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

JayneEyre70 He's the type of person who's very at peace with his mortality. He's planned for when it happens, because he knows it'll happen to everyone, and he has things like a living will in place. But I've seen patients families who've been downright shocked and angry that their terminally ill relative has decided to opt for end of life care rather than trying anything and everything. It's caused massive family rifts.

I really feel sorry for the staff over at GOSH. They've had people spit on them on their way into work because they've stuck to safeguarding Charlie. They get abuse online. They get denigrated (suddenly, they're not experts despite treating thousands of kids with mito... with nucleosides to boot). And they're expected to let shouting american pastors in to disturb extremely ill patients and their families in the ITU.

If true about the EEG I'm trying to understand it.

It's not invasive, so there is no reason not to allow it on grounds of any discomfort it might cause Charlie.

They are adamant that "he doesn't have brain damage" or that "he has some brain damage but it's not structural and not catastrophic" - depending on which interview you quote.

If that's true an EEG would help support their assertion. I'm guessing you would see a lack of fitting and sleep/wake cycles which would indicate awareness (please can any HCP's advise if I'm wrong about this).

Not having a scan or a longer scan just leaves the doctors all postulating what the extent of the damage is - especially the US Doctor - and thus retaining the status quo of "we don't know" and thus they only way to tell us to try the treatment.

I think it's impossible to expect the US doc to come out a flat out "no"

He's being asked what the treatment can do, and it could do something , it's just that a small reaction isn't worth the harm that fighting CGs poorly body to keep him alive long enough for the treatment could do to him.

But CA and the family I think would take that as a "yes" from him, and it's not a yes either, it's not a yes or a no IYWIM

If that's true an EEG would help support their assertion. I'm guessing you would see a lack of fitting and sleep/wake cycles which would indicate awareness (please can any HCP's advise if I'm wrong about this

I don't know much about EEGs, but yes they do show sleep cycles and seizures.

Apparently CY has posted online this week that DrH has said that they treatment would work

That doesn't mean anything

Everyone knows the treatment "works", GOSH never denied that

What is in question is whether it working a little on Charlie would be more of a cruelty than a kindness!

How are you all discussing this in RL or are you not given that we can chat here?

Im a researcher and most of my team (regardless of whether they have children or not) think that the chances of this treatment working are remote and so he should pass away.

The few that don't tend to be admin or support staff and freely admit that they don't understand the science and so are going on their gut feeling "as a parent" - those words that never fail to piss me off at the moment. As a parent I made the decision to switch off my son's life support and as a parent I would do the same for my two daughters now if they were in that position. Before I had children I fully understood the love that parents had for them and still would have made the same decision. Giving birth to a child does not suddenly make us magical, powerful intuitive people, particularly not when we are in the midst of an experience like this.

I had no mother's instinct telling me anything about my son when he was on life support. All I saw was this tiny body being forced to breathe against his will. That is completely different to knowing when DD2 has yet another ear infection because of the way she holds her head - that is because I have observed her do it over the last 8 years so recognise the signs.

I'm rambling and totally messing up what I want to say, sorry.

That most recent photo of poor Charlie is awful and maks me feel very uncomfortable looking at it. It feels somehow intrusive.His eyes may be (partially) open but they are not seeing anything and his body is even more bloated. He is clearly very ill.

Each time they take another photo and put it out to the media they strip away a little bit more of his dignity. It is so sad.

And that's the whole problem with the fake news/bad science led CA

If DrH's testimony = "I think it would have some effect" that does not contradict any statement from GOSH re it not being appropriate for Charlie given his current condition.

But they would read those two statements as at odds with each other, and they're not!

worst bit about an EEG (both DH and Dd have had them as part of sleep assessments, and DD volunteers for them for research projects at uni as part of her degree) is getting the glue out of your hair afterwards and your mum laughing at you cos you look like a Dr Who monster. For DC I believe they can use some kind of a cap which has the electrodes already in place - it would be quite tricky to keep a wriggly DC still for long enough to place all the electrodes I'd imagine.

It is all such a waiting game now and all the while Charlie remains unresponsive and unable to function in any way by himself. I don't think for one minute the judge will allow such a sick baby to be removed from PICU and transferred to the US as the potential for him to die en route must be very high.

Has the American doctor ever offered to treat him here in the UK? Would that even be something that was considered? I assume there are all sorts of complex laws about untested drugs and where and how they can be used.

