Charlie Gard 12

[muckypup73]

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:

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

On the other hand wtf is going to happen if treatment is approved? Will Gosh be forced to continue to treat Charlie or will he be shipped off (at the expense if the parents I hope) to USA and used and abused by researchers from all over as they say parents have rights over the child in USA? How long will that take? What happens when money runs out? Who the hell has to pay if it doesn't work and he has to come back? Where will he go? Who will take responsibility for him?

Yy Maryz

"If statistically significant is the meaning of significant, is there an actual percentage? And who decides that?"
Just to add, this isn't quite the issue here, since the case is taking the actual results (1 out of 9 off ventilator, additional 4 out of 9 reduced time -- plus 4 out of 9 no change I assume), and from that trying to work out some reasonable estimate of the chance of a good outcome for Charlie.

Lots of unknowns or only vaguely known in there.

First error, I think, is forgetting about the small size of the sample. Nine patients -- and were they carefully chosen (i.e. he only treated the ones who had the best chance of a good outcome) or not? Saying 10% rather than 1 in 9, or 56% instead of 5 out of 9 makes it seem like the 56% chance of some effect is a really reliable, accurate figure. Whereas it is just the most likely value for the chance of some improvement as regards ventilation. But actual value could vary quite a bit. For example, the 10% (which was actually 11.1% to start with), could, if you look at the graphs, actually be somewhere in between 5% to 20%.

If you look at it as saying -- 50-50 chance of no improvement to lung function at all, then even if that is good, you have to factor into that:

1. Passing blood-brain barrier
2. Improving brain cell function
3. GOSH being wrong previously as regards catastrophic irreversible brain damage having occurred.

I think many people have just got the 10% chance of a 'cure', and well, some figures of over 50% thrown about, sounds pretty good, yes? Because most of us are just lousy at accurately assessing probabilities. Which is why I stick to the 1 in 9, or 5 in 9, people do have an intuitive grasp of what that means, you can visualise that.

I keep thinking of the possibility that you could have improved lung function, but no improvement as regards Charlie ability to experience anything. Or you could have some improvement of lung function, plus he could experience pain and react to that pain and the seizures he might be having. Which would look like a worse situation that his current one frankly. The chance of an improvement as regards both lung function and his experience of the world seems to just get smaller and smaller................

Just an interjection here about critical thinking. I agree so many adults are completely lacking and seem to be unable to ask even the simple questions of why? How? When? And so forth.

But my son is in Y8 and I've been encouraged by the critical thinking they're actively encouraged to do, particularly in RE and Human Geography. It's fabulous. However not all pupils are willing to engage and I think that's the problem. Social media gives instant gratification with little effort.

sorry about that gavel its so hard isnt it

when my dm was first ill i was looking up treatments in the US just like connie i came to realise though it would just prolong things not cure and i let it go i didnt want her to suffer for longer than necessary even though i wanted to keep her longer

I dont think thyd bring him back even if he was still alive mary

they wont let go of th hope he'll somehow get better oneday

Well SOMEONE will have to do something. The only thing the parents will agree to is the treatment. So it all was a waste of time really. I know the parents are fighting for Charlie but, quite honestly this is so out of hand now. Nothing will be resolved. So the judge can't order them to agree can he?

This proves meditation is impossible in this case. A chance to change how things work for the better in court cases like thus one has just gone down the toilet.

You can teach a school child to think twice about nicking images and infringing copyright - and that's great, and awful the teachers gave no guidance on this

Her teachers are on such a tight schedule to be fair, they can't just pause their scheme of work to do a session on copyright, I totally get why they have to just plough through and make sure the students have something to show for it.

In the "old days" many classes went off on tangents, and that's where the real quality learning took place. That's not allowed now though.

Well SOMEONE will have to do something

The judge will.
He's trying everything in his power to help the decision arise out of agreement, but if it doesn't he will make the call.

I'm sorry to ask a stupid question, but what does it mean to be a ward of Court and why is it being talked about in regards to Charlie?

i think it means parents rsponsibilty is taken away form thm-they will hav no say in anything further with rgards to charlie

Is this never going to end with peace and dignity?

nope. even if he dies his name and image will be used and abused by pro-lifers and anti-NHSers alike indefinitely.

If he dies CY will be told to "keep fighting" in his name to "Get the truth out"

at this point I don't think peace and dignity is achievable for anyone in this family

so ls can be removed even if they objct they can be removed from the room i should think

SomeDyke Thanks all for the info on statistics, etc. I'm very much a humanities person - this is all new to me!

DarthMaiden thanks for finding that, apologies for covering old ground.

This is an incredibly insightful thread - thanks for not making me feel like a dullard!

I have been keeping up with the threads, but haven't read the last half of this one yet (I will later) but one thing that has been bothering me a lot tonight, I don't know if I'm just repeating what others have said:

• Why is OUR press so anti-GOSH? our amazing world leading hospital that we should be so proud of (didn't Dr Hirano say as much?) and OUR PRESS are reporting this story today as 'US doctor battles unsuccessfully for 5 and a half hours' - making it sound, CA-wise, as if GOSH are bent on this little boy's death for no good reason when there is a "treatment" out there.

As far as I know we don't even KNOW Hirano has been 'battling to change the minds of the doctors at GOSH' - isn't that pure guesswork? yet that is the angle our press have chosen.

Our own press could be saying this instead - or something like it? so why aren't they?

"GOSH still stands by Charlie and will defy all pressure that goes against what they believe in this child's best interests, and we in the UK are proud of them for that.'

I hope to God it won't come to that. The judge has tried to do this as gently for the family and with as much regard to them as he possibly can.

The thing will be how he avoids this whole situation cycling back to the exact same place it was x weeks ago when GOSH told the family they were scheduling removal of ventilation. I still wonder how much the deferring was to try to find a way to do it with them, or with their acceptance, or because they couldn't see a way forward without it becoming something that will traumatise every person involved for ever after. And the family and their lawyers just found another way to get it back in court.

miss sorry to say i know thin thy were stalling to come up with anothr angle and it workd

apple i agree our press are dmonsing gosh over this it shouldnt be lik that

The judge will HAVE to make Charlie a ward of court and goodness knows how long that will take.
Yes the parents are in danger of losing parental responsibilities ( old fashioned custody). This country does not recognise parental rights that's why Charlie has a court guardian to speak for him.

MissHavishamsleftdaffodil, the family cannot get out of it now, they asked for extra time for relatives to come say goodbye, they used that time to do what they have done,they have had their time and that is it simply.

now^