Issues raised by the CG case 11

[Venusflytwat]

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):
http://www.gosh.nhs.uk/file/23611/download?token=aTPZchww

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

June 2017 Supreme Court decision:

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

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

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

Sounds to be they are very much saying to this new doc, here we go, here are the records, scans, you are an honorary doc here for this, it is quite like passing the decision on to him.

Hideously awful situation for all involved 😔 I hope the coming months bring peace for all involved, including the medical staff.

Social media has a lot to answer for I feel.

Afaik, scans and tests and whatever were done on the weekend, dr Hinaro assessed Charlie today, and the mult-disc hearing (with Italian dr too) is tomorrow

I dont know, but all the time is going past, and this poor little baby is being ventilated with attendant damage, no one knows whether or not he is feeling pain - so thank god for prophylactic morphine - but to me it seems so harsh to make him hang on just so the legal aspect is covered. I do understand the requirement to do that, and the ramifications if he died tonight would be horrendous, but but but... he's a little baby, not a mouse in a lab (and I would still expect that mice were treated with respect). I just wish someone the parents trust (family?) would tell them it's ok to let him go, and to let him go peacefully.

Let's get a bit positive. No matter what happens tomorrow I know the judge us compassionate towards parents, he doesn't give a damn about media, will uphold the law to the nth and I completely trust him to do exactly right for Charlie.(fingers crossed, heart in mouth, attack of the molliecobbles)

as regards the percentage figures quoted up-thread, I recall/thought that it was nine patients, one off ventilator and a further four with reduced need.
which gives an estimate (with very big error bars!) of 1/9~11% (I assumed misquoted as 10%), of chance of removal of ventilation. Then we have 5/9~55.5 recurring say 56% chance of reduced ventilation ( including total removal, which some misquote as 10 to 56% chance of some improvement.) And 4/9~44% chance of no improvement as regards ventilation.
This is just messing with numbers NOT actual science/medical knowledge. So a 50:50 chance of passing the blood brain barrier and assuming if it has an effect on lung/muscle cells it will on neurons too, and then we have a rough estimate of a 72% chance of no effect on the brain. Because that is the 44% no effect on vent figure plus half of the 56%(some effect on vent but doesn't pass blood brain).'
The problems here are with nine patients and only one 'total' succes, quoting 56% sounds like you are really sure about the 6! Whereas you aren't even that sure about the 5.

The petcentages are deceptive, better to think one in nine, or 4 out of 9, or 5 out of 9 (very small sample size) and for a different gene defect anyway.............

He's had an EEG, no mention of an MRI just yet. Hirano wanted an MRI of his brain back when nucleoside therapy was first suggested, so I'd be surprised if he didn't want one now to both check brain growth and to assess for structural damage.

Can anyone link to the parents' position statement submitted to the court - i.e. The equivalent to the GOSH one? Would be interested to hear how their case is being put. Have heard the GOSH case repeatedly - but would like to read the parents' position statement or other legal submissions

I predict they will allow the treatment to go ahead.

As far as what happens after that ruling I have no idea....

Will he go to the USA or will treatment be given here?

Will FDA clearance be given?

Can Charlie survive long enough to await the treatment?

Will there be a slight improvement or not?

Will he end up back in the U.K.?

Who knows - so many questions and possible outcomes, it's such a minefield of unknowns.

Like another poster has said, I'm very worried how and where this will end.

I have a feeling that no matter when Charlie dies his parents will be looking to blame someone and it's anyone's guess as to whether that will be the American doctor, the judge or GOSH.

I don't see how parents will ever be able to move on from this

Jinglejangle how do you know he had eeg? And would that show brain us developing?

which probably reduces to what hirano said, some positive number bigger than zero, but impossible to say reliably how much bigger. The data says non-zero, frankly, that is about it.................

Oh yes. Of course it was nine patients - I think I got it muddled up with 11 because of the 11% chance!

If that 11-56 is what people mean by the 10%, and it's not a discrete figure, (you can see why this would be confusing!) then that does improve the maths compared to mine. Still not statistically significant, which irked me when dr mario was quoted as saying it was, but...

I don't see how parents will ever be able to move on from this

CA have given C&C a life sentance!
All those posts about how they love Charlie enough to fight, and that's going to keep him alive
And damning parents who didn't "fight" and "let" their children die

When Charlie dies it'll be a head-fuck, since they've been told again and again how the amount that they love him is what's kept him alive so far

I think the opposite writerwannabe I think he will uphold the original verdict because there us no EVIDENCE it will improve Charlie's life. If ECG was last night it might point to not a positive prognosis hence the parents taking down their fb cos they don't want to answer questions with a negative answer or like I said they had to to make sure they don't leak information on line.

Jinglejangle how do you know he had eeg? And would that show brain us developing?

It won't show brain development bit it will show what levels of electrical activity there is within the brain (if any) and whether that activity is normal or abnormal. They use it to look for seizure activity too.

th only way the media would know he ha a eeg is if family told them

I'm not convinced that the new evidence that it can help a related disorder is actually evidence at all. It's an opinion. Even if the figures for the other disorder were fantastic and statistically significant which they're not.

As ever speculation abounds

The judge made it plain at the start he wanted evidence treatment would work. Expert cannot give that and the judge won't allow experimentation on the premise it MIGHT work but we aren't sure. He wants clear evidence.

Sostenueto Telegraph is reporting an EEG done on sunday. It'll show if there's widespread slowing which is a disturbance of brain function as well as seizures.

In court GOSH said his EEG does not show response to normal stimuli. Hirano said in the last court case it was 'very severe' and that he was most likely terminal.

Meanwhile C+C have claimed his EEG has him at 8Hz normally which is Alpha activity and what a normal brain does when you're resting with your eyes closed. It's a big point of contention.

CA have given C&C a life sentance!

I 100% agree.

The attitude they have is so, so damaging. I think they genuinely think their support is good for C&C but I think it's causing so much harm.

If I was C&C reading their comments I would feel like telling them all to fuck off. They need to give his parents some space to breathe and allow them to think for themselves about Charlie's prognosis. I think the CA are filling the parents heads with such false hope and that it's probably killing them inside.

There's a comment on CA that CY turned off her facebook page yesterday evening, and speculation that this may have been part of an agreed news/communication black out for today.

Good she doesnt need internet randoms speculation

I cannot see how the judge will give permission for anything that would not

• bring charlie off a ventilator
• allow some sort of vision development
• allow some voluntary movement.

Unless Hirano can categorically say that those will happen then the view of GOSH has to take precedence. A treatment that leaves him still blind and paralysed (he was always deaf) is worse than no treatment at all.

Jinglejangle where did you find out about last nights scan?