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

"I just don't see how the Judge can authorise GOSH to turn off life support though.."
Legally, if he needs to, I think he will. It has happened before:

www.parenting.com/news-break/doctors-take-twin-babies-life-support-against-parents-wishes

www.judiciary.gov.uk/wp-content/uploads/2015/10/re_a_11.pdf

This case is sad, and possibly relevant if you look at the discomfort and signs given by these babies who were on ventilation as well. See also point 18 on page 23, as regards parents hopes and what the doctors say in response.

As regards note at the end, seems that in this case the parents were able to come to terms with the decision, and life support was removed 5 days after the judgement and the babies both died.

• could be even, not will be, even that is not a definite.

annasfarmgirl Thank you. I keep seeing percentages which I don't quite understand. 10% improvement, for example, has come up a number of times - but what form could that improvement take?

Best case scenario is that he can come off a ventilator. His brain damage will not be reversed.

Re the citizenship issue, not sure what CA thinks is happening. I'm a dual citizen, I certainly can't run off to France if a UK court rules against me.

Actually bubbles no! I will not 'read the thread'..... there are too many, and they move too fast

So I will ask..... when I like and what I like..... if it was answered in detail back in the middle of thread 6 I don't care

The American and Italian involvement will concern GOSH sadly. Especially the USA where some type of boycott could be implemented by the mad people with power there.

That way takes the heat off everyone, including Chris and Connie.

Yes, that's the easy way out for the adults, but certainly not for the child.

GOSH staff must have longed plenty of times to be able to say take the child, go wherever the hell you want, do whatever you want, bye bye now and take your endless complaints and media circus with you.

The reason they've put up with ceaseless heat from all sides is because to do this would be to abandon the child to suffering while he's used to meet adult needs. Their safeguarding of Charlie has withstood every form of crap anyone's yet found to throw at them.

.

cabbage I'm happy to be corrected by someone who knows more than me, but I think the thing is that nobody really knows. It hinges on whether or not Charlie has suffered catastrophic brain damage, which is another issue on which the doctors and Charlie's parents disagree.

GOSH are quite rightly not permitted to reveal a patient's personal health information (other than when it is required in court) so we know very little about the doctors' professional opinions. We have information from the parents' side but that's it.

Cabbage, in the nine patients with a different mtDNA disorder who have tried nucleoside therapy, one was able to come off the vent (the quoted 11%) and four were able to have reduced time on the vent (totalling the quoted 56%). Afaik, none of them are riding bikes.

The difference is that the mtDNA disorder they had was muscular (myopathic), whereas Charlie's affects his muscles and his brain (encephalomyopathic), and gosh say he already has significant brain damage that cannot be repaired. On top of the not great odds above, Hirano says there is only a 50:50 chance that the drug can pass the blood-brain barrier (effectively halving the quoted odds), so it might not even be able to reach the area that it needs to target.

thy judg can he already made a judgmnt saying gosh could turn it off-they nicely gave c and c more time which was throw back in their face

It was answered on thread 10 or even 11! Very recently.

Also the parents did not take GOSH to court. GOSH applied to the court to move to palliative care after the parents disagreed.

There is a fundamental problem that if people commenting on here are not willing to read the Court judgements posted, very helpfully, at the head of the thread. These are very useful in informing the debate about this case.

Other reports are clearly different and it is fast moving. The basic facts of the court cases have not changed. Neither have any widely reported dates.

There COULD be some increased mustcle function. Nobody knows if a) nucleoside therapy is capable of doing that for his mutaton or b) whether the artificial nucleosides can cross the blood-brain barrier to be used in the brain where he is primarily? majorly? affected.

Assuming a) and b) did work to any degree, he would still be badly brain damaged. Structural brain damage (brain cell death, in essence) such as he must have suffered as a result of the progression of his disease is understood to be irreversible.

So yes best, best case scenario (but unlikely) is he could eventually breath on his own I think. But would still be in a coma I guess?

Must be so, so hard for parents that less than a year ago had a breast-feeding, responsive baby to accept that.

