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

OK Beyond, I will de-lurk! Has anyone ever read about the case of Jahi McMath? I apologise wholeheartedly for a Fail link but it's really rather chilling.

www.dailymail.co.uk/news/article-3498773/As-healthy-beautiful-proving-naysayers-wrong-Mother-Jahi-McMath-declared-brain-dead-doctors-two-years-ago-shares-new-photo-warrior.html

Ok also delurking. Just wanted to say that these threads really have been an invaluable way to obtain information about this case. It has been covered quite badly by the media and it's been really useful to listen to the viewpoints of others. I very much hope they don't get zapped but I'd also appreciate a shout if a fb group is set up

AcrossthePond55.

I echo that.

But it is outside of our control really.

Id have to set up a fake facebook account to join because I dont want people on here to know my name.

Spiteful- what is chilling about that link?
The girl has been declared brain dead.
Her mother posting photos of her in cute red sunglasses doesn't change the fact that she is brain dead.
Am I missing something?

Well, tbh if there is such angst about the potential shutting down of these threads, I think people should get a life and move on.

Otherwise it seems to me that the frenzy from "some" is equivalent to CA. Without the the horrible direction of anger towards GOSH etc. of course.

Step away from the mayhem for a minute maybe. It is so easy to get caught up in it all.

But up to now and hopefully going forward, posts here have been very measured and compassionate with a lot of very informative information.

Thanks to you for that.

Well, that poor girl has been brain dead since late 2013, Windows. She's been kept artificially alive for around 3.5 years and has that look of peacefulness that you only see on someone who has died. I found that pretty chilling, as well as the fact that her mother is still so full of hope, yet it can only end in heartbreak.

It's complex. I don't think Charlie's parents have been doing the right thing. And some of their supporters have behaved deplorably. But, ultimately, I absolutely believe that they love Charlie. I fear that they are stuck in denial, cheered on by the baying mob. But that only serves to reinforce them in their position.

I hope, and pray, that the judge rules that Charlie may finally know peace. But I fear that when it happens, his parents will be...not just devastated, as all parents losing a child are devastated, with the very centre of their universe ripped out, but also cut off from the support they need most at the time they need it most, as I cannot for a moment imagine the CA contingent providing what they will need.

I consider it appalling that the GOSH staff have been subject to death threats, and disgusting likewise that parents of other extremely sick children have had additional stress and worry. And yes, if Charlie's parents have been receiving threats, then that is also appalling and disgusting.

This is an emotive case. In the middle of it, there is a small child. A child who has been dying for months. Who is much loved, especially by his family. But also by others. I don't mean the strangers in CA, I mean the staff who have been looking after him for months.

I am glad that we live in a country where, ultimately, even the most disabled and voiceless child has rights of their own. Because whilst that may seem cruel to some, ultimately it is a protection. Because even the most loving parents can sometimes put their desperate desire to keep their child ahead of the cost to the child of prolonging their dying.

As the GOS motto says "The child first and always"

The Jahi McMath link is so sad. I didn't know of her case.

I know Charlie hasn't yet been declare brainstem dead, unless the most recent scans show otherwise. But apart from that his day to day experience seems pretty identical to hers.

It would break my heart forever to have to let one of my kids go. But if that was their day to day reality, with no hope of recovery, I'd have to.

I am not entirely sure that every single critical post should be removed without some evaluation. I don't agree with Shwang but it is important to understand how a poster got to this position because it says a lot about the use of social media that is not acceptable to some people. Especially when it gets out of control and produces a backlash as we see in this post. There is certainly room for debate about how such a feeling was arrived at and the validity of it.

The child first and always As it should be.

I have every faith that Mr Justice Francis will put Charlie first when he makes his ruling.

The Jahi case is so so sad poor girl and her family

Well...very glad that GOSH have finally said ''Enough is enough''! with the ongoing nasty threats and harrassment.
After the murder of Jo Cox, one has to be careful, so many whack jobs about looking for any bandwagon to leap on.

The Jahi case was very distressing. And she and her family are in complete limbo now, as they reside in the only state they can that allows people who have been declared legally dead to be kept "supported" by machines. They are very far from home.

I'm up for FB if it ends up happening. I hope Monday and Tuesday brings a conclusion to the case, but I have hoped that for so long I'm not sure if it's realistic. There has been a real uproar on twitter and other social media - there is real revulsion about the threats towards GOSH. I'm glad that the majority still defend the intentions of medical staff. Some of the CA stuff is very disheartening.

There was a comment earlier in the thread by a poster that the family should be 'sacrosanct' on MN. I find that disturbing. But I understand the position MNHQ are in, and I respect their rules.
I won't say anything more as I don't want to upset anyone or contribute to a deletion of these very useful threads.

Could someone pm me about any facebook group please

Straight - jahi is not in limbo, she's dead. I've been reading a bit into it now and it's horrendous. The daily mail doesn't tell half the story (when does it ever?)

Maryz..yes, advice taken...I am a newcomer here, having lurked on the MN Charlie Gard 1, 2, 3,4, 5&c...and have had two comments pulled ..I didn't think they were unsupportive, but someone must have.. so I will be on best behaviour :)

I must say,,MN discussions on the tragic case are the best, most informative online anywhere.
The mix of people, all very fair and balanced, and the links very useful. Many thanks for making those easily available to all.

Latest update from CG on the CA Facebook page. It appears that the feature world woman who was then wasn't their spokeswoman, now is.

And judging from the way the post is written, reproachful but more in sorrow than in anger, is controlling all media interaction.

The Jahi case is awful. The doctor on that one reported at the time that her bowel was rotting inside of her and being sloughed off.

Also, the parents want her both legally alive (so they can keep her on machines) and dead (so they can pursue a wrongful death malpractice case).

Wasn't the Featureworld woman more than a little aggrieved that she had been pushed aside in favour of the pastor, UKIP-man?

It looks like she has been happy to step back up in a time of crisis. It doesn't hurt her public image, I suppose, to be once more associated with such a high profile case.

I remember the McMath case very well. I was living about an hour away from where it took place and local media followed it closely.

It was similar to Charlie in that you had family who simply refused to accept the truth of the medical facts, but in this case they believe that Jahi is still 'in there' and that God is going to work a miracle and that one day she will simply wake up. The fact that they've been able to keep this belief going for 4 years now is testament to how strong a conviction can be in the face of reality. It's a cautionary tale when you look at the Gard case (although the facts are dissimilar). That at some point the needs of the child must be put first no matter what pain it causes those left behind.