Issues raised by the CG case 11

[Venusflytwat]

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):
http://www.gosh.nhs.uk/file/23611/download?token=aTPZchww

7 July GOSH statement on Charlie:
http://www.gosh.nhs.uk/news/latest-press-releases/latest-statement-charlie-gard

June 2017 Supreme Court decision:

May 2017 Court of Appeal Decision:
http://www.bailii.org/ew/cases/EWCA/Civ/2017/410.html

April 2017 High Court Decision:
http://www.bailii.org/ew/cases/EWHC/Fam/2017/972.html

GOSH FAQ page on Charlie:
http://www.gosh.nhs.uk/frequently-asked-questions-about-charlie-gard-court-case

Of course, the book is all about 'how far would you go for your child' and about the mother, I wonder what happened to the daughter. maybe she got so fed up with her mums preoccupation with her illness and profiting from her she left. Not sure. Apparently she was a miracle recovery though

But then - no.

A lot of these were for Charlie Gard they were posted on Charlie's Army as they were lit up with the people who had organised it posting them💙💙*
*

TinselTwins nope!! The Portsmouth one and some other one fair enough they were but the rest..Someone even said the tower wasn't done for him and the statue is in that article!

It don't matter though..

TinselTwins
I think deaf-blind children can have a good life and contribute and communicate if they're "just" deaf blind
Absolutely.
Helen Keller was deaf blind - but her brain and muscles were sharp and she found ways to communicate
en.wikipedia.org/wiki/Helen_Keller

But Charlie will never be able to do what she did

Mommytomylittlestars,they will not let people on unless you utterly are for their cause, they do not want normal rational people on their page, they want people that will slag gosh off and protest.

TheWeeWitch

Reply to that post, where you can see that some of them are the exact same photos from autism awareness:
"No Amy these are specific landmarks which were contacted to light up blue for Charlie"

No wonder GOSH are having such a hard time convincing Charlie's family about their clinical findings- if they say he has brain damage they Are called liars !

I think there has to be care taken in stating what qualifies as quality of life. Requiring assistance from a ventilator does not, in itself, mean you don't have quality of life. There is a hugely inspiring story in the media this week about a man who has just graduated with a First Class Honours degree in Philosophy and politics, who relies on a ventilator because he was paralysed from the neck downwards in a car accident, two weeks before University started. He completed his degree using voice recognition and eyegaze softwares, and competed in Tough Mudder, also. Very much living with Quality of Life.

Someone may be deaf and blind, but they communicate and function in their daily lives in a meaningful way, for them. They get enjoyment from their surroundings, and it must be remembered that you can be legally blind but have some vision, for example. They may live life differently, but it is still life with Quality.

Another person may be in full command of their mental faculties, but they can't control their body well. They may need assistance with positioning, feeding, and other activities of daily living. They may feel frustrated by their physical limitations but enjoy life.

However, when someone is so severely ill that they are deteriorating despite the most intensive support, and there is no prospect of recovery to the point that they could leave hospital and live life, then treatment is futile.

Mommytolittlestars

The thing is that it's going to cost AUL and the US branch of CA millions to actually pay for Charlie's care if he were to remain in the US after the trial. In the UK presumably it costs his supporters nothing to scream and shout as the NHS foots the bill.

But here in the US it really is a case of 'put your money where your mouth is' and I doubt very much that these same people, who are the first to bleat their pro-life agenda, are going to sign up for monthly donations to cover Charlie's medical bills, which would be astronomical, until he dies a natural death or his parents finally realize that there is no more to fight for.

Personally, I would be very surprised if the Gards are able to find a US hospital willing to admit Charlie for the drug trial. Dr Hirano doesn't have the authority to force any hospital to admit him. IF this drug trial is to happen it's going to end up happening in the UK.

I have been following all your vert informative and compassionate posts.

Sorry if you think I am wrong, but I think the thread is being artificially kept going until next weeks court decision. Seems there is little information being given out at the moment. And I think that is a good thing. We don't know what is going on behind the scenes.

Speculation and all the rest of it will not help matters, but I am no Head Girl telling people what to say or do. I just feel the thread has come to a halt now.

Best wishes.

And they're still fixated on the morphine and him being sedated. He's ventilated, he has to have some sedation to stop him pulling his tube out which, you know, keeps him breathing.

*very.

I find myself wondering what Laura Gard's motivations are. I have no doubt she loves her nephew, but the way she controls the CA Facebook book page - allowing disinformation but no dissent, and claiming the blue autism awareness building lights are for the CG cause is mind boggling and I can't fathom what she is playing at.

Tinsel - I can't post my true feelings on FB and risk being embroiled in a public bun fight because I use my FB profile professionally and have to be v careful about my public posts. I'd bloody love to get stuck in though!

He's ventilated, he has to have some sedation to stop him pulling his tube out which, you know, keeps him breathing.
Sorry?
He cannot move his limbs. How would he pull a tube out ?

sodablack
The ethical issues are ongoing. As are the threads. Thankyou.

That Emma Nicolson is a relative or family friend of C&C (her profile pic is her with charlie), she's posted "proof" of Pisa being for CG by screenshotting a tweet where someone re-tweeted that image in relation to CG

Even though the woman who arranged the Pisa protest by the tower is saying they failed to get it lit blue for charlie, they're completely ignoring her!

I never get why people can't think 'I'm done following this thread' and just click away without trying to end the thread and stop everyone else talking too. Hide the thread if it's bothering you.

Maybe I should try a 'shh now, I'm finished with this subject' on the parking threads.

i think shes in some sort of denial aswell kintan

its got to be or why would you carry on like that

Look! Some of our local buses are lit up blue!

c1.staticflickr.com/3/2831/32249629833_0a987c6f69_b.jpg

(acknowledgements for this pic to Daniel Graham, who knows full well that the blue aisle lighting is linked to no special cause whatsoever, other than looking pretty and helping people find their bags)

Oh and now Lauras getting involved..wonder what they'd done if the colour wasn't blue...as what people fail to understand is its the same colour for both causes so is genuine..apprantly...

Can't argue with stupid and all harsh as that sounds..

lougle I totally agree with every word you say.

Many people live meaningful lives with profound disability and some live exceptional lives with profound disability.

This is not the issue for Charlie, yes he is disabled but he is also suffering from a degenerative illness so the direct comparison to people with disability is not correct.

Laura Gard intrigues me, either she completely believes the rubbish that these buildings are lighting up for Charlie not for Autism Awareness or her motives are more cynical.

Someone is gana get deleted..the person talking sense..

These threads have stimulated a lot of debate about the issues surrounding this case - from parental rights/responsibilities to ethical discussions about drug trials and end of life decisions and also the power of social media and this relatively new phenomenon of online petitioning and crusading.

Each thread has been informative and interesting and i for one have learnt a lot.

Of course Charlie Gard is the centre of the discussions because whether we like it or not that case is currently in the media and is discussed on many platforms. No one here has said that they wouldn't have preferred for this case to have been kept private - but, as been explained several times, the family of that child took this to the media and even today, members of that family continue to provoke discussion among the CA group on Facebook.

or maybe the fact they are Italian/ Catholic locations are relevant

I have my own personal issues with light it up blue, I'm not entirely unhappy with them nicking it, though I do wonder why it's being shared as fact by LG?!

Just because I know someone will ask...
thisoutnumberedmama.com/do-not-light-it-up-blue/