In RL the only people being vocal about it are a few people who all happen to be on the lowest pay grade (no qualifications required). There are plenty of people on that grade NOT discussing it, but everyone who is fits that bill

Everybody else avoids joining in unless to occassionally correct massive missundersandings (e.g. "why don't they just book a flight and take him to america?" … then someone will say something about medical transport) but generally people just act like it's not even worth engaging in the discussion with them

The atmosphere when one of them pipes up is akin to pre-referendum. Just don't go there!

Im quite sure (as sure as you can be about this anyway!) that even if the judge rules treatment should be allowed, he will want it to take place at gosh.

I have had mixed discussions about it. Some people agree with my pov, some don't and the latter are split between people who have an inherent mistrust in the NHS/permitted treatments and those who are strongly pro-life. All discussions have been courteous, however, whatever views we hold as individuals.

The "as a parent" brigade are annoying me too zeezeek

I couldn't have children but that doesn't make me or anyone else in a similar position incapable of empathy like some (especially in CA going by the insults thrown against people who don't toe the party line) seem to think.

I don't know for sure why Charlie's parents objected to a long rather than short EEG, but it is possible that they felt that a longer EEG might cause him some discomfort, even if small. Much of what is lately being reported in the media is not very reliable, however. It seems that a Republican bill, mostly about Trump's wall etc (which I personally do not support) could give Charlie permanent residency if it passes. There currently appears to be no attempt to give him citizenship. However, whether or not it passes, Charlie could still enter the US, as I have seen a photo with his passport and a valid US visa. He can enter the US as a UK citizen with a visa, and could travel if medically supported (obviously not in the normal way). Should he ever become a dual UK/ US citizen (which he is not) yes he would still be subject to UK laws while in the UK. I don't intend to post further, as I find the whole situation quite upsetting, but I do have sympathy for his parents, and hope he will be able to travel to have treatment (or be permitted to have it in the UK).

Me and DH have discussed Charlie a lot. We both feel that with every new picture he looks sadder and more ill. It has reinforced both our views that we would not want to be kept alive in that sort of situation. We are both early 60's and thankfully pretty healthy but we are going to look into living wills

I see from the watermark on this picture that the Featureworld deal is back on, then?

I think if the media just called it "experimental treatment" every time they mentioned it, that might make a difference to the public perception

Sorry for another question, just that this is one place where there seems to be a wealth of knowledge.

If the judge rules in favour of the treatment, could doctors at GOSH be forced to administer the treatment against their professional opinion and ethics? Assuming he can't travel that is.

Your eyes being opened is not the same as voluntarily opening your eyes on purpose

Lots of corpses have eyelids that happen to be open, they are not, however "opening their eyes" - the former is passive, the latter is active.

I think Hirano has been getting some bad press. His scientifically accurate figures (the 10%, 11% to 56% figures) and statements are correct, but liable to massive misunderstanding. As regards the therapy, for kids who already have a quality of life which is gradually being lessened by their need for ventilation -- if his therapy can reduce or remove that need, hence give these kids more time with their parents with a better quality of life, then that is a worthy aim. But this is the patients with a different form of the disease.

I can fully understand that he would be/was formerly willing if the parents are (the US style approach), and I'm sure that he would be interested in seeing what effect the therapy could have in such a case, can it pass the blood-brain barrier and effect brain cells, would it be a possible therapy that could work on patients and so on. The questions he is supposed to ask as a researcher.

Except in the press, his careful statements are being presented (or in some cases misunderstood) as if he is offering a possible 50% chance of a cure, or a very significant improvement (by which I mean Charlie experiencing the world, not just off the ventilator).

On a previous thread, one poster reminded us that Dr Hirano is heavily committed to research and wondered if the obvious attraction of testing his theories on a subject with such a rare disease might influence his views on Charlie's treatment

I obviously don't know whether this is so, but it seems at least possible that the judge could end up with numerous specialists who feel Charlie shouldn't be actively treated, four court judgements which agree with them and one or two consultants who'll say it's worth trying

Under such circumstances, I wonder what he'd do ...

It is telling IMO that no videos have been released of these things that Charlie can supposedly do. A still picture can be interpreted anyway you wish if your bias is strong enough.

If the judge rules in favour of the treatment, could doctors at GOSH be forced to administer the treatment against their professional opinion and ethics? Assuming he can't travel that is

I don't think they are so much against the actual administering of the medicine so much as against prolonging his life support (which is required in order to have treatment)

And they are already right now having to do that