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

glad shes doing ok right now rhodiolia

Charlie's mother is said to be 'expert' in her son's condition, but surely she [or anyone else starting from scratch] cannot have the deep understanding of complex biological/biochemical processes in just a few short months?

She can google all she wants and call it "research", but at the end of the day it isn't - it is reading something on the internet from a variety of sources and not having the experience to understand the basics.

I have a degree in a biochemistry related subject and a PhD in a primary care medicine related subject. I am a Professor at a good University and teach medical students. I haven't got a clue about mitochondrial diseases anymore than the Drs at GOSH and Dr Hirano would have a clue about my field of specialism.

Sostenueto hope all goes well today.

Genuine research takes a lifetime of painstaking work but here the Dr gets to take a shortcut right through living tissue. He can write papers, use the data from Charlie to do so and advance himself all whilst being paid millions of dollars to do it. It is all self aggrandising

I wouldn't quite go that far, but I agree the doctor could well have mixed motives. As mentioned before, I'm especially concerned that he was quick to produce his much-quoted stats in court, but when challenged was just as quick to admit he might have "overstated" them

That doesn't sound to me like the careful, painstaking approach I'd expect from a respected researcher; indeed, some might even feel it suggested a drive to "big up" Charlie's prospects in order to secure a very rare research subject rather than sticking to more mundane facts

I could well be wrong, though, and I guess we'll all find out more on Monday

www.everydayhero.co.uk/event/gothedistance

This has just popped up on my timeline. Reminded me of what we were saying about the practical and financial implications of having young children in hospital. I would certainly do this in Sept if I wasn't already doing the Great North Run for another charity.

He is doing well. He also has autism.

I was for the parents trying the treatment until I saw the recent pictures of poor Charlie. He is not well. It seems like it is prolonging the inevitable and I question for whose benefit the treatment would be tried.

I wouldn't wish on anybody what we went through with our son's dx (taking him to hospital appointments all across London for months, the anxiety and stress and not knowing what we were dealing with and if it could be treated) but I am so thankful for the NHS and all it stands for. We are also lucky that our son is so well.

that is good to here mito-i also question who benefits from this the spcialist who will be now known world wide for preson trying to cure this-the parents who obviously feel some sort of guilt

all of this doesnt benefit charlie who will never be cured

Re moving patients.
A friend of our recently broke her pelvis on holiday in France, and was brought back to South Africa in a Lear jet paid for by her insurance.

My dearest hope is that Charlie's parents can let him go in peace and grieve for him. In time they will hopefully have the treatment they will need to have a healthy child, using the 3 parent way to replace the problems they have with the mix of genes.

@ Dorotheabeale
**The silence from our government/politicians is equally suspicious.

It's not suspicious at all. It would be absolutely wrong, legally and constitutionally, for any politician to make any public comment while the matter is subject to the courts. I'm glad to see that no reputable British politician has been so misguide

I did not phrase it correctly - I agree it's not right for our politicians to comment on this individual case when the case is going through courts- But I was referring to slagging of the NHS by US politicians in media- Couldn't someone like Jeremey Hunt tweet a message of support for the department he heads when it is portrayed as poorly performing/let's babies die etc? It's like it would help his cause (privatisation of NHS) when NHS is discredited.

Oops I did not bold the original comment properly

Rhod thanks for the update on baby ballerina

CA post from today:
"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😕"
Clearly they have not understood the judge and the family's requests to stop bashing GOSH.
I find it breathtakingly ignorant.
Also a lot of posts saying that he looks great, has put healthy weight on and "is clearly looking at the toy".

I've seen a few posts this morning on CA where people are commenting on photos and saying how swollen and unwell he looks in a tone of acceptance. The mood on CA seems to have changed over the last few days.....their fighting spirit and misguided anger seems to have waned a little. There also seems to be more posts questioning things and members correcting other members and speaking out against all the nastiness and I wonder if they're starting to realise just how serious things are now. It just seems like the strength and passion they once had (although it was very bizarre and misguided) is starting to slip away a little.

