Charlie Gard 14

[GabsAlot]

This is a thread following the legal and ethical questions raised by the recent court case involving Charlie Gard.

Please could we refrain from insulting or otherwise "bashing" his parents. It isn't in the spirit of Mumsnet and will get the threads removed.

Please could we also remember that at the heart of this case is a terminally ill baby and his heartbroken parents. There are those participating in and watching this thread for whom these issues are painful. Please let's try and be mindful of them when we post. This isn't a place for name calling or trivialising the very real pain they feel. Many parents of severely disabled children are on here.

Lastly, here are some hopefully useful reference points of facts surrounding the case.

13 July GOSH position statement on latest hearing (includes update on Charlie's condition):
www.gosh.nhs.uk/file/23611/download?token=aTPZchww

7 July GOSH statement on Charlie:
www.gosh.nhs.uk/news/latest-press-releases/latest-statement-charlie-gard

June 2017 Supreme Court decision:
www.youtube.com/watch?v=P6rPmvGlNhA&app=desktop

May 2017 Court of Appeal Decision:
www.bailii.org/ew/cases/EWCA/Civ/2017/410.html

April 2017 High Court Decision:
www.bailii.org/ew/cases/EWHC/Fam/2017/972.html

GOSH FAQ page on Charlie:
www.gosh.nhs.uk/frequently-asked-questions-about-charlie-gard-court-case

Medics have explained about the scans on here.
They said an MRI scan would not show evidence of cellular brain damage, that GOSH say Charlie has, in its earlier stages.
CA had a photo of one of Charlie's earlier MRIs and were posting it as evidence that GOSH were lying about brain damage.
The confusion seemed to arise because EEGs, similar to ECGs but done on the head to detect brain waves, have been incorrectly referred to as scans. These are apparently more accurate in detecting cellular brain damage.
As Dr H referred to a scan I would assume that he, as a doctor, would be referring to an MRI. He also went onto say that he was not an expert in interpreting scans and would prefer that a doctor with more experience in this field did so.

twitter.com/JoshuaRozenberg/status/889085850461589505

11122aa - are they suggesting yet another GOSH tactic to allow them to kill Charlie ASAP? Why is everything implied to be some kind of conspiracy?

MRA is male rights activist

According to the Guardian: Last week, Michio Hirano ... told the court that the previous scan showed “no evidence” of irreversible brain damage....

The Guardian are quoting the family; they have posted that but with no reference

Ah, I see - that might make a difference then. I read it as something Hirano had actually said, rather than a comment C&C claimed he'd made

I really do hope this doesn't turn into a general agreement among most of the medics, with Hirano being the lone voice with a different view. I've mentioned before the obvious attraction of having a research subject with such a rare disease and have sometimes wondered if this might affect his evidence ... though as I've also said, I hope I'm wrong on this

I have to be honest, I have flip flopped on the idea of Charlie having access to this treatment. I have tried to imagine myself in Connie and Chris's shoes and when I do, I think that I would want him to try. However, I cannot feasibly see how he would even safely make the journey to an airplane, let alone to America. I picture him dying thousands of feet in the air and the absolute heartbreak that would cause his parents. I mean, if he does die, of course it's life changing and heartbreaking for them but to lose him suddenly would potentially be even more tragic.

I do wonder how much more Connie and Chris can take. They look totally broken and exhausted. I hope they are getting lots of love and emotional support from those around them. I don't mean support about the treatment but just generally being looked after.

Finally just caught up on the threads which move so so fast, too fast for my slow reading lol!
The amount of information and opinion has been a really useful insight into all the ethical dilemmas of this sad case from both sides of the coin. It really does bring home the enormity of it all.
I find it so sad though that c&c seem to have been bolstered into a social media whirlwind for which I genuinely feel they now can't get off.
Im afraid they seem so far from reality and are so disconnected to the reality of the situation that there in emotional hell right now.

I think we all can agree sadly this is only going to end in one way and I pray the judge sees to it that the most caring and compassionate decision is made for charlie (which I have no doubt he will)
But I do fear for c&c they are in a dark dark place and when it does happen I just hope that there is genuine support there to catch them when they fall, as sadly I do think it's going to really impact on them and feel there grieving will also be massively impacted by the frenzy on sm surrounding them.
Because they are so wrapped up in this bubble of disillusion they don't see what we all see.

