Charlie Gard 13

[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:
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

Sorry you feel you need to leave Gin, I'm assuming you mean the thread saying we are all being disabilist? I haven't been back to look at it since it was first mentioned and if it's caused you this much upset I think I shall stay away. Don't let things play on your mind and don't let Internet strangers make you question yourself

GinSoakedTwitchyPony, I hid the thread after the first few comments. It's a deliberately goading thread and under any other circumstances, it would have been deleted.

friendlysnakehere that is so dangerous and monumentally stupid. I do wonder if it is all for show with these idiots and they are just too caught up in their little online mob or if they would genuinely put their kids in danger by boycotting GOSH if they needed it. Either way I truly wish someone would step in and shut this shit down. And although the names of the HCP leaked were deleted quickly you can bet they are being shared via PM, it's senseless, these are real people just trying to do their jobs.

Gin I understand how you feel. I doubt these threads will be taken down, honestly believe that the vast majority of posts have been very balanced. Difficult things happen and as far as I am concerned it's not a crime to discuss and have an opinion on difficult things.
See you next week

Yes friendly It's deliberately goady. It' s also a taat, so no idea why it's still standing.

sorry to hear that gin i just dont read the other thread

if mnhq thought this was inappropriate they would hav taken it down

Daft question but what is a TAAT?

Yes, it's incredibly bad form to start a TAAT under the guise of referencing a MN campaign.

Thread about a thread.

The link that Weeone has posted is invaluable. It sets out very clearly the court process as far as the failure of the appeal. Would recommend everybody reads it.

Thank you!

gin I can understand why you feel that way. Because there are numerous threads and this will have been in active convos for weeks now, it will have attracted attention from many more people who have actually read the threads. And every repeat long running thread I've been on has been accompanied by a bunch of TAATs saying that it's inappropriate and not in the spirit of mumsnet.

There have been a few posts I've found close to the line, and sometimes the eagerness for news could be misread, but I think these threads have been valuable, balanced and important.

Ive repoted the taat twice now and Mn ignoring. , very odd.

wll nxt time theres a taat im going to point out that their rules are flawed

I've been reading along but am delurking to say I just cannot comprehend the accusations of disabilism. Really not seeing it.

Our situation with DS is that he is severely disabled and has a terminal condition which is separate to his disabilities. Ironically Hironi's treatment could potentially help him but it will come way too late. The other experimental treatment has been flatly refused on the grounds that he would not cope and I don't think we are disabilist because we are not planning to argue that decision. The complexities and the suffering he would go through and the need for him to be compliant with lifelong treatment? It doesn't add up for me that it's worth taking the risk.

I've reported it also.

I too am baffled by the calls of being disablist. I don't think it is wrong for people
to say they wouldn't want their child to have brain damage. That isn't to say if they had a child with brain damage they wouldn't love, cherish and care for them. I have supported many parents over the years with children who have severe and life limiting conditions. I have often seen a very real grief for these parents in accepting the child they hold is not the one they were expecting. No one looks at those two lines on a pregnancy test and says 'I hope my child has difficulties.' And to say to parents who are honest enough to admit to that in the process of coming to terms with things that they are 'disablist' is just cruel in my opinion.
At the risk of going off topic I have used the below poem so many times with parents and the relief they feel at being 'allowed' to say 'this isn't what we expected or hoped for' is immense.
WELCOME TO HOLLAND
by
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

From the Family Law Week link I posted a little while ago -

"It was common ground at first instance (and on appeal) that Charlie suffers from an extremely rare and grossly debilitating inherited genetic condition called MDDS. The condition causes depletion of mitochondrial DNA which leads to dysfunction of several organ systems. A dire prognosis of relentless progressive neuro-degeneration was indicated. Charlie had not been able to breathe unaided save for the first two months of his life. If Charlie were to remain at GOSH under the present treatment regime, the benefits to him of being kept alive for the remaining few months of his life were outweighed by the detriments and that GOSH should be permitted to withdraw treatment, providing only palliative care."

A "dire prognosis of relentless progressive neuro-degeneration" - this is what is being lost in the circus. The treatment will never be a cure and as far as I can see no one (apart from the family) has ever said it will be.

Just caught up this morning and will add my reactions to the discussion.
About the hospice. I don't know but think it unlikely that any hospice would be happy to take Charlie because of the possibility of disruption to other patients. Other patients are being disturbed by 'supporters' at GOSH and their seemingly irrational behaviour must mean that this is a possibility.
Dr H's new treatment. I read somewhere, but it was some time ago and can't remember where, that the treatment being proposed is different to that which it was previously decided would have no beneficial effect. I think another nucleoside had been added and showed promising results in lab tests.

Maryz Yep! Have had that reaction too and completely understand it. But I guess that just highlights my point that everyone deals with it differently and to tell one person how to the should or shouldn't be feeling just makes the situation worse.
Sorry to have disturbed your equilibrium on a Saturday morning
And by the way don't let it put you off Amsterdam, it's great!

There are multiple excellent responses written by parents to 'Welcome to Holland' which give the 'Holland can just fuck off' pov very well - 'Amsterdam International' and 'Welcome to Beirut' are two well known ones. MN version would probably be HCFOTTFSOF (ATFOSM)

Misshavisham will certainly look those up!