I have however also seen comments about getting Charlie off "whatever GOSH is pumping in to him!" Do they not understand Charlie looks worse because he's deteriorating quickly, not because GOSH are trying to harm him.

I genuinely, genuinely can't believe that some posters think a whole team of doctors and nurses would purposely try and kill a baby. I just can't understand their mentality.

Couldn't someone like Jeremey Hunt tweet a message of support for the department he heads....

Actually, I'm pleased that TM seems to have put a stop to government by social media that the previous govt indulged in. If a minister wants to make a statement, the proper place to do it is the House of Commons. Tweeting about everything trivialises important issues and looks like attention seeking on the part of the tweeter. IMO, of course.

mor crap from ca thy really dont know the law

"You are wrong. This changes everything. The Judge realizes the scope of this I'm sure. It would be nearly impossible for him to pull life support. The doctors at Gosh have been neutralized. There's no way their opinion outweighs US citizenship. That's a fact."

I have every sympathy for the appalling situation C & C find themselves in. I cannot imagine what it must be like to watch your beloved only child deteriorating in front of your eyes and then to be told he has a rare disease that is incurable.

And I totally get you would be researching on the internet to find out everything you could about the condition, much the same as I did when told our son had an Autistic spectrum disorder. But even though I now know a lot about autism, I would never be so presumptuous to say I am an "expert" in the condition.

also som rally/vigil on sunday dont know if this is approvd by c and c

www.facebook.com/events/299745690489066/?acontext=%7B%22ref%22%3A%223%22%2C%22ref_newsfeed_story_type%22%3A%22regular%22%2C%22action_history%22%3A%22null%22%7D

Couldn't someone like Jeremey Hunt tweet a message of support

Jeremy Rhyming slang, he who co-authored a book including a chapter on how to privatise the NHS, he who is trying to destroy the NHS whilst smirking like a weasel in a hen house? I can think of nothing that destroys NHS morale faster than that slimy toad popping up. The only way his involvement would improve the situation for GOS would be if he turned up carrying a large box of rotten tomatoes and addled eggs, and gave them permission to chuck them at him.

Ah gabs, the fact that stating "fact" after a statement makes it a fact. Fact.
...

Gabs More disruption for GOSH and the other families there. How selfish and totally pointless.
It won't make a blind bit of difference to the judge, any more than a petition with a million signatures will.

Delurking just to say I'm actually glad the respectable bits of our government and opposition haven't waded into this. Not a fan of TM at all, but v sensible to stop this government via social media nonsense.

I can barely imagine what the parents are going through. I can understand their grief since I've lost a child, but not in these circumstances where one might be endlessly wondering "what else could I have done".

In my case there were more direct documented failures by the hospital (not GOSH) and its staff. My partner and I wanted a full investigation and wanted some changes in procedure to prevent this happening again, but I also know how many children and families are helped by this hospital and how well-meaning and hard-working most of the staff are. So even in the depths of my grief I couldn't imagine behaving like Chris and Connie. I think that's why I'm feeling a bit resentful of them for getting so much help from GOSH, from the NHS, and then whipping up an online mob against the same people in an attempt to get their way. I understand they are doing it from misguided love and grief, but I can't condone it.

I wonder how long the CA admins will leave this comment up -

"Sorry but he does not look like he's looking at this toy he has a far away look in his eyes, pictures can lie, I'm not saying it is a lie but why can't they video him when he has his eyes open and we can watch him move his eyes around when following a toy, this would be amazing to watch but I've yet to see this, is there a video of this?"

i know ellie and thy can say its official but its not really

and byond i know this is same prson stating sh knows -

" No not if he's an American citizen which he is now! That means he is now protected by American laws. The government may intervene but he now has the same rights as any American. I don't think they can force him to stay in the U.K. And i don't think they can remove his life support! Legally that is.

I saw that WeeWitch. It doesn't seem to be there now. Quelle surprise.

Thressa may did comment. But all she said she respected the courts.

Someone has suggested that poster "isn't a supporter" now