Judging from what Dr H said in court recently, there is a small chance that Charlie's muscles may be helped so that he may not be dependent on the ventilator. This is not proven as it was only tested on a small group of 10 patients all of whom had a less severe form of mitochondrial disease than him. One of them was able to stop ventilation. This is where the 10% chance comes from.
The question of whether the medication can pass the blood brain barrier is more problematic and seems to be speculative. Medics, including those posting on this thread, have said things such as this is like searching for the holy grail.
Mr H believes it has around a 50% chance of doing so and this is where the 50% chance originates.
However passing the blood brain barrier and then curing catastrophic brain damage seems, as far as I understand, so unlikely as to be impossible. Dr H said there was a more than 0% chance of brain damage being reversed.
Thus the argument rests on how severe Charlie's brain damage is.

I will be honest that I have felt some frustration, impatience and, yes, anger at Charlie’s parents for their stance in this case.

But then I remember I was in their shoes once. And I remember while I sat and watched my little one pass to a place where she would feel no pain or suffering how I would have done anything, and I mean anything, to keep my little one with me longer. Only those who have been in those shoes will ever know how that truly feels. Your heart is broken and your very soul and core is destroyed.
My one blessing is that I had a good DH and mother who helped me see that it was the right decision. I can remember being so angry and frustrated and screaming terrible, and I mean terrible, things at my mum, who stood there and took it. And then she calmly said “once the red mist has passed and time has moved on you will see it was the right decision.”
And, as always, she was right. Charlie’s parents are not at the right place yet to accept that it is time to say goodbye to their little one. Connie is still clinging on to a faint hope and she does not appear to have the right folk supporting her that will allow her to look beyond her pain and see that it is now best for Charlie to pass peacefully and quietly.
I have happy memories of my little girl (although her time with us was brief) but I fear Connie’s memories will be angry, hateful ones and that she will never find any peace.
Regardless of the outcome of the case there will be no victors – only pain and sorrow for Charlie’s parents.

The only reason Gosh did not change to palliative care after European court of human rights upheld decision of supreme court was to allow family more time to gather and say goodbye, then they filed for this court hearing in the meanwhile. If the decision is again upheld they will make charlie a ward of court I would imagine so parents lose parental responsibility and therefore cannot stop the move to palliative care.
Let's hope that won't be necessary if the order us upheld. It may be that they have opted for treatment who knows? If that is the case then I hope the parents sign a waiver for full responsibility for charlie in case the unthinkable happens on his way to USA. I do not think it would be fair on Gosh and our health service if new treatment is carried out here, sounds mean but I don't think gosh should be subjected to anymore blame than they have had to bear at the moment. In a few years time we may not have a NHS and this case is damaging it so much.

*BubblesBuddy

At the time the treatment was first considered in January, or even before, they did not have the money to pay for it!! That is why they started to raise money.*

If they had decided on the nucleoside treatment in January the family would not have had to pay for it - it said in (I think) the first court case summary that money was in no way the issue. (Correct me if I'm wrong but i think i read on another thread that the treatment has been used at GOSH for other cases before?)

The money was raised after GOSH decided the treatment wasn't the right course of action, so that the family could get Charlie to America for it anyway.

Regardless of the outcome of the case there will be no victors – only pain and sorrow for Charlie’s parents.

So true.

I'm very sorry for your loss Nellie. I can only hope and pray that I will never be in such a position.

"10% improvement, for example, has come up a number of times - but what form could that improvement take?"
In 9 patients with a different (but related) condition, ONE was able to have the ventilator removed, and a further FOUR were able to reduce their need for ventilation. As I understand it, THAT is the source of the 1 in 9 off the ventilator (1/9 = 11.1recurring per cent approx 10%), and the 11 to 56% chance of improvement (since 5/9 equals 55.5 recurring per cent, approx 56%) that have appeared in the papers.

These cases are for improvement as regards ability to breath unaided, and not like Charlies case, where the brain is involved as well. But IF the therapy worked and helped with muscles, there is then the issue of can it pass from the blood to the brain (very little info, I think lab tests and a figure of 50/50 chance quoted, but no one really knows). Then we have what effect it will have on brain cells AND would that have any impact on Charlies ability to experience anything..........

