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"

@JN Court lifts restrictions on naming Michie Hirano to be named as the expert who gave evidence yesterday:

ooh wondr why they lifted the ban on prof.

SFJ The judge wants to lift the ban on the naming of the U.S. witness who gave evidence via video link.

We have no way of knowing how long pain relief may have been being prescribed. The parents repeatedly told CA he was on none, however unfortunately they have tended to share what supports their view. It was only when the most recent return to court took place GOSH stated that they were giving Charlie morphine. It may have been months. I also wonder if it may be to do with the oedema. Many posters have mentioned that they found having oedema very painful. If the hospital very usually prescribe pain relief to children with oedema they may have felt it was wrong not to give the same to Charlie just because he has no way of demonstrating whether or not he is aware of pain.

What struck me reading GOSH's statement - they deal with the most ill, most desperately disabled kids in the UK. They deal with the children other hospitals need support with, they do the cutting edge stuff and have the know how for the conditions that can't be handled locally. I've worked with children who are very profoundly disabled, deaf/blind/quadraplegic with profound learning difficulties, severe physical difficulties and on tracheostomies, awful epilepsy syndromes, going through their nth surgery re constructing bowel out of what's left from all the previous attempts to create a bowel, having end of life care for a rare and terminal genetic illness, and in all those cases GOSH were fighting for those kids so hard and so positively. They are so used to seeing kids at the extreme edge of illness and finding ways to get some quality of life for them. So if they feel Charlie is so extreme a case, so without quality of life, considering the severity and extremes they are very used to dealing with - that has to be taken very seriously.

The statistics used are problematic. Apart from mostly being made up, there are different numbers relevant to different "events", so you might see 10% here, a different 10% there, 50% there, 56% over there. This leads to people choosing the number they like best, for example the highest number and it then becomes a 56% chance of a happy child running around outside enjoying the warm sunshine.

The problem is that where you have a chain of numbers the "real" statistic for a chain of successful events requires multiplying the numbers together which could be something like 10%x10%x50%x56%. This would be well under 1%. Assuming you can get to that point, you'd then need the miracle of the brain repairing itself.

I've just played with numbers I've heard being kicked around and have not a clue what a real number would be to see, say, an unresponsive Charlie Gard off life support.

@SFJ It was Michio Hirano MD from the Columbia University department of Neurology. He heads the Division of Neuromuscular Disorders.

Are we ok if I skip out who is tweeting and just post the tweets?

BREAK: Michio Hirano proposes to come to London next Monday and Tuesday.

I think they lifted the ban on naming the professor as it was published previously in the USA and is already all over the internet.
It was a bit of a farce.

Armstrong: Prof Hirano proposing to come to UK on Monday for meeting with other clinicians.

Link to lab of Michie Hirano,

columbiamitodiagnostics.org

At least they have scheduled him coming quickly!

Looks like the specialist will come over next week, extending the decision-making time. Poor Charlie.

Hirano will meet the experts at GOSH who have been treating Charlie Gard and other specialists. #CharlieGard

Ok, more delays, then.

this is going to drag on isnt it

Exactly rabbit. He was named on one of the FB groups a few days ago. The post was removed eventually.

@SFJ The conditions of the court order mean I can't name at this time the other specialists and medics who will attend that meeting on Monday.

You can't see his link on the lab page, it seems to have been deleted.

MissHaversham in their position paper GOSH say the morphine is a recent addition.

What do you all think may happen after today?

On previous form I think there'll be more delay ... and more ... and more ... in the belief that Charlie will slip away on his own in the meantime, thus saving anyone from making a hard decision

I only hope I'm wrong

This should all have happened months ago.

Lovely maybe, or maybe half the world is clicking on that link and their website's gone down.

Thats a good thing he iscomming,he will be able to say if charlie is too brain damaged that the treatment will have no efffect, and then there will be no choice but to let charlie go to sleep and pass away with dignity.

columbianeurology.org/profile/mhirano