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

Jinglejanglejobs
That absolutely makes sense. Read BG has some bad publicity recently - so 'giving Charlie his chance' is very good PR for them too.

Oops. Meant to include a screen shot -

Laura is Charlie's aunt, connie's sister

A thunderclapp is when lots of people agree to share a chosen post at exactly the same time (e.g. 8pm) so that it comes up as "trending" on social media sites

Laura Gard. Charlie's Paternal Aunt.

A thunderclap is when people collaborate to post the same message on social media.

Theweewitch
Thank you for educating me :)

TheWeeWitch I think it's the cheek of it that annoys me. That someone has Googled..posted and then everyone goes on how amazing it is..except it's for a completely different cause

I just don't get why no one questioned it. Blackpool Tower said no..London Eye..no yet the Leaning Tower or Christ statue went ahead simple as.
Guess people believe what want to believe but still!

Having a child with Autism myself, I resent the things that they are doing that represent Autism, it has taken a long long time for people to recognise Autism and then you get people that think diagnoses are handed out like smarties, Our family have gone through hell and my son only got his diagnoses last year, he is 10 now, it is Autism awareness, if Ca want to do something, they can, use pink, or green or whatevr, just do not use the Autistic stuff.

No problem!

(or is she Chris's sister?)

LetsGoFlyAKiteee, Blackpool tower lights up bllue every night anyway, so whoever posted that was full of shite, I know i can see it everynight.

chris's sis

Having an autistic child I know when the pics of 'lighting up blue' are from!
Sad to see a direct relative (guessing it's really his aunt) spreading such false stories on social media.

Exactly, the CA lot believe anything they read so prob do think that those landmarks are lit up just for Charlie, but the people making those photo collages know it's a lie, so why do it?

Someone has posted that the tower wasn't lit up for Charlie..can't see that be acknowledged

Being..

I have no problem with untested utterly experiments treatments
IF
the person receiving them understands and has given consent
OR
its pretty certain that the person receiving them will benefit significantly

For Charlie Gard I consider significantly to be

• off the ventilator
• able to develop some vision
• able to move limbs

without all three of those, any treatment would be cruel and inhumane

FWIW a family member signed up to a v v v early trial of an utterly untested cancer drug - it gave them three more weeks of being up and about than expected before they died ; so was a good choice. And the drug has now finished tests and is now saving lives

Nothing proposed for Charlie sounds like it will give him a break from being deaf, blind, paralysed and ventilated.

Ta1kinPeace,someone said at best he will come off the ventilator thats it, then he will have the side affect of dihorea, which in condition could probably be lethal, if connie has already almost lost charlie in the last few weeks, then it sounds like he wants to make his own way out.

Just having a poke about on twitter and found this image. Looking at this it's easy to see why the family keep sharing pictures of Charlie as a tiny, alert baby. Poor little man.

i wondr if laura knows whats happened today or thy purposly havnt told certain people yet

you would think she wold stop posting false hope

weewitch
good grief, even allowing for perspective his head is looking out of proportion

When the judge set the dates I thought the week between the clinicians meeting and the hearing was to allow a week to say goodbye, without any appointments intervening.

Pope tweeted only that but others from Vatican got in touch with family, got some 7 experts to send letter to GOSH & asked for transferring him to Bambino Gesu, even considered giving him Vatican passport.

Maybe i misunderstood then, it's been difficult to figure out fact from media spin.

I thought the letter came directly from the experts at BG, which, while billed as the "papal hospital", the pope is not directly responsible for the actions of it's staff, or the sending of the letter.

The vatican passport i had down with the US passport theories, more media/ca than based in a hard offer.

I have no clue what is fact and what is fiction any more.

Weewitch Oh my goodness that poor boy :( He's so beautiful, this situation is heartbreaking.

The US expert said something like 'he may regain some muscle function' ( like move his fingers maybe?) 'there maybe small but significant cognitive improvement but I am unable to quantify that' & also something like we have to try the drug to see what it does. He kind of also said without treatment CG will definitely die. If the parents were not in so much grief & denial they probably would have been able to read between the lines and say 'we are not letting our terminally ill child be your Guinea pig'- no one including this US expert really knows what this drug will do in Charlie's rare MDDS

I don't think you can tell much about his head from that angle it's an odd angle but he doesn't look a well boy - his poor swollen body!