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

From photos on the CA site there seems to be a lot more support in Italy than in the UK

I think there are a few reasons why it would seem that way.

• Low internet penetration. If you want to come together and make your voice heard in the UK, doing it from your sofa is all too easy. Less so here. Especially as you go up through the age groups.

-Culture of congregation to support and protest. Partly for historical reasons. Possibly also because while we get a similar annual rainfall, it tends to happen over far fewer days. So basically everybody seems to like going out to do stuff in small and large groups in an enthusiastic fashion.

-Political/religious hang over from a case that concluded in 2009. There is still a hankering to change the law that directed the outcomes of a high profile medical case.

-National pride. British (and other N. EU countries) have not exactly held back in terms of putting Italy down. Particularly the last 10 years. Italians are the first to be critical of the failings of its state, systems and culture. But like ostmother people don't like it much when outsiders join in and put the boot in. On this occasion Italy is portrayed as being poised to rush in and "save" a baby from a world renowned British hospital. There is a "not so better than us now are you? Stand back and we'll show you how to do things properly" feel-good factor in that.

-Povero piccolo bambino factor. While the stereotypical Italian love of teeny tinies does get over stated, there is generally a significant sentimentality about little ones.

So... that's probably what moves people more towards pavement stomping rather than frantically bashing on keyboard. But it doesn't necessarily mean that there is a huge ground swell of support that utterly dwarfs the strength of feeling in Britian.

I can't guarantee something won't be lit up blue for a Charlie in my large village/small town (though will be chucking in my twopennith worth if I get wind beforehand). Just this week there has been congregation and symbolic gestures for something far, far, far less sympathtic in nature. But my general impression is that for most people in my community (rural, stones throw from Milano) the case is something they have heard of, but it has not left any durable impression.

Thanks for the explanation, Across!

Acrossthepond thanks for clarifying that . My assumptions on the point of Charlie's position should have been born in the US were incorrect.

Sorry if it's already been noted here (I can't keep up with the threads at the moment!).

The Guardian have just published an excerpt from Modern Death: How Medicine Changed the End of Life by Haider Javed Warraich.

Interesting to read these cases in the context of what is happening right now with the assisted dying case and little Charlie.

www.theguardian.com/society/2017/jul/20/when-life-is-a-fate-worse-than-death-assisted-dying?CMP=fb_gu

Especially harrowing in that ^ article is the account of baby Samuel and his father. Heart wrenching. It shows the polar opposite situation to how C and C are reacting.

magicdoll, it breaks my heart to see Gosh being slated the way it is,its wrong on so many levels.

Definitely more of CA realising the awful truth, but still being hounded by the more ardent Army members.

poster 1 - Each photo that is released shows how much he's deteriorated since the last. He's looking so bloated now.

Poster 2 - Umm he's just a chubby baby like every other baby his age. He's not bloated

poster 3 - He's bloated because he can not move, I guess and because of morphine I suppose

poster 4 -l I agree, poor little baby is bloated from odema. That's not a chubby baby.

poster 3 - It's actually called edema not odema and he's not swollen. He's chubby because he gets a high calorie liquid diet to sustain his body. As he is not moving he's a little chubby. Have you ever seen someone with Liver failure or chronic heart disease? The swelling is prominent. Charlie is just chubby baby like every other baby.

poster 3 - What's wrong you don't like Charlie's pictures coming out showing him very much conscious, awake and able to see? Yes I get that it goes against everything used to justify pulling Charlie's life support however CLEARLY Charlies condition is quite the opposite of what his current doctors are saying now isn't it? They say a picture is worth a thousand words.

Definitely more of CA realising the awful truth

Could be the back channels at work. Some poor buggers will get volunteered to let faction A know that faction B does not approve of the way they are shutting down avenues of discussion.

And like Martyrs they go to their impending banning. But that has lost its sting if the various factions have found their tribe beyond the main page, where they get to express themselves more freely.

Never a good idea for admin to go quiet at a critical point if they don't want the infighting, breaking of ranks and "splitters!!!" thing to happen.

Somebody mentioned social media outraged! groups would be fascinating for a PHD study. Oh boy would it ever.

It has evolved since the late 90s when the format was more limited. But the main patterns seem to be holding fast. I would love to get my sticky mitts on a thesis or ten from people who have the background and the knowledge that allowed insight into all aspects of how they work (and why), from all angles.

Would urge people to just keep on reporting the posts calling GOSH murderers. They do seem to be coming mostly from Italian posters now.

Also GOSH are still reading and acknowledging messages of support being sent via FB. Cannot begin to imagine how beleaguered the staff 'on the ground' must be feeling now.

