prolonging a sick baby's pain. I tell myself my son passed away peacefully without pain, and that was the best outcome for him. Every time I cry, DH would ask me to consider who I am crying for; the answer is always that I am crying for me, DH, our loss, our hopes. Not our son because actually he was spared any suffering or pain.

I wish Charlie's parents come to realise that soon. If you are genuinely religious then wouldn't you feel that by passing on, Charlie is just skipping a lifetime of pain in a sinful world? Which is clearly what God wanted since he was born with this condition? All of this is being done to only avoid pain for the parents. But letting someone go peacefully putting aside your needs can also be a true act of love.

Morning all. Does anyone know if press will attend the directions hearing today?

Morning lapin. I'm not sure I don't think so lapin the other one on Sunday didn't have press there . it will be done privately. Hope we can follow court case Tuesday.

My goodness, that prayer. A lot of shouting at God and no listening.

Zaphod that was beautiful & spot on.

This case continues to raise new questions for me and challenge me in so many ways. I'm contemplating the recent posts about the acceptance of death and how we may be shielded from death more these days. It has made me wonder what Connie and Chris's experiences of death have been in their lives so far. Have they been shielded from it and that is one of the reasons they are finding it so hard to accept things now? Or have they had a bad experience which is affecting how they deal with their current situation?

I hope my ramblings don't upset anyone but I do think our previous experiences shape how we deal with things in our life and one of the things that comes across very strongly to me is how this case would never have been in the news had it not been for the parents views of the situation and difficulty accepting it. Unfortunately I now feel that this has now created a pretty impossible situation with the fantastic GOSH staff which is making their whole experience of the little boy's end of life so much harder on them.

Initially I put their views down to the strength of a parent's love and how a parent would do anything for their child and this made me very sympathetic to their cause. But on reading recent posts I'm starting to view it a little differently and thinking it is partly down to their difficulties in accepting death and what that means, and wondering where this stems from. Obviously this is a wildly complex case and it's not as clear cut as that but putting the personal tragedy of it all aside I find it an extremely challenging and interesting case and think it will definitely be discussed in medical ethics classes for years to come.

CA now on an anti vaccination crusade

I've just read a post about them hypothesising who will turn off the ventilator and then they went on to say that the person who does it will probably go on to end their own life because of the guilt they will feel.

Writer, I read that too and thought what a stupid comment. Don't they realise they have to switch off life support practically every day in hospitals?

Its the ignorance of people that I find flabbergasting. I think what planet have they been on all their life? It really is sickening that people on CA are so so misinformed.

Great post beekeeper.

Beekeeper - very fair points raised. I hadn't thought of any of your points. I was (and still am) blessed with my family and their strength.

I think the issue is confirmation bias perpetuated by the extreme policing of posts on the page.
CA are now only reading information that supports their agenda and they believe everything else to be lies or negativity. It's a common phenomenon on social media but this is an extreme case.
I personally think that Laura's posts have been erring on the side of resignation. It will be interesting to see what if anything she posts later today.

We need another thread. I can't post links pucs etc so could someone start a new one in readiness because if this directions meeting today and we have lots still to discuss please.

ZaphodBeeblerox, sorry about the loss of your child, and your are right, the longer charlies parents put it off the worst it is going to be for them.

I've got ramblings :)

I agree - the shielding from death, cover it in hearts and glitter and it will all be alright, the superhuman 'we know nothing but can do anything if we all post a load of bollox on FB at the same time' rubbish, living in a comfortable western bubble with no real responsibility for our actions and huge naivety about the world in general have made our society what it is right now. How did we get here?

A mother who has lost her son to knife crime on the news this morning said ''young people are living through social media''. She explained they are removed from reality and involvement with real people. She's right, but It's not just young people.

A poster earlier said her first thought about the advent of the internet was Wonderful! Everyone will have access to the best libraries, all the knowledge and research in the world spread before anyone who can read. I thought the same - more education, more peace, more understanding. The reality is depressingly predictable: for very many it's too much like hard work to actually sit and read anything. Even if they don't even have to get off the sofa to get a book! Easier to click a button and agree with whoever's shouting loud enough.

Having said all that (that's better!) the hard core CA are a very small minority who, IMO, with slither away once this is all over and I don't actually think GOSHs reputation will be damaged in the long run at all. The vast majority of people see the wonderful hard work and the good they do at GOSH. In a years time how many hangers on on that FB account, if advised to take their own sick child to GOSH by their GP or local hospital, will refuse? None of them i'll bet.

Just read the - anti-vac debate on CA. Hell fire there are no words to describe their stupidity.

Surprised nobody has pointed out that the reason we vaccinate is to protect our children and those unable to be vaccinated - Charlie?

The anti vax brigade are pretty vehement aren't they?

Thank you for all your kind thoughts.

And well said beekeeper and Laiste.

It's odd that we're so divorced from death nowadays. Not just a western thing, I'm from the developing world and nowadays everyone avoids funerals/death in a way they didn't 10-15 years ago.

I remember being 15 and my uncle dying. I fought to go to the crematorium with his daughters even though women traditionally weren't allowed to do so. That, and reckoning with my grandparents' passing, my dad talking frankly to us about the decision to turn off my grandad's ventilator, my own parents firm instructions to us kids that we should do the same for them if the need arose, all these inform my view of death. But if you've been shielded from that all your life then it can be quite a stark shock!