Charlie Gard 10

[user1498911470]

Hi guys new thread.

Let's try to keep this one as sensible and measured as the past 7 threads have been.

Please note the MNHQ comment on thread number 7.

"Hi everyone,

..... We had to remove several parent-blaming posts, so we'd like to ask folk not to do this. We think we can all agree that this is a truly awful time for all involved and we just wouldn't wish it on anyone. If there's anything we could do with more of, it's support. We'll continue to remove reported posts that break TGs (if we've missed something, do feel free to let us know).

If we have to make too many deletions, we will need to look at removing the thread; which is the last thing we wish to do.

Thanks all"

Starting now as 9 will fill up quickly.

And I don't believe there is a hospital in the US that will take a child like Charlie without being paid. Unlike GOSH, who have been treating him without taking his parents' financial situation into account

A relative of mine had pro bono treatment abroad
This meant that they "only" had to pay for their hospital bed and nursing fees, all doctors/surgical fees were waved.
The bill came to thousands per day even though the doctors didn't charge a penny

It's a clinical meeting about a patient so by default it's confidential.

The judge has ordered this meeting because he has to be able to, well, judge the situation, and there was such a lack of clarity before that he needs the clinicians involve to be able to properly discuss it so he can actually get the best idea possible of the medicine. I don't think, clever though he undoubtedly is, that it's any sort of tactic, unless you would count getting Dr Hirano a completely clear understanding of Charlie's condition that. Maybe you can, I don't know. He did say he couldn't rely on the medical views on anyone who hadn't actually seen the patient.

The Mail names Doug Turnbull. He is The Clinician in U.K. metabolic medicine but unlikely to be the expert witness in the first hearing. First, because I think even the Mail would hesitate to trample on a court order in such a high profile case, and second because Turnbull isn't a paediatric specialist, which the Newcastle witness was. I imagine the names of all the embargoed clinicians can be found with a quick google but I hope the poor man isn't subjected to unwanted attention after this. He got enough crap over the 'three parent babies' nonsense I expect.

t's a clinical meeting about a patient so by default it's confidential.

Surely it's only the medical professionals who are legally bound by that though? (Unless the judge puts more in place)

I can go to any meeting or appointment about ds and come out and tell anyone I want what happens. The doctors are bound by confidentiality and can only tell people with my permission.

Tinsel, is your relative a UK citizen? Was there a reciprocal arrangement? In which case, none of it was free, it was paid for by the NHS.

Something I don't understand.

If CG is to be given this treatment then the US Doctor needs to apply for a compassionate use exemption as the drug has not been cleared by the FDA.

The US Doctor has not done this. Questions:

1. How long would it take to get approval
2. Would it be required if the UK court agreed its use and he were treated in the UK?
3. Would that also hold true if treated in the US?

Anyone with any insight? Tx

Death is not the worst case scenario

No, it really isn't. And I think the parents and Charlie's Army's collective sense of "what is right" for the patient, is purely based on the fact that Charlie is a baby. Nothing else.

For example, if it were not Charlie but Chris Gard in hospital on Life Support, unable to move, breathe, swallow or cry, blind and deaf, with extensive brain damage, and existing in pain, would Connie Yates still be fighting so tirelessly for Chris's right to live like that?
Would the family be campaigning and appealing for experimental treatment to be performed, so that he could be stable enough to return home in the same catastrophically degenerated state?

Would the family think it in Chris's best interests to spend his life like that, and would Connie feel able to take on the mammoth task of caring for a 100% dependent, profoundly disabled Husband 24 hours a day?

I just cannot imagine that the mindset would be "If he's fighting, we're fighting!" in that case.
Including from the majority of Charlie's Army.
But because Charlie is a beautiful baby, people feel more emotionally affected by his plight. Nothing feels more cruel and devastating in life, than the death of a baby.
CA have descended into hysteria because they are buying into the 'we can save a baby's life' idea, without even considering if the quality of that life would be worth enduring.

If this exact situation were an adult man, I don't think the crowd would be quite so eager, to either admonish Doctors, support his Wife's actions in forcing his body to remain alive, or to buy Air Fresheners and phone cases with his stricken body on them, to fund the treatment to keep him existing that way.