I just wish they would go spend every precious second they could with there baby, I wish there family would ensure that there are a bloody good team of therapists on stand bye there to help them process there grief.
But in my opinion I doubt they will be able to just stop say goodbye and grieve.
I think that this will go on and on and they will feel the need to continue the story of poor Charlie's life long after.

I do expect to see the interviews on tv the front page story's etc etc as I think it's what they feel they need to do for charlie and without the intensity of social media roaring behind them I don't think they will feel settled or that's enough now we can stop! I feel that they will feel a need to continue, possibly they are afraid of having to suddenly go to processing it all alone.
Which is going to be very very difficult for them after the huge shit storm of CA.

Sorry for the babble, not getting much sleep atm, iv probably made no sense but I get what I mean lol!

Another one is i recall seeing documentary about a funeral directors that work differently to the norm for people who want a more personalised involvement with saying good bye to their loved one, they assisted in preparing the loved one in many ways and were able to then keep them at home for a period of time to say their goodbyes.

Maybe if the case is that they do decide its best for Charlie to pass, then this could possibly be a compromise between the hosp & c&c that once he'd passed they could have him transferred home.
Not for everyone I admit but it was interesting all the same.

I know from loosing my Nanna though that sadly her vent tube was unable to be fully removed as they said that her throat /airway would collapse as we wanted her free from all the mechanical things, when passing and just to see her beautiful face again at peace. But still it was all very respectful.

I think the longer this continues the worse it's going to be 😞

The confusion seemed to arise because EEGs, similar to ECGs but done on the head to detect brain waves, have been incorrectly referred to as scans. These are apparently more accurate in detecting cellular brain damage

Yes, that would also make sense; as a non-medic myself I know how easy it is to get confused with the terminology

It's also true that Hirano said he'd prefer the scans to be reviewed by someone more experienced in this field, but I still keep thinking about his admission that he may have "overstated" things when challenged on his evidence. Though no expert, that doesn't sound to me like the ultra-careful approach doctors normally take, and I confess it worries me ...

All the medics have agreed in this country. Hirano was the lone voice and possibly with support from Italy. I suspect the court delay is for the parents' barrister to gather "evidence". If the other patient is quoted, they can be unnamed. Patient A or child A for example. Reporting restrictions on the name too. It is possible that the parents of this child do not wish to participate of course and be used as evidence. It's very messy!

I have been looking for anything that supports or disproves fthe family's/CA's claims that Prof Hirano said Charlie doesn't have brain damage. The only publicly available thing I can find - which doesn't seem to say anything of the sort - is the Sky News live stream compilation of tweets from the courtroom, and the relevant bit seems to be (you have to read from the bottom up):

Judge: what’s “small but significant”? Expert: depends how much brain damage is structural and I can’t assess that.

Expert: slowing of progession of disease in mice is the basis for expecting small but significant chance of brain improvement.

Very hard to quantify he says. Small but significant. A number above zero. #CharlieGard

Witness is asked if he treated Charlie what his expectation of improved cognitive function would be. Not much but some he says

(the whole stream is here: news.sky.com/story/live-if-hes-still-fighting-were-still-fighting-say-charlie-gards-parents-10946729)

I wonder how the CA will treat Dr H if the judgement is made not to have the treatment?

Will he be the evil doctor who got their hopes up by "overstating" things and giving false claims or will he be the Hero who wanted to save Charlie but GOSH wouldn't let him try? I think unless Dr H actually comes out and says he agrees with the GOSH doctors it will be the latter.

@Puzzled
I don't know if this has already been posted, but according to last Friday's Guardian, Last week, Michio Hirano ... told the court that the previous scan showed “no evidence” of irreversible brain damage

Having seen Joshua Rozenberg's live tweets what Dr H said was he hadn't seen all the clinical notes, but from what he had seen he hadn't seen irreversible brain damage- He said a paediatric neurologist should assess the child plus if there was evidence that his brain was not growing as the parents were disputing GOSH's head circumference measurement, then it would be irreversible. This was interestingly slightly different to what he said in April- that he had not realised how ill CG was until he saw his scans & EEG- it doesn't sound like they were entirely normal then.
I am not sure why he changed this- I wonder how much pressure he has had from White House- Some US politicians have very vested interests in this case.

