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

Across, thanks once again for your post clarifiying the bill status. I've found your contributions on these threads very helpful, giving us your perspective from 'over there'.

Now I wonder who should break the news to our tabloids and whichever broadsheet it was that also ran the story? Awful journalism.

OK, I believe I've found it:

thehill.com/policy/national-security/342610-house-bill-includes-funds-for-28-miles-of-border-wall

appropriations.house.gov/uploadedfiles/23916.pdf

The bill itself (if I have the correct one) is 100+ pages so be my guest if someone wants to read it over.

Now I'm going to fix breakfast.

Could Charles not be Chris real name but for some reason he uses Chris.

Also to make Charlie a ward of court would mean they would then be an appeal against that decision which would take a few weeks.

Darthmaiden yes I see. Apologies if I worded my question badly - I think it came across as flippant but it wasn't intended in that way. Just trying to get my head around the actual medical ethics involved.

Bit of googling so have some random info

Sorry to Godwin again, but nuremburg code point one for cabbage...

"The voluntary consent of the human subject is absolutely essential.
This means that the person involved should have legal capacity to give consent; should be
so situated as to be able to exercise free power of choice, without the intervention of any element of force, fraud, deceit, duress, over-reaching, or other ulterior form of constraint or coercion; and should have sufficient knowledge and comprehension of the elements of the subject matter involved, as to enable him to make an understanding and enlightened decision. This latter element requires that, before the acceptance of an affirmative decision by the experimental subject, there should be made known to him the nature, duration, and purpose of the experiment; the method and means by which it is to be conducted; all inconveniences and hazards reasonably to be expected; and the effects upon his health or person, which may possibly come from his participation in the experiment.
The duty and responsibility for ascertaining the quality of the consent rests upon each individual who initiates, directs or engages in the experiment. It is a personal duty and responsibility which may not be delegated to another with impunity."

Children cannot (especially babies!) provide informed consent

Then Helsinki declaration...
"Medical research with a vulnerable group is only justified if the research is responsive to the health needs or priorities of this group and the research cannot be carried out in a non-vulnerable group. In addition, this group should stand to benefit from the knowledge, practices or interventions that result from the research."

UN rights of the child is an interesting read too, but way too long to quote!

If, and it is a very big if, Charlie goes to the US for treatment then the very best prognosis that can be expected is that he comes off the ventilator. Any estimated improvement in brain damage seems to be minimal.
Dr H's estimation of him coming off the ventilator seems very optimistic as presumably catastrophic brain damage can also suppress or prevent respiration.
But if he is in the US and off the ventilator he will still need to receive Dr H's medication for the rest of his life. Stopping it will reverse any improvement made.
He will still be a very sick child who will need constant medical treatment.
The costs of all this will be very, very high. The amount of money raised will not last long in this situation.
I find it unlikely that any doctor, politician, pro life religious group or hospital will be prepared to pay for this on a long term basis.

Thank you! BTW, I'm not a fanatic or anything, I'm trying to understand the arguments from all sides. I completely concur that CG should be allowed to go peacefully, but there are clearly compelling arguments against this that I just want to understand.

Must go and pick DS up but will read the UN thing later.

Maryz I'd say it's a bit quite misleading.

Fortenberry Tweet:

We just passed amendment that grants permanent resident status to #CharlieGard and family so Charlie can get the medical treatment he needs.

To be 'factual' it should read;

"The House Committee for Appropriations has passed an appropriations bill for funding of the Wall and Homeland Security which included an amendment recommending that Permanent Residency be granted the Gard family. The bill must now go through normal legislative channels for possible further amendment, debate, and votes in both houses of Congress and must then be signed by the President before it becomes law."

But I guess that doesn't fit in 140 characters. It also doesn't sound quite so 'wonderful' as his misleading tweet.

Significant used by a scientist generally means statistically significant rather than just "worthy" - it is a mathematical figure, not a description

This is all slowly sliding into a farce. That poor baby.

No problem cabbage - I have all the info in my head somewhere, I'm just a bit shit at recall! Googling around the subject does my memory good, so I'm very happy to do it

Just to reply - I tried to check on the images and it does seem they have taken images from other causes - although some local buildings have been lit blue for Charlie.

I don't know if people watch abc American news but there was a longish segment on art junior - who had what I think was experimental treatment - to me it looks like he was not on solids. Has some limited words can unlock an iPad.
So to me it was major round the clock care still - his mum mentioned 6 alarms and 8 machines to keep their son going, they said
3 to 4 treatments a day. And art juniors father who is very religious and seems to get a great deal of strength from his faith also seems very pro experimental treatment stating that is Charlie is treated it won't just help Charlie but lots of other babies. But art juniors dad did also say that the hospital were against Charlie?

I just can't see how Charlie's parents can let him go - I can't see how they can take a break and think of their son - they have so many people around them - the social media and marketing campaigns I think they can't step off from the press either - if he does get some kind of treatment then I imagine they will need to appeal for money on an ongoing basis.