If Charlie dies on a plane it would be sad, but off life support he is going to die anyway. They have raised the money to go to America and I think that they should be allowed to go.

The judge has explicitly said that Charlie is not to leave GOSH so for goodness sake leave it alone.

If Charlie dies on a plane it would be sad, but off life support he is going to die anyway.

There are different ways to die

Being pulled about, feeling nausious from movements you don't understand and have never felt before, then dying strapped to a transport trolly, having your ribs broken because you're still for treatment, and then dying anyway……
……is a million worlds away from dying comfortably in a controlled way in the environment you're comfortable with as it has been your "home" for months, gently managed and pain relieved. Able to be cuddled gently and rocked to sleep for the last time

You're basically saying "since he's going do die anway it doesn't matter if it's traumatic and awful instead of comfortable"

I've read that book, Bruffin (Elizabeth Glaser) and it returns to haunt me at times. So sad.

I have tried not to get too invested in CA but "Yay a proper doctor at last!' which some enlightened spirit posted on their Welcome Hirano! topic has enraged me.

@likeafish i always wondered that

where do they draw the line-6 months a year?

by then they'll never let him go

Yes, Sirzy. I was responding to a post quite a while back about whether the judge had ordered it to be confidential.

If, as I think I read on here, someone representing the Garda (not sure who) referred to some information as 'it'll be in the transcript' then I think it looks like information from the meeting will be made public by Charlie's parents. The official transcript is for the judge so I don't think that can be published without his agreement. So the potential outcome is that there is a one-sided version of events until the next hearing, when presumably the judge will draw on the transcript (and the legal teams?) and the full story will be apparent.

Well said LogicalPsycho.

Gards, obviously. Not Garda.

Tinsel, is your relative a UK citizen? Was there a reciprocal arrangement? In which case, none of it was free, it was paid for by the NHS.

No, it was in their own country
Their doctors treated them for free
They were still charged thousands per day for hospital bed/nursing/other hospital fees even though the doctors didn't charge anything due to circumstances I'm not going into

Point is, the money would go, even if they find doctors who will treat Charlie for free and if they get the medication for free. Re-patriation, bed fees etc will probably still apply.

Logical you are quite right.

thats what im worrid about stify

shes not bound by anything and i surprised that JF didnt state that

I haven't posted on one of these threads for a long time by the way. I find myself so worried for Charlie's parents caught in this tornado of politics and social media at such a hugely vulnerable time. But have very little to contribute in commenting on it all.

But to all those posting on here who have talked about losing their own children, or working closely with sick and dying children. And of course to LonelyMummy and her Ballerina.

I think I said wh

I think I said when I posted before that working with children with mitochondrial disease as a doctor or nurse specialist must take such an enormous amount of strength because outcomes are still so poor. So many diagnoses that will only result in one thing.

The pastor mentioned his sister in law's funeral on his FB page, Miranda but the pastor and the lawyer could be related to the same person, for all I know.

I hope the judge has taken her aside and told her nicely that he expects her to keep it under wraps, and for her family and 'friends' to do so too. Especially that twat from UKIP. If anything proved that their usefulness is over, his behaviour does.

Just hope there is no furthur backlash if there is nothing he can do. Not that would affect him but bound to be some words said about him and GOSH and how should've done things sooner blah. Seen angry faces on the GOSH fund raising pages what's the point?!

Perhaps I should have said tragic rather than sad, as I think the whole situation is tragic. Charlie's parents are trying to do their best for him, and however he might die would be tragic for him. However, I don't think using the condition of a seriously ill child to make points about politics, the UK versus US healthcare systems, or the NHS is dignified or in the interests of Charlie.

Why is Laura Gard still allowing posters to abuse the Drs currently treating Charlie?

This is a reply to her latest post, she is also admin but is left up. Lots like it.

*Its amazing how one doctor can travel miles to help a little bundle he doesnt know yet our doctors carnt be bothered. Hoping all goes well

rabbitnothare, that is just taking the piss.

How ridiculous rabbit. Poor little boy would have died long ago if our doctors 'couldn't be bothered'.