Hence Hirani and the some number bigger than zero but not able to say how big that I think we had in tweets from the court case the other day:

So, Joshua Rozenberg tweeted:
"NY expert: the 10% change would be in muscle strength. Small but significant chance of improvement in encephalopathy."

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

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

BTW I don't know if the 10% quoted above is change in muscle strength, or chance of improvement in muscle strength.

Ah, here we go, the initial quote from Hirani:
"NY witness: since April we’ve evaluated more data. I estimate chance of success to be at least 10%. Of 9 patients on ventilators, one is off..."

"NY witness: treatment shows 11% to 56% chance of clinically meaningful improvement in muscle strength, measured by time on a ventilator."

That's the 1 of 9 off the ventilator, 4 with reduced time on figures I used at the start. I assume Joshua Rozenberg is fairly reliable with his tweets..................

The current hearing is about hearing new evidence. The USA Dr had not examined Charlie prior to this so the judge asked this to be done. He had never visited Charlie before he gave evidence to the court case in April. The parents said they had new evidence in July and this is why the case came back to the High Court after the EU court declined to intervene.

The judgement will be based on whether the new evidence is sufficient for the judgement to go against GOSH who, it is reported, are not changing their position.

It is reasonable that new evidence is considered but when C and C said they had this, there was doubt because Hirano did not have all the medical info about Charlie. Hence the examination, meetings, exchange of info and a transcript going to the judge for him to consider. All
parties will need to consider their position before the court case resumes officially next week although it has been reported GOSH remain of the same opinion and possibly the parents too. The judge hoped they could all agree.

All of this, in any case, is a red herring and as said above, this baby and his loving parents are being used as political pawns in other people's power games. It's sickening

I've just heard an argument that it is not so different over here in that regard.

I have just come from talking to a student about the case. She holds the opinion that some people, with political/religious motivations, are essentially looking to overturn an argument they lost in 2009. That under the "povero bambino" (likely entirely genuinely felt) there also lurks a long held desire to achieve a change in the law. And public opinion being strongly revived and swayed would be a necessary component on the road to achieving that aim. Hence blue lights and massive hashtags on public buildings.

The case she referred to had some differences from Charlie's. It centered on an adult female in a persistent vegetive state from 1992, her father petioned to remove her feeding tube. It is well worth a read of the wiki to note political and religious positions at the time, and how they were expressed It was quite the legal/political hoo har.

Thank you smilingmind that's really helpful.

With regards to the severity of the brain damage, presumably this speaks to the "quality of life" argument? If he is so brain damaged that he can't feel pain (I think I saw that on a previous thread) presumably the extra treatment won't harm or hurt him even if it doesn't, in the end, necessarily make him better.

I suppose I'm asking, what's the harm in doing the treatment?

"Afaik, none of them are riding bikes."
I have tried to find the case referred to in the CA poster (girl on ventilator in bed, then girl off ventilator on bike after therapy.). I can't locate it, and the only case I can find in the news is a boy who is still ventilated but has some quality of life. So, we can't even say if she is one of the 9 patients mentioned by Hirani. But she could be.

This business of Charlie Gard going to the US is wishful thinking. However, that doesn't mean it can't happen. Let's assume he goes. Once he's there the treatment and associated costs could easily burn through £2M in a matter of months. Once he's there many of the supporters both in the UK and the US will think "job done" and move onto the next crusade. Any hospital which agreed to take him know they could relatively quickly find themselves with a problem of a patient who was burning money with no means to pay it. Once the fad of the campaign is over and the money's gone, then some organisation, probably in the UK would face the nightmare task of arranging his repatriation.

That to me is why GOSH don't want him to go. Because they realise how likely it could be that they will need to pick up the pieces in a few months' time when the matter is even more complicated and they have control vover ery little. And all would have happened for no benefit for their patient.

Yes Sargeant. I expressed that poorly. It was after treatment was refused they wanted to pay for it. You are correct. This is when the major disagreement began.

I would assume if he goes (a massive assumption here) he would not necessarily come back to GOSH. They would not necessarily have to have him. Other hospitals have refused when relationships with the parents broke down. I do not believe they must re admit him, but I don't think he will go anyway.