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

NHS info here...

Brain death/Vegetative state

There's a difference between brain death and a vegetative state, which can occur after extensive brain damage.
Someone in a vegetative state can show signs of wakefulness – for example, they may open their eyes, but not respond to their surroundings.
In rare cases, a person may demonstrate some sense of response that can be detected using a brain scan, but not be able to interact with their surroundings.
However, the important difference between brain death and a vegetative state is that someone in a vegetative state still has a functioning brain stem, which means that:
some form of consciousness may exist
breathing unaided is usually possible
there's a slim chance of recovery, because the brain stem's core functions may be unaffected
A person who is brain dead has no chance of recovery, because their body is unable to survive without artificial support.

and

A vegetative state is when a person is awake but is showing no signs of awareness.
A person in a vegetative state may open their eyes, wake up and fall asleep at regular intervals and have basic reflexes, such as blinking when they're startled by a loud noise, or withdrawing their hand when it's squeezed hard. They're also able to regulate their heartbeat and breathing without assistance.
However, a person in a vegetative state doesn't show any meaningful responses, such as following an object with their eyes or responding to voices. They also show no signs of experiencing emotions.
If a person is in a vegetative state for a long time, it may be considered to be:
a continuing vegetative state – when it's been longer than four weeks
a permanent vegetative state – when it's been more than six months if caused by a non-traumatic brain injury, or more than 12 months if caused by a traumatic brain injury
If a person is diagnosed as being in a permanent vegetative state, recovery is extremely unlikely but not impossible.

Nellie, can't put flowers or imogees on as phone has gone weird but instead I give you hugs my thoughts and prayers for being so brave in sharing your situation which has made me cry. Thank you and I wish only the best for you in the future xxxxxxxxxxxx

And while all this goes on around him the latest photos show poor Charlie looking even more bloated.

Ofcourse CA will interpret that as their chunky monkey continuing to thrive!!

I have followed all 12 threads with great interest, well actually am still at the beginning of 11 but can't keep up so slightly jumping forward!

I have nc for this but have utmost support for GOSH having had twins there a few years ago and cannot bear the terrible way that the staff have been vilified over this case.

How are you all discussing this in RL or are you not given that we can chat here? I just got into quite a heated discussion with a friend over it and have come away feeling quite upset. She is a really intelligent and lovely person and yet is so convinced that Charlie should be 'given a chance'. I stayed cool but so so hard.

I've discussed it in real life with a few family and friends. All feel sorry for the Gards but all think that he should be let go of for his own good.

I have family who work within the NHS who are upset at the treatment of GOSH and who are pointing out the resources that are being spent on keeping him artificially alive when it is not in his best interests to do so.

I've discussed it with colleagues (all medical). It's unanimous amongst us, Charlie is not a guinea pig and he should be allowed to pass.

My parents agree. My mum's a Daily Mail faithful and she says he's gone from the look of his eyes. My dad's a retired funeral director who reckons the whole saga symbolises how afraid our society is of death, since people would rather keep a baby 'alive' than let him go peacefully. I'm inclined to agree with him.

This friend I was discussing with got so impassioned, I couldn't really reason with her and ask her direct questions as to what did she think of his quality of life after he was 'saved' so didn't push it. I have a lot of family working for the NHS which makes it harder I think as I know what a brilliant job they all do.

It is such an emotive topic isn't it.

I've followed this case from the beginning. And have a child living with mitochondrial disease, a different genetic mutation to CG.

The recent photos show a very swollen child to me. Does this mean his organs are failing? Specifically the liver? He is not looking good at all now. I pray for the day this horrendous situation comes to an end.

I missed that out of my posts. Even if he was off vent and concious again, whatever is causing his oedema will also need addressing - and some of the things that could be (i.e. Kidney damage) are irreversible too.

Hi all, given that these threads are moving so fast and we have new folks joining in (as well as others who've been here all the while), I thought I would mention that some of us have sent messages of support to GOSH through their Facebook page. We know that these are read to staff and are hugely appreciated by them.

GavelRavel brainstem death is legally dead. It's assessed though a lot of things including the most primitive reflexes.

Charlie's most primitive reflexes are probably in tact. I'm talking things like his eye muscles spasming when ice water is put into his ear, rather than kicking a leg. His respiratory centre is in tact as far as has been reported, his issue is that he can't move his chest wall to draw in and force out air.

Heart, kidney, liver failure, could be any of those

Samesorrystory, luckily none of my RL friends mentioned it. Unfortunately I had a full on row with DH over it as he said that "parents wishes should trump any medical opinion". I tired to reason with him but he was adamant. I was shocked. He's normally quite level headed about things and doesn't often comment. However occasionally he states an opinion that totally opposes my own and won't debate it. I felt a bit upset it, but we just don't talk about it now - and I come here.

You are 100% spot on re the Congressman's intent with that tweet, Online. His only interest is the support donations it may garner for him with his ultra-right wing constituents. And I'm sure he's hoping against hope that the bill is so delayed (or doesn't pass at all) that it becomes moot because the results of the upcoming hearing is that the treatment is not worthwhile, or that poor Charlie passes away naturally before any real steps for Perm Res can be taken. Very callous IMO to make such a grandstanding gesture knowing that it's highly likely to mean nothing in the end. How inhuman to raise Charlie's family's hopes like this.

By the by, does anyone know if the Gards have actually submitted paperwork to US authorities requesting visas for medical treatment or for permission to emigrate? How on earth would they even get Charlie a passport?

Has anyone seen this?

www.google.co.uk/amp/www.dailyrecord.co.uk/news/uk-world-news/parents-terminally-ill-baby-charlie-10829974.amp

This seems to be what the emergency hearing was about with the Judge.

With the usual disclaimer about feeling very sad for the parents, I don't understand why they think they can override medical experts on something like the length of tests? Surely that is a clinical decision?

Trampire that was my friend's line entirely! That the parents' decision should always be above the courts or the doctors who think that they are god.... I can't see now anyone could argue that the parent always knows best, they so don't. So sorry that you had the argument with your DH though that is really hard.

That's why these threads are so good, it can be discussed anonymously and without fear of upsetting friends and family.

At my dads workplace he claims all but one are behind the Parents and that everyone else was fuming at one guy who said the ventilator should be switched off.

1112aa I read a few threads back about your Dad and his workplace, it would seem that opinion is very polarised.

I bought one of the Peter Pan mugs and a couple of other bits plus a small donation to GOSH. Tiny things that make you feel a bit better.

Natasha I think the majority of us in the US understand that a person in the UK is taxed at a much heavier rate than a US citizen of the same earnings would be. But you are right, I think, in saying that many of us don't correlate that with funding the NHS. I do however, and would be willing to pay that $6000.00 a year I pay in health insurance premiums (plus the amount I pay yearly in co-pays) in taxes if it would fund NHS-style healthcare here. My only experience with 'socialized medicine' style care was as a military wife back in the '70s. It was all free, was very well organized, and we received excellent care.

But these are the same people who don't understand that the US taxes they pay goes to fix our roads and build our bridges. They only know they don't feel they should have to pay taxes or that they should be able to pick and choose what their tax money goes for.

All my friends bar one think Charlie should be allowed to die and be at peace

Opinon is. Perhaps by Gender and class. My dad's workplace is mostly Male, only the female supervisor who is often at head office. Plus working class.

I have only discussed it in real life with my DH. I'm not sure exactly what he thinks, but seems to be more on the side of Charlie being able to die.

Wonder what the directions meeting on Friday will be about?