Charlie Gard Case 4

[LovelyBath77]

A new thread to follow on from the others about this case

Has no 3 run out already?

With regards to what Piers Morgan said this morning it seemed to me that like many now Charlie himself has been forgotten and it's no longer about what is best for him but what is deemed "best" for his parents. They seem to forget that a terminally ill child who is probably in pain is stuck in the middle of this circus.

Exactly.

I think we could equally be accused of being "keyboard warriors" but there have been some great suggestions of useful activities:

Post supportive comments on GOSH Facebook page
Contribute rational comments on CA Facebook page
Report incitement to murder comments to @metpolice
Report potential fraud around false petition signatures - not sure to whom?
Donate to GOSH patients' fundraising activities

Any others?

Sirzy, I completely agree, which is the sad thing about this all.

Wrt needing medical staff to assist in moving him on a flight, is there anyone with the expertise and experience who would even contemplate it? They would put the medical inadvisability first, then possibly the risk to them personally of being in the position where something goes wrong as they would be blamed by the likes of CA.

ArgyMargy, because a lot of us want whats right for charlie,I do not see whats wrong with that,also why should Gosh be villified? they have done nothing wrong.

Don't forget though, in the whole "who loses" arguement for Charlie having the treatment, that this is experimental. There's a chance that the treatment itself could kill him or have horrible side effects.

i am confused. I looked at GOSH on FB and it seems the GOSH want to take Charlie to America but the high courts are refusing.
Did I misunderstand?

Two international hospitals and their researchers have communicated to us as late as the last 24 hours that they have fresh evidence about their proposed experimental treatment.

And we believe, in common with Charlie’s parents, it is right to explore this evidence.

Great Ormond Street Hospital is bound by the ruling of the High Court which expressly forbids us from transferring Charlie for nucleoside therapy anywhere.

That's not new is it? I think it was posted last thursday

There has been an awful lot of contention in the scientific world lately about the fact that, a lot of research has been published in all sorts of things that has not been verified by other researchers to be true. When you research something it has to pass a peer group thorough examination which involves reconstructing the research. It is only validated if several researchers come up with same findings. If it does its published. Thus new research is not published and nor is it been validated. It hasn't even gone through laboratory trials. The judge will see thus and throw it out, or least he should.

No GOSH don't want to transfer him to America. The parents say they have more evidence so despite the fact that GOSH still believe charlie has no chance they've referred it back to court to get this addressed. I think gosh said that about being forbidden to move him to address the claims that Charlie is being held hostage but it seems to have had little effect. I also think Charlies army are too stupid to realise that the fact that he's on morphine now means that he could have been put on it at any point since the last hearing. The way it was phrased appeared to be giving the judge any information that has changed since the last time he heard the case. CA think he's been put on it the last couple of days, perhaps they should ask the parents when he was put on morphine because they would have been privy to this information I expect But they've kept quiet about that.

muckpup73 the accusation of "keyboard warrior" is about just typing comments and not contributing anything constructive. By typing on a forum you are not "fighting". I think people have totally lost sight of what the word means. I was merely trying to encourage deeds as well as words.

Reading GOSH's explanation of his condition has taught me that we are not born with eyesight. I never knew that- I did know that babies can't focus well but not that. I am duly educated now.

www.gosh.nhs.uk/frequently-asked-questions-about-charlie-gard-court-case

Yes, here is the link for anyone new about it.

One thing I don't fully understand is that the parents went to court yesterday because they claimed there was new evidence. Why was that evidence not presented in court yesterday? The judge has given them a further two days to present such evidence; surely if anyone had evidence relating to their child's health and wellbeing they would have shared it immediately with the judge.

I havent been following this story, thanks for above link.
Crazy world where the GOSH have to release such information. God help their switchboard operators!
Such a high profile case, agree with words thrown about such as media Circus and frenzy.
But actually the story will be tomorrow's fish and chip wrappers at some point.

Considering GOSH said yesterday that they couldn't find another hospital in the U.K. who would agree to take Charlie and the huge, almighty mess surrounding him, I'd think they'd have no chance finding a team who'd agree to be responsible for him and his family on a flight.

Who loses if he goes to America? Well Charlie, obviously.

Just had a quick look at CA USA group- it was even worse than the UK one! Terrifying.

I dont even want to look on the ca usa page

When you research something it has to pass a peer group thorough examination which involves reconstructing the research. It is only validated if several researchers come up with same findings. If it does its published

That's not quite right in that studies of course get published after peer review but not when they've already been replicated. Once something is published it is then replicated and quite often other studies don't find the same results.

The whole scientific process is amazing but has flaws and at the moment there is a lot of debate and discussion about the quality of research being done and how much the source of funding affects results, about what gets published and what doesn't (which is a pretty important topic) and the quality and robustnesd of peer review. Ben Goldacre has been writing about this for some time as have a few others. So in many ways it's fair enough not to completely trust the scientific process, to keep asking questions and reading different research.

That said it's v clear cut in Charlie's case because it's such a severe illness and so many experts and judges have looked at his case. So this is more black and white than so many other situations.

I am finding this all so distressing. I want Charlie to be allowed to die. Looking at his parents yesterday on tv I am also wondering how the hell Charlie's mum is going to survive all this. I doubt she will ever accept the reality that nothing will help Charlie. She looks so underweight and exhausted. I hope that there will be professionals looking out for both parents.

I think the NICU staff (if any come across this thread) will find some comfort. I've worked in similar situations, staff will dread coming into work, no doubt being having sleepless nights, I would suspect some are off with stress which adds extra pressure to the unit and only senior staff will be allocated to look after Charlie.
I wish something could be done to stop the hate and threats to the GOSH team.
I am absolutely sure though that everyone there is doing all they can to care for him and I am full of admiration for this team.
Poor baby.

Update from yesterday here. Think it is starting again Wednesday/ Thursday. www.itv.com/news/london/2017-07-10/charlies-parents-told-to-spell-out-fresh-evidence-after-interrupting-court-hearing/

@MissHavishamsleftdaffodil the general chat on medics closed Facebook groups is that nobody would dare risk their indemnity or GMC registration on such a futile and unethical journey.