Charlie gard case thread 2

[Fancythat69]

The last thread is full, Not sure if another has been started.

Theres a CA rally at GOSH planned for tomorrow. What are these people on?

Thats the thing I'm no expert but I wouldn't look at the pictures and think awww he's got chubby

I've just had a sneaky look at the FB group. Seems there are lots of protests in various locations but not exactly a large turn out.

Did the parents join the protest outside GOSH?

NotAPuffin, I'm afraid there is absolutely no doubt in this case that Charlie has suffered catastrophic brain damage.

They are handing in some 'petition' today.... for what now?

Also, they want to send in a 'get well' card to all other parents and children currently having treatment at GOSH. Feels very passive aggressive to me..

Amazed that even though they don't agree with the whole Charlie situation and how been treated and whatever people are actually supporting the hospital on that page and not being shut down for it..

No photos from London yet. The three they have photos on, if you tskr out the children, there is literally a handful of people.

I admire those there though for putting their money where their mouth is, as they say.

Sluttybartfast

The thing is, we actually haven't seen very many pictures of Charlie - mostly the same ones, again and again, all with the copyright of the publicity people the family are using. Also most of the pictures haven't showed his whole body, just his head.

Re increased oedema due to ventilation after some time on it - if the pressures required for ventilation need to be increased, usually to maintain oxygenation, then oedema can increase.

*take

And yy Butterymuffin
While no one looking at that picture can say conclusively 'that indicates organ failure' (thanks for your informed take Bore) I can't think of any instance where a person swelling up and looking bloated is a sign of improving health. All I can think of are examples where something (else) is wrong.

I would be incandescent with rage if I were a parent with a child in GOSH and that bunch of maniacs tried to drag me into it with a card for my DC. How dare they.

The thing is, we actually haven't seen very many pictures of Charlie - mostly the same ones, again and again, all with the copyright of the publicity people the family are using.

True. It does look to me as if the two most recent photos, which are a day apart or so, show his head significantly more swollen in the second, but you are right that we don't really have enough of a 'timeline' to draw conclusions.

He does look extremely unwell though. And presumably even oedema caused by ventilation would have a negative impact on his body?

www.thesun.co.uk/news/3980184/charlie-gards-parents-speech-great-ormond-street-petition-treatment-us/

The thing that concerns me now is that I don't expect the High Court to reverse their previous rulings tomorrow based on my understanding of the new evidence.

Assuming that happens, what next?

If Charlie's parents remain resistant to withdrawing life support I cannot possibly see how you could ask any medical professional to do so. It's a hugely emotional and difficult thing to do, even when the parents support that decision.

I can't help feel there is going to end up with some sort of stalemate which can only be resolved by Charlie's ongoing medical deterioration.

The crass (even more so when you see the bits I've cropped off here!), but perhaps logical conclusion to the social media shitstorm that is Charlie Gard?

From this twitter thread: twitter.com/bbcbreaking/status/884043645304700928

I feel a strong empathy for Charlie's parents and, having been in a similar situation, I understand their fierce desire to prolong their son's life.
My own son was born in 2008 and soon diagnosed with a very rare muscular genetic condition. Like Charlie, he was ventilated and tube fed. Every time I see the pics of Charlie, I think of my beautiful son. However, unlike Charlie, his mental developement was normal and he was essentially a normal boy trapped in a failing body. At diagnosis, we were given the harsh facts; he had a 10% chance of surviving beyond the age of 2 and would we like to switch off the ventilator now? We did not and we fought for our son, for the 10% possibility. Perhaps predictably, we did not get a miracle and my beautiful boy had a heart attack a week before his 1st birthday. Looking back at the pictures now, I can almost see the sweat on his forehead as he struggling with the daily challenge of growing and breathing.
But I could not see it at the time. The doctors assured us that he had been starved of oxygen for so long before they resuscitated him that, even if he pulled though, he would be severely brain damaged on top of his many other disabilities. We had always agreed that this would be the line in the sand for us, and we sadly agreed to withdraw ventilation. I didn't want to let me son go, even though I knew it was the right thing, even now I am sat with tears in my eyes eight years on.
I still know it was the right thing to do but I know the terrible pain of the decision. My life has moved on, I have two wonderful daughters, one of whom I would not have if my son had survived. I could not have contemplated having another child if caring for my son, I would not have wanted another child, but I am grateful for the gift that I now have.

If Charlie was taken to the US and treated it seems that he would still need life support.
I have no experience of the costs of US medical care but doubt that after the costs of getting him there even £2 million would go very far.
The US doctor said he would give treatment if he was paid.
If Charlie was made a US citizen could he even return here for treatment.
I doubt any of these things will happen but they could potentially lead to an extremely difficult and distressing situation.

If the proposed treatment has any chance of working, I'm not sure it should be written off because of brain damage. Brain damage seems to be difficult to conclusively assess. If there's even a slim chance of improvement, shouldn't he be given that chance?

That is wonderful news about your son puffin. Truly. I expect we all wish that was a possibility on the table here.

Unfortunately, there exists no evidence that there is even a slim chance of improvement, not at present. The US doctor didn't think there was any realistic chance of a cure, and brain damage is not something we are yet able to fix. That makes this case different to that of your son. We all wait to hear about these doctors who've supposedly said there's a 10% chance, but that does contradict every single piece of expert evidence so far.

Also, even if it weren't, and there was a slim chance, it's also necessary to balance that against the presumably much larger chance of keeping someone alive, probably in pain, and with a horribly low quality of life. Charlie's own parents did say they didn't want to keep him alive in the condition he's in, and that was a few months back. He's unlikely to have improved in the interim. So yes there would at least be a balancing act to be done if there were a slim chance of improvement but, depending on how bad a state the person is in already and how slim the chance, no they shouldn't necessarily be 'given that chance'.

@sauvignonismydrug

Thank you for your post Sauvignon

I think I'm right in saying the hospital can't allow him to go to America, or anywhere else, without permission from the courts, and they are most unlikely to give it. And due to his complex medical needs, the parents can't just walk out of the hospital with him.

I wonder if there are any other cases of children on life support leaving a hospital and travelling somewhere by plane?

I assume in theory it could be possibly but all the machines would have to go and staff. And those staff wouldn't be NHS workers as it wouldn't be in their jobs to To that?

So they'd need private staff and to buy the equipment?!?

No idea, but those photos in that Sun article (about 10-15 people) are saying still for him to go to the US?

So say he was somehow made a American citizen cause that's so easy..gets treatment then what. Surley he'd still need to be in hospital except this time wouldn't there be bills to pay? What happens then?
Neve thought see Trump get described as being like Santa..or a lovely man

If america are so willing to give citizenship to save children's lives perhaps they could start with all the Syrian children living in a war zone or the thousands of children around the world in famine affected areas.

I find it very worrying that a relatively small amount of people can hold so much sway that they can influence the outcome of a proper judicial process.

I also agree that private fundraising needs looking into. I read that after Manchester there were issues with people having fundraised online but then not know how to get the money to the right people. They had done it out of goodness but didn't have the expertise to carry it forwards. After grenfell I donated only to the red cross as I felt they would be best placed to ensure the money was channelled well.

Not saying they influenced the judge but rather the fact that the court order was then not implemented.