Taken from Ca what on earth are they doing to him to make him look so poorly? a couple of weeks ago he didnt look this way and now since this new court case he does, no proof obviously but i smell a 🐭🐭🐭🐭rat

The thing to remember is that NO medical provider can choose to disconnect life support over the objection of the family for someone in a PVS, like Charlie. Nor will a US court order it. That only happens when someone is ruled brain dead. What this means is that the bills keep mounting and either insurance, Medicaid, or the family will pay. The Gards would be no different if they were allowed to bring Charlie here for treatment.

So no medical provider can disconnect life support. But what happens when insurance won't pay? Does medicaid kick in? Would they be paying in a case like charlie's where the parents insurance would likely have stopped paying a while back?

Does insurance/medicaid pay the associated costs of not being able to work? Overnight stays near the hospital? If not presumably one parent at least would need to keep working to pay the mortgage and those bills. Which, if they have an average income, again means medicaid doesn't cover?

So in reality, if a child is in charlie's situation the parents need to find money from somewhere, and possibly bankrupt themselves in the process. So while it is the parents decision, surely the financial pressure on them must be huge, so if medics think withdrawal of treatment is the right path, the financial consideration will weigh heavily into the decision.

The gards choice of "keeping charlie alive", must be hugely different to an american parents choice of "keep terminally ill child alive and get into irretrievable debt in the process"

Really, afaik the debt builds up and up and up, and they end up paying it off for the rest of their lives (and unable to get any additional coverage).

Never a good idea for admin to go quiet at a critical point if they don't want the infighting, breaking of ranks and "splitters!!!" thing to happen.

At a guess, Saturday's emergency directions meeting dealt with more than just the eeg issue and the family's lawyer was told to control his clients/ the family were bound by a media black out as result of their spokesman announcing to the media that Charlie was a 'prisoner of the state' and the dirt being vigorously dug to try and discredit Victoria Butler-Cole. Hence CY's facebook page going down and everything going so quiet.

I fear that if / when Charlie passes away in the care of Gosh, there will be even more lawsuits which will go on for years in all likelihood.

Charlies' parents will forever feel that he was robbed of the chance of treatment because of how they believe Gosh prevented him having the experimental treatment.

Poor little Charlie.

One good thing about this thread is it makes you ask questions that you didn't even know you wanted to ask.

I've realised how profound is my ignorance about Medicare. Would it fund high quality intensive care for an indefinite period? Would this be fully funded covering all aspects of the stay in a hospital or, if not, what happens for people with no means?

Laura G has done a few posts today saying admins are not posting any news articles that are unverified.

Nellie?buff Your typo about Morphine and 'bum' fight...Anyone who has been prescribed said opiate knows all about 'bum fight'..the constipation is horrendous. Giving birth is easier, I swear.

The pro life pastor said that CY page was taken down by Facebook against her will, then reinstated.

I can't help wondering what a bum fight would involve

oakleaffy I merrily turned down the lactulose while on big doses of morphine in hospital. I never, ever want to go through that again.

I can imagine this turning out like the case in 2000 with the baby with Edwards, where they insist their baby was given a lethal injection and had her organs stolen after death. Just seems to be the way it's headed.

From CA

His organs are not shutting down ladies lets keep the comments positive

Sums them all up really

Rocksylove. What lawsuits could there be? GOSH have asked a court to decide if they can move to palliative care. All the courts said yes. The parents said there was new evidence from the USA so the High Court is considering if that changes the situation regarding Charlie's care. Most of us think it will not.

These types of cases only get to the High Court where parents and the hospital have a profound disagreement. It does not mean every end of life situation for a child will end this way. Neither does it mean that GOSH will have to continually defend their treatment of Charlie in the courts. This case will be a defining one. The treatment and care will be legal if that is what the judge decides.

The judge specifically said CY could go into the medical meeting. This was argued against by GOSH barrister but the judge agreed CY could attend on special terms. It could be that another judge does the same in another case but until that happens, the hospital can continue its normal practice where there are no disputes.

A thoughtful member of CA posted this in response to the praise being heaped on Trump...Other members saying Trump never lies .

'' He tweets about Charlie as it was trending, after that he didn't do anything. This bill was introduced by someone else, not Trump. If you don't think he lies, you're not paying attention.

Friendlysnakehere...Ah, Lactulose...bleurgh. Like drinking syrup.

Fybogel is better..Poor Charlie is bound to get constipation too, my son was given 'omnopon' at age two after surgery and it bunged him up too...Chemical corkage.