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"

I'm sure the meeting will be bound by 'normal' medical confidentiality laws stitch. But that simply means that the Drs and medical consultants are not free to say anything. CY is perfectly free to tweet/speak about anything that is said or done in the meeting. Unless the judge (as he should) puts a gag order on the meeting until it is discussed in open court. I personally think the results of the meeting should be done in a closed session with a complete gag order on all parties unless/until a final decision is rendered.

That's one of the things that's concerning to me. These types of meetings talk about the patient in sometimes brutal and dehumanizing terms in order to get to the crux of the matter. If CY doesn't like what is said she'll be free to put her own 'spin' on them referring to Charlie as 'it', 'the subject', 'the patient', 'the patient's body' rather than 'Charlie', 'the baby', or 'the child'. The language is purely professional but if things don't go CY's way, it can be spun to make the team look uncaring and inhuman. As if they have no 'respect for human life' when the truth is that the quality of human life is their paramount concern.

i never saw that woods

what i said was why are thy adjourning twice to discuss the same point

He can't order scans. He did suggest it might have been helpful over one element of the case which was the size of the baby's head but may have been told that achieving this via scan would be risky for Charlie's health. GOSH seem to be stuck between a rock and a hard place eg doing what the parents ask (measurements, unknown treatments, letting him go home) is something they feel they can't allow for his sake. He has a guardian in law to speak for him though would like to know more about how this works.

The problem with parental research is that a lot of sources - especially on the internet - are dodgy to say the least and when you clinging onto any hope that's not good. You do need to be able to take things with a pinch of salt when researching. Even if you are researching from legitimate sources a lot can be hard to interpret without the right medical Knowledhe to do so.

I think parents knowledge of their child is good for day to day things but not always in the wider scheme of things. I know DS presents a-typically with his chest issues so have to explain this to new doctors. That doesn't mean I know more then them overall even about his conditions just that i am the "expert" in how he presents. (If that makes sense. It's been a long day!)

And to be honest the parents have no real idea what they want.

Charlie was born seemingly healthy but congenitally deaf.
Within 8 weeks it was clear all was not well.
He's been in hospital since he was 3 months old.
The cause is a mismatch between his parent's DNA, primarily the mother.

He was put on a ventilator back in the spring and that was when the Hospital wanted to move to palliative.
Somehow the counsellors at GOSH were unable to explain to the parents that there really was no happy outcome.
And months later we find ourselves in the same place, but Charlie is much, much iller than he was back then.

In the early spring they could probably have cuddled him for a few final hours.
Now they cannot.

I just feel a bit weird about the fact parents have literally no say

The parents have had huge amounts of say through the entire process, ending with being heard in three separate courts and considered by the European Court of Human Rights. They're even, despite all appeals being exhausted, being supported in opening the matter again in court with a judge who is clearly ensuring they are fully heard and every line of inquiry exhausted. This could, by law, have been shut down by GOSH independently, and again by the judge yesterday. The parents' 'say' is being taken incredibly seriously by everyone concerned, as it should be.

Also for the bulk of his life the medical staff have been very much "in charge" in the sense of being in control of things day to day so sadly they probably haven't even been able to build the instinctive knowledhe in the way most of us can.

Will the meeting be bound by any confidentiality, does anyone know?

I don't know, but as I've said before it's one thing to insist that something remains confidential and quite another to prevent someone ignoring this

I find it rather crass that posters are getting annoyed that today's hearing is taking "too long"

Even when there's already been a "meticulous process" through four other courts, all of whom have agreed that continued life support isn't in Charlie's interests?

For myself, I believe the little lad deserves better than this

Sostenueto, that point about it being thrown out of court is an excellent one.

xpost Gini

Very informative thread. Much better than anything in the mainstream media.

Regarding the clinical meeting, won't the doctors and specialists speak with each other in advance of the actual meeting too?

Are they going to be isolated from each other? Won't they be doing ward visits and such like together? Then speaking to each other about it off-ward?

I suppose what I'm saying is if there's something they don't want to say in front of CY then surely they can say it to each other before the meeting starts/in doctors office/staff room/canteen?

I remember my last ever temper tantrum - I was 8
I totally lost the plot (over something trivial), was bawling like a baby to the point of hiccoughing with snot and tears running all over my face.
I remember getting to the point where I felt a bit silly and ridiculous and was aware that I had just given quite an embarrassing performance that was disproportionate to what I was unhappy about but I was unable to stop. I cried until I physically exhausted myself and went to sleep.

My point is I think CG's parents have fought so long and so hard and so intensively and have been so fired up by the awfulness of the situation and all the 'support' from social media that they are so over invested they cannot now shift from their position.

I am so upset about how long Charlie's suffering has dragged on, much longer than that the whole sorry mess has been in the public eye.
Part of my now thinks they should take him to Rome or the US or wherever because I think he would not survive the trip and they could start their grieving process gaining maybe some comfort from that they 'won'. I dunno.
I wish they had had the strength to allow purely palliative treatment months ago. When I try to put myself in to their shoes, I feel sick and my heart aches - and it is not my baby. Maybe I am over invested too....

Strength and light to everybody involved

Thanks AcrossthePond, that's interesting re the language used in meetings.

Does anyone know what the objection to the chairperson was? I haven't been able to follow all updates.

I agree PacificDogwod. The whole thing is just desperately sad and is becoming uncomfortable to 'watch'.

Puzzled ""Four other court cases"

You and 99% of people on this thread are forgetting that GOSH requested that this evidence to be put before a judge. It wasn't the parents, in this case.

Taken from Ca As soon as they take Charlie away from prison parents should sue both gosh and gollop.

I suppose what I'm saying is if there's something they don't want to say in front of CY then surely they can say it to each other before the meeting starts/in doctors office/staff room/canteen?

But if they want it recorded in the transcript for the judge, it's got to be said in the meeting. Otherwise it's possible for the parents to say that the meeting didn't fully explore all the issues.

IfYouGoDownToTheWoodsToday, its already been rejected by other courts as well though? I am sure.

Isn't the reason this is back in court because the parents threatened GOSH with judicial review so GOSH had no choice but take it back to court?

I imagine Gosh reopened this because C&C were insisting there was new evidence and that GOSH would be condeming him to death without taking it into consideration. Gosh may have known that this treatment would still be futile, but C&C do not believe or trust anything the hospital says so it needed to be an independent decision and not GOSH's, to prevent accusations of gosh being heavy handed and not listening to the parents.

Dorothea they might well not want it recorded and if they do then they can repeat it without acknowledging a previous conversation.

IfYouGoDownToTheWoods GOSH were threatened with judicial review in addition to being called murderers on SM. Not sure they had much choice.

Dorothea, yes I get that but they can have frank conversations outside of the meeting especially if they want to verbalise any criticisms of the parents.

Yes I don't think GOSH did it out of choice. They have made it clear they haven't changed their stance

Thanks cjt. And thanks those of you copying from CA. It's always good to know what other people are saying, and sometimes gives light relief which is much needed.

I think the judge is doing a fantastic job. I think he's looking to make sure that this sort of thing never goes this far again, by ensuring all i's are dotted and all t's crossed this time, so that some sort of structure is set in place and gives precedent. I hope so anyway.

I also think that at least a bit of him is thinking "give them enough rope....".

He seems much less intent on the child's best interests this time, than he has been in his previous hearings. Do you think that's because it clearly didn't influence C&C before.

It's at times like this that I realise how lucky I was to have the family I did, who would not have let me push things this far, but would have made it very clear that my child was suffering needlessly and hopelessly and that I had to STOP.