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

Apparently all he needs is his vitamins b6 and b12 and some acupuncture. On CA a few minutes ago

The morphin will be affecting the result, the kiddo needs to be on b6 & b12 vitamins to boost his cells. If Charlie isn't getting his b vitamins then Chris and Connie can ask for this..are the parents allowed to give Charlie acupuncture through a qualified practitioner as there are benefits to cells and blood circulation and it is relaxation..

There are so many children who have been or are also now at this point, in some ways between life and death. Not all of these children get the huge publicity and media sensation that CG has. There is something so wrong about this case being twisted for a media pro-life, anti NHS agenda. There is a little boy who needs to be allowed dignity and peace to end his suffering. Am hoping the parents will gather all the strength they need to let their beautiful boy go peacefully. Also much respect and appreciation for all the GOSH staff who have been working to support and care for CG these last? 10 months and who must be subject to awful pressure and in some cases outright abuse that is in no way deserved considering the job they do.

I work with many children with complex and life limiting disabilities is inluding severe physical and learning disability and degenerative conditions . I love my job and the children I work with, who enjoy life . I know a child who has a severe mitochondrial disorder who has no movement in their entire body. They cannot swallow or blink or move their eyes. They cannot breathe and are attached to a ventilator. 24/7 and have been for most of their life. They do not respond or cannot make a noise and tears run from their eyes and down their face. . I find it very upsetting seeing this child, this is highly unusual.
I am not convinced that this child has any quality of life and is suffering in pain.

Oh yes with music too wedonotsow can have already looked into whether they need a music licence. Can you imagine that loud cheering and shouting accompanied by music just as the judge announces verdict upheld! Wow! What great support for the poor parents.

So will there will be a police presence at the court? Because I reckon those pro lifers/CA etc will be out in force

On past experience, they talk a good fight but not many of them can be bothered to turn up.

Fluffymonkey that is so incredibly sad

I started with lots of empathy for CG's family but it's soon waning. The poor poor baby- his name & image are used to sell merchandise , for religious & political propaganda , while everyone seems to have forgotten he's still here, he's still terminally ill on life support with no real prospect for any minutely clinically signifciant improvement & probably in pain- his life dragged on in this state for almost 6 more months now..... As a parent when your child is so vulnerable, wouldnt your natural instinct be to protect him from all this?
Now the family statement is implying there is brain damage (saying he did not have brain damage in April) - until 2 days ago they were saying he is SO stable he responds to us, he looks at toys , GOSH are liars etc. Even after that they want to continue to fight- for whom? Sounds like poor Charlie has given up fighting long time ago.
I am wondering if C&C have been always like this with GOSH- or atleast they were told due to his seizures & encephalopathy in January they no longer thought experimental nucleoside therapy was in his best interest- if they have been like this- twisting everything GOSH says, calling them liars/evil etc, walking out on meetings I sympathise with the clincians looking after Charlie who have had to work with them somehow for last 6 months- I don't think we will ever hear GOSH's side of the story- but I am sure there is a lot more to it than disagreement over parental rights.
Vatican & Trump have lot to answer for- dragging on the agony of this helpless child
For another month or so, especially when his family had already said their goodbyes.

fluffymonkey, just heartbreaking

Dh has a former of schizophrenia. Ds has an increased chance of developing it (500% more likely than average - i.e. 5% compared to 1%). I am so scared of him developing it. It makes me feel so guilty to have had him at all.

Hopefully that's the case ceto
I just can't believe the bs theyre coming out with.
Looked at the #gosh on twitter, it looked like 90% were anti GOSH.
I really can't see this being representative of the population, surely just a case of vocal minority?

I really feel for the poor staff. If the Gards do pursue litigation against the hospital, the staff will be under even more pressure as everything everybody has done/not done will be under scrutiny. This will be so stressful, I can envisage some of them just packing in. They're not robots and they do care about their patients. It's a real kick in the stomach for medical and nursing staff to be treated this way. It's corrosive to the soul to have to do such a difficult job under those conditions.

It definitely will affect patient care if the staff are stressed, anxious and possibly depressed in their daily work. Many people, including patients and their families will suffer due to all this and for what?

I really hope this doesn't have a knock on effect and prompts other people to start hate campaigns and court cases against the NHS for being unable to save terminally ill people.

We're living in an idiocracy.

I agree that twitter seems very anti gosh, so too are the comments on the telegraph article tonight on FB (or they were the last time I checked).

Yes, umpteen. I've seen a CA post where a woman said that there are neucleotides in breast milk so maybe that's what Charlie needs to have to make him better.

Nite all peace to you all.

I have just seen a CA comment saying C&C should ask GOSH to give vitamin B 6 &
12 & acupuncture
Apparently it helps with circulation!
This by the way was in response to the post which said Charlie didn't have Brain damage in April- Seriously do they know anything about what's wrong with Charlie?

Sorry to go off topic slightly, but what is the significance of the toy (monkey?) that the father has in his pocket?

Something wonderful for charlie and all of you, a beautiful piece of music

Ralph Vaughan williams ....variations on a theme by Thomas tallis.

Nite Sos

I think that Charlie has a toy monkey too and so his dad likes to have one with him.

Vaughan Williams' music is beautiful.

I had thought Dad likes to carry 'Charlie's
Favourite toy' (the monkey) with him when he goes to court hearings-
Didn't realise there were more than 1 monkey's....

Someone said there were two monkeys eddie. One to stay with Charlie and one to take with them.
I think Kate McCann started it with Cuddle cat and Shannon Matthews' mother carried one of her soft toys.