Charlie Gard 17 re started

[muckypup73]

Ok guys, we have been very lucky to discuss this, please lets not give anyone anything to complain about, Mhq have been more than accomodating.

Head
My personal opinion is: they don't want to let them take him home because of all the logistics already mentioned, the fact they want him there for days not hours, but mainly because there is no trust between them. I think they're worried that once he's there C&C will point blank refuse to intubate or something, and what can they then do? Many HCP on this site have said even if they were insured to go there, they wouldn't, for fear of litigation etc.
I read a comment from another parent whose child was also in PICU, they said the atmosphere telling there was absolute toxic, could cut tension with a knife, so definitely see why C&C don't want to be there
I think hospice is best compromises. get him out of GOSH, let parents say goodbye in an environment that doesn't have so many negative connotations for them.

Can I ask a question about the ventilation situation.

Moving Charlie (or any other patient) from the big hospital based equipment onto a portable one would mean disconnecting him briefly, or can they hook up both at once and then switch between the two once it's all ready?

I don't mean for getting around stairs or moving anywhere, just wondering about the practicalities of swapping from one machine to another.

FWIW I saw a tweet yesterday that said KG had another case in court today bu it was this morning.
I commented on the thread about it as it was tweeted.
I can't find the tweet now so take my words with a pinch of salt. (But I definitely saw it )

This topic is now drawing sadly to a close. I think there has been something of a lack of empathy and unwillingness to fully consider the feelings of the family and those who wanted to support them. There have been a lot of patronising comments and, in this most difficult of moral dilemmas continuing assertions that cannot be backed by anything other than a blind following of particular views when a problem solving approach from day one might have worked better. A willingness to work with the parents at a much earlier stage and a willingness to look for new solutions has been sadly lacking and hopefully will be addressed shortly. I think the huge sum of money raised which opened up new possibilities did not creatively engage GOSH in the way that it could have. Hopefully hospitals will learn lessons from this.

Posted at 12.43am today. Don't think Pistonheads like us too much.
Obviously we, with our many 'experts' are a challenge to their sole 'expert'. How silly.

I had a look on mumsnet to see what the screeching harpies on there had to say about it all and found a post related to Wiccan's explanations, which someone must have linked or copied over
Scroll to the post at 19:31 and it sounds like they decided Wiccan was talking bks as there is talk of 'debunked'.
I wouldn't waste your time trying to spread some knowledge in their direction, Wiccan, as they apparently know better and you were 'mansplaining'.
It's just one post but suggests mumsnet have read what I wrote, either didn't understand it and needed more mansplaining or got huffy because a man just happened to be able to a) know what he was talking about and b) be able to explain a complex subject fairly eloquently. Meanwhile, I had a little peek at their forums and they're not too happy about Charlies Army. But the extent of mumsnets technical knowledge so far have been pasted extracts from wikipedia.

Hamster, I don't know for definite re vent, but in other situations there are multiple ports on the line, so both can be connected before one is removed

I cannot imagine what they or the medical/nursing/auxiliary staff involved are going through. Or the families of other desperately ill children at GOSH.

It's so desperate for everyone involved, primarily the baby

"But the extent of mumsnets technical knowledge so far have been pasted extracts from wikipedia."

Yeah I saw that... No comment.

I think in cases like this, it's very hard to 'compromise'.
The ventilator will either be turned off or not. There really is no grey area.
I'm sure all hospitals will look very carefully at their policies though, to see what can be done to prevent such a breakdown in future.

This topic is now drawing sadly to a close

Far from it, the wider implications are still in the balance

ExConstance just because GOSH haven't posted on SM everytime they "Gave an inch" to the family, doesn't mean it hasn't been happening

We already know that they have broken their "only 2 at the bedside" rule for C&C and allowed them in WITH their press team! AND with a braying preacher, so it's safe to say that they HAVE been negotiating and giving all along..

Oi fucking pistonheads..I have a DPhil. What have you got??

I'm not quite up there yet, but I am a third year medical science student :)

Constance, have you read the court papers, especially the judgment from the first court case back in April? It was never about money. The sad fact is that there is no treatment that could have helped Charlie. No doctor anywhere in the world has offered anything more than a very small possibility of a very small improvement in Charlie's condition, and he said even that was unlikely.

I do wonder though, about mediation. And if it fails early on whether that would be the time to move hospitals

That does not usually solve anything, it usually makes it much worse and just escalates unhappy family's stress as it ads in so many factors that can lead to misunderstanding (from timings of transfers to the slightly different ways different units do things)

Constance, what evidence do you have for your assertions here?
when a problem solving approach from day one might have worked better. A willingness to work with the parents at a much earlier stage and a willingness to look for new solutions has been sadly lacking and hopefully will be addressed shortly. Hopefully hospitals will learn lessons from this.

It appears - from statements GOSH has released, and Judge Francis's judgement - that GOSH HAS bent over backwards to accommodate the family, but that the family has not been willing to negotiate or meet them halfway, and has not listened to what they have been told.

Flowers - they have a certificate in mansplaining

On the last thread I mentioned the woman who had called into the Jeremy Vine show to talk about her son who she lost some years ago.

He had suffered brain damage at 4 months old (she described it as an "almost cot death" after he was found blue and not breathing in his car seat). She said someone told her that they'd know more about his prospects after 6 months, so she became fixated on the idea that at 6 months he would be "normal" again. She said she marked off the days on the calendar and planned a party, but of course it never happened.

She added that people told her to look at "special schools" for him but she was adamant that her son didn't need them. In reality he would have been one of the most severely disabled children there.

Long story short over time she came to realise that she had been living in denial about the extent of his condition and when he was 5 years old they decided that when he contracted a chest infection (he suffered dozens of serious infections over the years, each would have killed him if left untreated) they would not treat it. He died a few days later.

She was making the point that sometimes, in the depths of despair and grief, it can be easy to shut yourself off from reality. She did, however, add that if she could tell the Gard's anything right now it would be to "let him go".

All these doctors they're tweeting, do CA think they won't have heard of him?

Student doctors. Really? And get struck off before you've even started your career? Like a medical student would know their way round a ventilator?

thanks nellie your poor colleagues i hop this stops for u soon

One of the worst things for me is the general public/CA lot, latching on to the 10% potential chance of some small possibly not clinically meaningful improvement in muscle function and interpreting this as a 10% chance of a total cure. From conception this child was sadly destined to die from his genetic condition.

Allington Yes, that point struck me as well - I know there have been studies showing that people genuinely believe they haven't been given particular information when in fact they have.

The funny thing is that the headline really didn't match the overall tone of the article - looks like the sub-editor who wrote the headline may share our feelings about some aspects of the article!