Poor Charlie and his poor parents.

@CabbageLooking

That's fine.

Part of the reason for these threads is to allow people to ask questions.

It's a complex case and I think we've been lucky on these threads to have input from healthcare professionals, ethicists, researchers and importantly parents who've shared their stories and experiences of PICU.

It's certainly raised my awareness on many issues and provided much more relevant information than can be found on social or mainstream media imho.

Acrossthepond thanks for clarification on that.

That actually sums up pretty well the entire problem with modern/ social media.

Beggars belief that our press take the tweet at face value without further investigation.

Thank you for new thread.

This is going to be a long few days for everyone concerned, until the judgment.

I think you take any reports from now until Monday morning as speculation. If the paper says "it is reported that" then that's fine. Just read decent papers who have a better reputation and wish to keep it.

One thing this whole case has highlighted is how much the standards of journalism have fallen since newspapers have lost readership (and thus money) to social media.

With the exception of a very few journalists (Janice Turner in The Times being one of them), nobody seems to be interested in doing their own research, or even doing the slightest bit of verification of facts. Even Radio 4, who I thought would prioritise accurate reporting, were stating completely erroneous facts, mixing up percentages and implying that Charlie could make a full recovery.

It's irresponsible, it's completely unfair on GOSH and it makes a mockery of press standards. No wonder so many people in Charlie's Army and the general public think GOSH are in the wrong - the press prefer clickbait headlines over bothering to tell the truth.

So smilingmind is right; no matter how optimistic anyone is about outcome, he's going to need 24/7, probably hospital based, care for the rest of his life. No matter how much fundraising is done, it will never be possible to pay for that in the States.

And this is what gets my goat. I hate to sound so uncharitable but if Charlie is granted Perm Res and brought to the US, in the end the US taxpayer will pick up the bill. He will not have private health insurance and when that £1.5 m runs out (which will be about 1-2 months) then someone has to pick up the tab. As a Perm Res I'm assuming Charlie will at some point be eligible for Medicaid (federal low income health insurance), which is funded by US tax dollars. I have no objection to Medicaid, members of my own family have benefited from it. But there are plenty of Americans who desperately need help with medical bills that cannot get that help.

AcrossthePond55

He could have put the full text in an image and tweeted that. Or done a series of tweets. I've never managed to say anything on twitter without needed a work around the word limit. So there are ways.

I kind of suspect he chose not to use a work around on purpose. He can claim he was misunderstood, with the need for brevity contributing to the misunderstanding. All while his profile gets raised.

Comes to something that mumsnetters have a better understanding as per the real meaning of his communications (thanks to you) than the people he is supposed to represent. Some of whom are either praising him, or berating him, under his original tweet. They all seem to have read the tweet like the DM did.

Today 12:11 zeezeek

After being sucked into the Sun comments on FB last night (I was away from home and bored so using that as an excuse for the inexcusable) what I am finding concerning from some of those posts is this stance that "as a parent" one would do the same, and that anyone disagreeing isn't a parent. That is incredibly insulting to both parents and non-parents and seems to be excusing the polarisation of people into parent= good and non-parent=murderer

Yes, yes, this is incredibly hurtful to those who have been through this.

Dr H's estimation of him coming off the ventilator seems very optimistic as presumably catastrophic brain damage can also suppress or prevent respiration. - yes I was thinking this too. If his brain damage/structural brain damage/brain cell death has been severe as a result of the progression of the disease (depletion of mitochondria), surely this affects respiration too. As I understand it, the nucleoside therapy, it it works and if it can get to the brain, would increase the pool of mtDNA again which would only help brain cells that were still alive. If the damage was severe enough to prevent normal respiration that wouldn't change that would it. The only people who can assess this of course are his doctors at GOSH looking at his brain scans. I don't really understand why this isn't more clear cut. Don't doctors look at brain scans all the time to assess whether people are "brain dead" or not. Is Charlie in a grey area somewhere where the scans aren't conclusive?

Maryz

As an aside, thanks to GOSH and the NHS (which everyone seems to want to bash), free 24/7 care is what is provided in the UK to patients in that condition. How anyone in the US can criticise it is beyond me

It is 'free at point of use' and I think the people in the US really do not understand or want to understand that we pay (not the government of the day) through our NI contributions and get unlimited healthcare (that even the most generous insurance providers would baulk at paying) from the 'cradle to the grave' (at the moment anyway). They also do not or do not want to understand that UK citizens are also free to take out additional health insurance if they want to, no one is stopping them.

It is a font of ignorance over our different political and health systems and also over the rights children have which are independent from the responsibilities (not rights) that parents have to their children.

Gavel Charlie is brain damaged, not brain dead (I believe this is due to the brain stem being alive).

GOSH believe that the brain damage that he has suffered from both the mitochondrial disease and seizures is catastrophic.