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?

I very much doubt the poster Elvira can enlighten us given that this information, if it exists, will be full of medical jargon. But if she is a medical expert, then yes, let's hear her pearls of wisdom.

would you not want to spend every second with your dying child? as opposed to protesting? what do they think they are going to acheive? its bloody cruel what they are doing,

No I didn't imply the hospital had done anything wrong. I said hospitals' actions shouldn't be above scrutiny or criticism which is what some GOSH supporters seem to think.

There appears to be a polarising of opinion on this. On one side is CA who seem to be a bit of an irrational bandwagon driven mob who are determined that the hospital are wrong.

On the other side (and especially this thread) there appears to be a blinkered opinion that GOSH can do no wrong and the parents are horrible selfish cruel people who are only thinking of themselves and are 'enjoying' this.

I think the truth probably lies somewhere in the middle with parents who are (understandably) not thinking rationally or clearly but honestly believe they are doing the best think for Charlie. I have no doubt GOSH think they are doing the right thing for Charlie too, but there appear to have been issues surrounding their handling of Charlie's care (particularly with not acting decisively much earlier regarding nucleoside therapy) and the sensitivity with which the family have been dealt with which have led to a situation where the family are so mistrustful of GOSH and aren't inclined to believe them that the best thing is to let Charlie go.

And much as some posters on here might insist they are being 'balanced' and 'measured' it's very clear some posters are relishing the opportunity to have a pop at a family who are clearly suffering.

It's like a group of old ladies clacking their knitting needles around a guillotine.

This is a case of medical ETHICS not treatment or cure.

I've had to consent to the withdrawal of life sustaining treatment for my child and it was the most horrific thing I've ever done and I grappled with guilt and worried I should have forced it to go to court, and all that stuff, for years. But ultimately every hour, every day, more were by then seizures, pain, lines in, interventions that were futile, surgery that would not have had a good outcome by its end. Prolonging the inevitable to delay my own grief wouldn't have been the right thing to do.

Those recent pictures of that parents posing in front of their dying child are just chilling. How can they not see how gravely ill he is?

It's like a group of old ladies clacking their knitting needles around a guillotine.

Untrue and unfair. The majority of posters on this thread are rightly horrified by the baby's situation. That is the focus - not what the parents are doing or not doing.

Very sorry to hear your story leghoul.

Today 12:19 Peepeep

Those recent pictures of that parents posing in front of their dying child are just chilling. sad How can they not see how gravely ill he is?

The posing - even with sunglasses on head - is very unwise and quite unbelievable.

The Sunday Times article is excellent. Very balanced. It also makes the interesting point that maybe his parents have fought too hard, thanks to a culture in which sometimes emotion trumps reason and social media is too powerful. What happens when this poor little boy inevitably dies? Will CA still be supporting them? They are already posting more about Alfie and Bradley than they were a few days ago.

Interesting that there are posts supporting GOSH on the Army page..seems some have got fed up with the slating of it

I have been reading the details of the potential new treatment available and now understand that it changes the case - whereas before there was NO possibility of improvement now there is potential for it. It is possible. I wonder how many of you have read about the new treatment, what it is, who it is being used for and why it's only available now - much more interesting than the daily dose of outrage to be had from the GOSH Facebook page

I wonder if you have read the intelligent and informed research of the 'treatment' on the previous thread and also the considered posts by the biochemist who came on?

I suspect you haven't and are underestimating the neural abilities of the average mumsnetter.

Margaret, I asked you on the other thread what your specific criticism was of GOSH and you still haven't supplied it.

Lots of us are medical professionals and would be interested in your opinion on that.

The suggestions that this is GOSH's fault for somehow being insensitive to the parents would carry more weight if there was a sad trail of other parents saying the same thing, but AFAIK nothing quite like this has ever happened before

That doesn't mean that it can't have happened of course - only that it suggests there's a lot more going on here than the hospital's claimed attitude

"Their behaviour is baffling to say the least."

No I disagree. I can understand why the parents are doing what they are doing. Whether you would do the same, is a slightly different issue.

I think many of the posts here are judgemental and hurtful.

The guillotine analogy applies much more appropriately to CA. It is they who are having a lovely time spectating on this. When Charlie dies, they'll all drift away waiting for the next sensation.

The posing - even with sunglasses on head - is very unwise and quite unbelievable.

Agreed. The sunglasses on head made me think he was probably having a timeout in the hospital gardens just beforehand, but then got a call saying, "Come back inside, they need a photo of us together standing over Charlie for the Daily Express".

That's how it looked anyway.

Perfectly sensible to wear sunglasses in this weather and things walk in seconds in hospital so keeping them on you is a good idea.

Just lost a huge post. Was trying to translate a detailed article for you people as I cannot find one in English - plain English at that like a pp helpfully pointed out . Not sure why I was looking as most people on this thread have made their mind up and most posts are about pearl-clutching at the parents. So the mum is wearing sunglasses. How dare she I agree with everything Margaret has said.