I think it's better to refer to many Pro-Lifers as actually being "Pro-Birth". They are anti abortion under any circumstances, but once the child is born they are happy to demonise single mothers and refuse state funded medical care to those same children.

Of course it's right in these circumstances to refer to them as Pro-Life, but you can bet your ass if they were being asked to fund a lifetime of care/medical assistance to a severely disabled child through a Federal taxes they'd head for the hills.

I prefer to call them Forced Birchers.

Someone on the Charlies army page wrote something about the NHS being killers and don't go to hospital you will die.
I commented on that saying it was ridiculous and got accused of being a troll!

Looks like JRozenberg agrees it's most likely Armstrong wants more time to gather evidence or has given stuff in long past the deadline.

So if the case now can't be heard in the time cleared in court for it (24th and 25th) there will be more delay waiting around for the next court slot that can be cleared, so very likely the following week. And then the circus can go to town on the whole birthday issue.

It makes a nonsense of all the times the judge has said the child's interests will be put above those of the adults' and delay won't be allowed.

As far as I know Dr H said Charlie didn't have brain damage, or rather that he couldn't see any evidence of it, much earlier when his treatment was being considered by GOSH but had been discounted by them because seizures had led to further brain damage.
I am not sure at what stage Dr H said he couldn't see the evidence but certainly he agreed with GOSh eventually about their decision. He said his treatment would have a vanishingly small chance of any improvement but went on to say that he would be prepared to give the treatment if it was paid for.

Out of interest, does anyone know why there's so much misinformation around the Ashya King case? The version that usually gets cited on Twitter and in newspaper comment sections is "NHS says that young child cannot be saved and must be left to die; parents find miracle treatment which UK patients don't have access to because of death panels; brave parents are punished for going on the run to save their child from certain death". Whereas I gather from links that have been posted on this and other threads that the reality was more along the lines of "child has good survival chances following surgery in the UK; doctors and parents get into a dispute over the best course of follow-up treatment because parents are afraid of the possible side effects of the recommended course of treatment but the patient isn't considered to be a good candidate for the treatment the parents want him to have; parents do a runner with the child and the hospital - rightly or wrongly - gets police involved because of fears that the very fragile, tube fed child will come to harm". In other words, it sounds like a case where there may have been faults and errors in communication on both sides, but the fact that the boy is still alive doesn't necessarily prove that the parents were in the right. Is it just that families in these cases are free to brief the media however they like, whilst the hospital will be prevented from firing back by its obligation to preserve patient confidentiality?

Could the time have been changed because there's so little new evidence to discuss - OK, perhaps I'm being wildly over optimistic. But if there's no real new evidence, and the medics are largely agreed, there might not be anything much to discuss?

Rozenberg's commented that the morning slot could have been used to consider the experts' reports, with the 2pm slot when DrH can speak due to time difference. If not much to discuss then they finish early and don't need the 25th. It looks more like either the judge needs time to read something handed in late, or a party needs more time to be ready.

Ashya King may be still alive but he is still in remission. Until the 5 years is up it's not really possible to say with any certainty that the parents made the right decision.

In going on the run they delayed their child from having treatment that was considered urgent if he was to have the best chance of survival.

Not a lot to say that hasn't already been said, but I just wanted to say that I am utterly disgusted with the threats the staff at GOSH have had.

Who ARE these people doing this?

It's got way out of hand now. How are they going to react if the decision is made to lay Charlie to rest?

Could the time have been changed because there's so little new evidence to discuss - OK, perhaps I'm being wildly over optimistic.

I should think in that case the judge would want it over with as quickly as possible.

Just possibly, another commitment has come up for the judge or one of the barristers which would make it difficult for them to attend in the morning.

But I think it's more likely the judge, and the other legal teams, just need more time to go through this last minute supposed new evidence.

Don't they still have to present what little evidence to the court anyway?

I clearly am in a minority but I found some of the CA posts here formed part of an interesting discussion and they too could be referred back to as to how the momentum took hold, what was being said.

Just wanted to say I agree with you Friendlysnake.

Someone mentioned the Chris Guard post and whether he's sick of CA now, my gut feeling is that he probably is, but as it's his sister running it he may be worried about appearing 'ungrateful' if he says anything or that the army would turn on him and Connie. So he's maybe running with it thinking that their support is better than none at all.

These are just my thoughts though, I am in no way trying to second guess the family or what they may be thinking!