Charlie Gard 8

[cjt110]

New thread so that we can await this afternoon's hearing at 1400 (UK time)

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"

Will she be quiet though? I doubt it.

thankyou online its a fair point an one that th US doctor might take into consideration when offering the treatment to see how things stan betwn Gosh and the parnts

i still dont know why they accuse Gosh of lieing theres nothing to lie about

phoenix
On an earlier thread when lots of us were trying to get CA posts pulled interestingly since the Gina Miller ruling its become a LOT easier somebody flicked through some of the profiles of the CA posters

many of them jump into one bandwagon after another
CG is just their current one
hence their lack of understanding / interest in the underlying issues

phoenix it seems to be much more about them and the kick they get out of being offensive to doctors, lawyers etc than about Charlie or his parents.

Cross post. Yes TP, that. Is it some kind of displacement activity from otherwise very tedious lives? Don't know, but they're bloody unpleasant. I hope a few of the more offensive posters are nicked following the judge's remarks. Hammer in the face is grotesque.

Well if she is not quiet then I assume the Chair will have her removed.

There will be a full transcript of the meeting done for the Judge so any interruptions will be documented.

I do think if Connie isn't happy with what is said in the meeting she will be straight on social media about it. This happens whenever she disagrees with something, such as wanting Charlie to go home, or the pastor visiting. They immediately tell CA, via message or video, and it riles up the mob. Will the meeting be bound by any confidentiality, does anyone know?

I never said they should have the final say and every decision should be theirs, I don't know I just feel a bit weird about the fact parents have literally no say

If they've had no say, why is Charlie still on life support right now?

Does anyone else wonder whether, given how he is handling this case, the judge might be hoping this case becomes a giant victory over and message to the 'We're sick of experts' contingent? Trying to close all possible avenues for claims of unfairness and conspiracy?

Confidentiality of the meeting wasn't mentionbed in court today only names to be kept confidential, apart from the American.

CA are now blaming GOSH for 'stopping Connie breastfeeding' and that is the reason why he went down hill!

I just can't believe it, as I said in a previous post, my jaw just keeps hitting the floor!!

A transcript will be available for the judge. I am assuming that would be kept confidential as its a discussion of Charlies condition and thus a confidential medical record.

Catherine Glen whatshername tweeted yesterday asking why GOSH hadn't done an MRI etc; Well she knows why now.

' at the end of the day they are only people who want a baby to live, whether they express it well or not. Whether they're doing it for the right reasons or not and whether they're well informed or not.'

My sentments too Phoenix. Good for you for saying so - on this thread.

The judge is trying to be so very kind to the parents and giving them massive amounts of leeway and I can totally see why. So it gives them no doubt this is open and fair.

BUT

At some point no is going to mean no.

I find it scary that the whole "measure the skull" thing has not been resolved.
Why can Connie (urged on by CA) not see that skull and skin are not the same thing
especially on a child with visible swelling on every part of his body.

I do also wonder how many of the "chunky monkey" posters on CA have overweight kids
its the lack of rational assessment that is depressing.

and YYY to the fact that it feels like the judge is arranging things so that the case law precedents from this case will prevent further ones ...

It is an awful shame that the judge did not order scans.

I do think that CY going in alone was a good idea. I'm assuming CG is more the aggressor, more likely to disrupt and object. That's why they have let her in. She won't be able to copy is behaviour or encourage him,and they can't wind each up, so she may just 'observe'.

I just hope no one (CG/legal team) coach her how to behave, like coughing or moving or tutting etc at crucial points.

The way I see that though is it is CG arguing it has grown. It is also her seemingly stopping the only reliable method of finding out from happening. That in itself speaks volumes and I am sure the Judge is able to see that.

I find it rather crass that posters are getting annoyed that today's hearing is taking "too long".
Have any of you ever been in a court? It's not like an episode of Judge Rinder! The whole point is that it is usually a slow, boring, meticulous process, to ensure EVERY angle is explored.

It is right and proper that the parents have their voices heard. In fact it is the law, so please try to be a little patient.

CY not CG obviously

I don't think it's entirely fair to belittle Charlie's mother's level of knowledge. Don't get me wrong, there is no way she can be impartial, and there is no way that she will have the level of expertise of the experts at GOSH/Newcastle etc. But, with such rare conditions, it is not at all unusual for parents to fling themselves into learning about it, to try to help their child. Yes, I fear she is interpreting what she has heard and read through the rose tinted blinkers of desperate unreasonable hope. But she may well know more about it than, say, most general paediatricians in the country. Because they will have spent so much time learning about everything else as well.

I am worried about what attending this meeting will to do her. It would be incredibly hard to sit through that meeting. Because the experts have to try as much as possible to hold all the full discussions they would have even in her absence, for Charlie's sake. But straight clinical talking can sound very...well, very clinical. Which I think will be very hard.

I think we all very much wish that there were indeed a revolutionary treatment that could miraculously markedly improve Charlie's life. But it really doesn't sound like there is. And in absence of that, I continue to hope and pray that Charlie may soon know peace. And that his poor parents can then find some way to slip away from this madding crowd. I would certainly support them in spending some of the funds raised to escape somewhere with no internet or phone signal, to escape it all, and be let grieve.

I saw one of the posters in CA suggest that he be given calpol instead of morphine because y'know - it's totally the same...(!!!!!)

Howwwww just how have they not measured his goddamn head????

It's his skull not his head. It's not putting a tape measure round his head because that would measure size including any swelling and also would only give a measurement at that site so it has to be done with a scan of some sort.

X-ray is not too good because there is some distortion. Other forms of imaging can be used but can as I said either on this or one of the other threads taking Charlie to the scanner is not a simple job, it involves multiple people being away from NICU/PICU to take him to a scanner.

I'm guessing they would use MRI as that can take multiple 'slices' and a 3D image can be created. I think it would probably be clearer if the news reported it more as a volume than a measurement.

I don't know I just feel a bit weird about the fact parents have literally no say

The parents have had a huge amount of say in this, it just might not seem so from some of the sources. What they don't have is a final say. If you think about it, the only reason that this is in court at all is because the parents and hospital couldn't agree. In the vast majority of cases the medical team and parents will work it out together. By the parents having their 'say' and disagreeing they've got it to court. In court their views have been represented by (free) barristers in the High Court (twice), Court of Appeal, Supreme Court and European Court of Human Rights. Their views have been carefully picked over at every stage.

So they've had loads of chance of a 'say' but ultimately they don't have a controlling voice. The thought of losing that control over something so important is frightening as a parent but it's the only way we can do things if we accept that children aren't the property of their parents.

Ta1kinPeace

I am positive that in her heart of hearts Connie does know that his actual skull isn't growing.