Personally I have no opinion on this case from the ethical pow. But if you ask the question - is there a possibility that a treatment could improve the condition of this patient? You cannot said there isn't. There is. There is a possibility for improvement. There is evidence that, at molecular level, this trearment crosses the brain-blood barrier and reaches the cerebrospinal fluid. It might be unethical, too expensive, inappropriate, risky - but those are different questions.

Someone mentioned cashing in. I think the religious groups who are setting up just giving pages to get to them are. Surely if they could pray it would work from there.

The supporters I think genuinely believe what they are doing is right. And I don't know how you deal with that. The majority of them seem the type of people who are very mistrust ing of authority. So if they saw a police person slip on ice they'd laugh cos their Uncle Billy got arrested once and he was innocent in their eyes so they feel all police are scum. Maybe they have had social work involved and not felt it's gone their way. They aren't able to understand the court judgement or perhaps haven't been able to read it or want to read it. If you only listened to everything out of Connie's mouth without the ability to use critical analysis on the statements then it would be a horrific situation to be hearing about. Where an innocent baby is being kept prisoner against treatment that could cure him and make him "a normal boy".

A lot of these people are women. If you look at the fb pages they are mainly sahm with often no job/qualifications. That's no criticism of sahm it's the fact that these people seem to have very little else going on and so have been swept up in this. They genuinely believe they are going to save a baby. It's filling an emptiness for them and giving them a purpose. You see most of the protesters have brought kids along with them dressed up in blue holding signs.

You'd need someone on the inside of their group to try to explain the other side a bit. Because it seems they have such a mistrust of "experts" they can't hear the facts.

Where's this evidence been published, Elvira?

I agree with Oblomov and do not know what I'd do if faced with such an awful traumatic situation

@OhtoblazeswithElvira

Can you post the link to the article anyway? I'm sure some people on here will be able to read it. Thanks

Elvira, the issue is in part whether this treatment can conceivably benefit Charlie. He has severe and irreversible brain damage, he can't see, hear or move, he can't breathe or deal with his secretions himself, and he is clearly now going into organ failure. Do you contend any of that will be reversed, and if so to what extent?

The Charlies Angel's group has some slight discussion and is less heavy on the delete. I saw a question about why there was more money needed. And another question I can't remember but I did think there's no way that would be allowed on charlies Army page.

CA wanted to send a card to all kids in the hosp from them.

The parents will be sent out at times. That's common in ICU reasons might be...if they are doing an invasive procedure eg fitting a central line they want space and peace to do that plus it's distressing for the parents. I'm not sure if he gets physio but they might well ask parents to leave for that.

Also if a child dies in the unit. Then they might ask other parents to either leave or if their own child only had a few hours left then could stay but they want privacy for the grieving family and while they move the child after they have passed. Similarly they would ask all to leave if someone on the ward was having surgery. They can preform surgery on icu nor in a theatre especially as these patients can be tricky to move. So will close the ward to visitors while they do surgery for privacy/peace so can concentrate/infection reasons.

So when they want to troop random Americans in total the icu there's many many reasons they'd be told no. Aside form the fact it's only usually immediate family anyway.

Elvira with respect, have you read the court judgements in Charlie's case? This is the same treatment that was being discussed there. It wasn't ruled out in his case because of the blood/brain barrier issue (although that was mentioned), but because it can't reverse his brain damage. There is zero prospect of improvement of his brain damage due to this treatment. It can (maybe) address the mitochondrial defect itself, but not the damage that defect has already caused.

There was an excellent post on the other thread by a poster called unweavedrainbow

I think it's worth sharing here for those who may not have seen it.

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I hope you don't mind me, I've been lurking on this Charlie Gard thread and others. I have a background in bioethics.
In terms of the letter, as far as I can gather, the type of mitochondrial depletion syndrome that Charlie has causes him to have a genetic mutation that means that he can't easily synthesise a chemical that the body uses to replace mitochondria as they die. This means that he doesn't have enough mitochondria to power his body. The treatment's aim was to give him this chemical so that he could make more mitochondria-and therefore get, at least a bit, better. The thing with the treatment is that there were some issues that hadn't been properly explored, such as whether or not the treatment could cross the blood-brain barrier. Thus the treatment would be experimental. These researchers are arguing that they have data that shows that the treatment molecules can in fact cross the BBB. They argue that this means that Charlie should be treated. It's not unethical, per se, if it means that he could recover some quality of life. Experimental treatment does regularly take place-especially if the patient/subject has very little left to lose. The key consideration though is that there does have to be a realistic possibility of increasing quality of life. With Charlie there really isn't and so arguably it would be unethical.
The letter simply doesn't take into account how sick Charlie really is-and I suspect that they're not actually aware of how sick he is. Even if the treatment works it can't repair the damage already done. Therefore it shouldn't really make much difference to GOSH's case.
I hope you don't mind me butting in.