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

NellieBuff

Thank you for sharing your insight. You are so absolutely right that sometimes parents need the right people around them, giving them the right kind of support. Because love is blind. And I fear that Charlie's parents are, instead, surrounded by an echo chamber, ever urging them onwards. Trying to come to terms with such tragedy in the middle of a media and social media circus must magnify the difficulties.

Nellie you're post has made me cry. I never ever want to see that red mist that you described.

The way the papers state it, you'd think it was as simple as popping Charlie in a buggy, whizzing him down to Heathrow and off you go.

I can't remember which thread, but a parent MNetter mentioned it had taken 5 hours to move her ventilated child from ICU to an ambulance in the car park. The dangers to Charlie of this travel must be immense.

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

Read the GOSH position statement, available after a quick Google.

I think the key point is his quality of life and reasonable prospect of improvement (GOSH view), not 'can't feel a thing, might as well give it a punt' attitude elsewhere. Sorry to be flippant, but this 'what's the harm, might as well experiment on a dying baby' line really gets me a bit annoyed.............

Cabbage - well first, setting a precedent for experimenting on dying babies isn't ideal... but apart from that one problem is that diarrhoea is reported to be a common side effect of the NS therapy. Diarrhoea easily kills infants. Then there is that the ventilation is a harsh treatment, the longer he is on it the more likely damage will be sustained or infection occur.

Plus, drs can only assume he can't feel pain based on existing neurological evidence. Morphine appears to have been given just in case. But there is no way of knowing for certain that he isn't experiencing pain or the medication is sufficient

On the US issue, if there is any truth in what is being reported does anyone else find it a bit rich considering the mess that's going on Stateside right now in respect of the repeal of Obamacare?

H.Res.444 — 115th Congress (2017-2018) Encouraging the courts of the United Kingdom of Great Britain and Northern Ireland to allow Charles William Gard and Constance Rhoda Keely Yates to pursue innovative medical care for their son.

They've named Chris as Charlie.

Marking my place to catch up.

Hi sorry to hijack the threat but there is a Charlie Instagram account that has over 100k followers so looks official.

Anyhow there is a picture of lots of different landmarks from around the world - e.g. The tower of Pisa - lit up in blue.

I just wondered if this was the case?

I suppose I can understand local buildings.

Sorry me again, harping back to this US citizenship, if they do go and the worst happens will they be able to bring him back here to be laid to rest? Also if they go and disagree with doctors again will they be able to bring him back or because he is a US citizen will it not be harder?

Oh folks please don't cry - that really was not my intention. And I'll cry if you cry

I was only trying to say to folk to try not to be too hard on Charlie's parents because they cannot let Charlie go. I keep praying that they will - a look, a word - anything that lets them see that it is now time to say goodbye to their child. And I keep praying for all those involved.

Here's the scoop.

herrerabeutler.house.gov/news/documentsingle.aspx?DocumentID=398936

The House Appropriations Committee appended an amendment to an unrelated bill Homeland Security appropriations bill recommending residency for the Gard family, approved it, and has sent it on to the House. The bill it was added to is very controversial its own right as it provides funding for 'the Wall' and for increased immigration enforcement. This is NOT HR3188, which is a separate bill

The appended bill must now go to the full House for a vote, if approved it goes to the Senate for vote, if approved on to Trump for signature.

I can't find an HR bill number to locate and track the actual bill. But as you all know 'the Wall' is extremely controversial as would be additional funding to enforce Trump's 'Muslim Ban'. This bill isn't going to move quickly.

@CabbageLooking

Doctors don't know for certain if he can feel pain.

They do know he is unable to express it, if he is.

That's why they are administering morphine, to ensure he is as comfortable as they can make him.

Being on a ventilator, is not a pleasant experience.

So when you ask "what's the harm" the answer is if you accept that his brain damage is irreversible, then this treatment can only offer minimal improvement to his condition whilst sustaining his suffering.

Encouraging the courts of the United Kingdom of Great Britain and Northern Ireland to...

I would be less irritated by that if it was going to be backed up with a cast iron guarantee that the US would take over complete responsibility and guarantee treatment as good as GOSH can provide with no obstacles and with unlimited costs.

Yes I agree, it's not a good precedent to set but I presume that's not the basis that a legal decision would be made on?

And to be clear, I'm not suggesting that "taking a punt" is the ethically correct decision, I'm just wondering what the legal argument against it is.

Nelliebuff

nellibluff

taratill

Personally I think they should concentrate their efforts on the plight of their own sick and vulnerable citizens before getting involved with the case of a child who is still being looked after with the utmost care by the staff at GOSH.

Can you imagine how annoyed they would be if we were discussing a case in their country in the same way?

If it is decided that Charlie does go to US for treatment who pays for the transportation and doctors/nurses to accompany him in the journey?
Also the equipment that would be required for the move. Where would that come from?

NellieBuff I'm so sorry for your loss and thank you for sharing.

twinklings the majority of the pictures of "blue" landmarks are recycled from World Autism Day last year. They're nothing to do with Charlie but that doesn't stop CA using them as "evidence" that the world is on their side.

Well yes, the legal decision is that a baby cannot consent to experimental treatment, so the court will only allow it if it can demonstrate a significant chance of improvement. Because legally, we don't experiment on people without their permission, so special permission is needed.

Which is what the past court cases agreed - that NS therapy does not appear to demonstrate a significant chance of improvement.

Nellie I do feel bad for Chris and Connie who must be so desperate for any kind of hope. Wish they had someone like your mum for support. They have been badly advised, I think.

BeyondDrinksAndKnowsThings so presumably much depends on the definition of "significant".