Active discussions

Meet the Other Phone. A phone that grows with your child.

Meet the Other Phone.
A phone that grows with your child.

Buy now

Please or to access all these features

Talk
AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

Charlie Gard 8

999 replies

cjt110 · 14/07/2017 11:49

New thread so that we can await this afternoon's hearing at 1400 (UK time)

Let's try to keep this one as sensible and measured as the past 7 threads have been.

Please note the MNHQ comment on thread number 7.

"Hi everyone,

..... We had to remove several parent-blaming posts, so we'd like to ask folk not to do this. We think we can all agree that this is a truly awful time for all involved and we just wouldn't wish it on anyone. If there's anything we could do with more of, it's support. We'll continue to remove reported posts that break TGs (if we've missed something, do feel free to let us know).

If we have to make too many deletions, we will need to look at removing the thread; which is the last thing we wish to do.

Thanks all"

OP posts:
stealtheatingtunnocks · 14/07/2017 18:36

poor wee baby. He needs to be with his parents, who are not able to spend their time with him.

This is time his family cannot get back. It's so very sad.

Ellie56 · 14/07/2017 18:41

I think I would feel like wantingto speak in super clinical jargon if I was one of the GOSH doctors in that meeting.

MyPatronusIsAUnicorn · 14/07/2017 18:44

.

originalbiglymavis · 14/07/2017 18:49

I'm wondering who is with that poor child when the patents are in court.

Why has the dad got Charlie's little monkey with him - it's his comforter surely, why take it off him?

I'm getting uneasy about the barmy army turning tides on the parents: if they end up being convinced by medical evidence and agree to switch off life support (they will be murderers), or if he dies after treatment and any pm report shows that the child had been suffering prolonged agonies with no hope of any improvement (let alone riding a bike and going to school) and was essentially a guinea pig (ie heartless, evil...).

There will be Facebook style pitchfork waving either way.

Puzzledandpissedoff · 14/07/2017 18:49

I don't think it was a fear of being sued Puzzled, because there just is no grounds for a claim, and GOSH will know that

At one time I'd have agreed, but given how this is being handled I'm not so sure any more. I'm no lawyer, but can't help wondering just how far the concessions to the parents would have been allowed to go, and what effect this might have had on the verdict, had they brought a case against GOSH

Of course it may be that the threatened judicial review had nothing to do with it, and that GOSH brought this back to court out of a genuine desire to be seen to consider every suggestion - no matter how unrealistic - from the parents

In which case, a fat lot of thanks it's brought them Hmm

SimplyNigella · 14/07/2017 18:50

I can understand why Connie wants to be there, what I would be interested in is whether the medical team alter the language they use in the meeting to put things into layman's terms and pause to explain things to her, or whether they will carry on regardless.

The idea of parental choice over treatment is an interesting one. In DS's case we were given a very big choice on the day of his cancer diagnosis- surgery with a 20% chance of subsequently needing chemo or chemo with a 50-60% chance of subsequently needing surgery. The cure rate was 98% whichever way, but each treatment route came with its own risks and consequences.

I understand why they gave us the choice as from a clinical perspective either route had the same likelihood of overall success, however with hindsight I wish we hadn't had that choice as we still feel the burden of the responsibility of taking that decision and will always wonder whether we made the right one. Our consultant told us he was glad we made the choice we did, and I believe him, but still in many ways I wanted to doctors to take control and tell us rather than ask.

I do understand that this is a very different situation to Charlie's and I probably wouldn't feel the same in C&C's position, but from a wider perspective it's an interesting debate.

HerculesMulligan · 14/07/2017 18:52

"I'm wondering who is with that poor child when the parents are in court."

My understanding is that it's often Connie's mum.

Ellie56 · 14/07/2017 18:53

I'm sure I read somewhere that Charlie has 2 of those little monkeys.

BoreOfWhabylon · 14/07/2017 18:54

Rhubarbginisnotasin the doctor is not a 'so-called expert' he really is an expert, at the top of his profession. He's not some shonky snake-oil merchant. It is very unusual for someone like him to fly thousands of miles at very short notice to give his clinical opinion like this.

I really think he too has Charlie's best interests at heart.

Rhubarbginisnotasin · 14/07/2017 18:59

He's not some shonky snake-oil merchan.

I never for a minute thought he was.

But to be quite frank his hand has been forced and I think its a move for the better.

Butterymuffin · 14/07/2017 19:01

There also seemed to be a suggestion that she has been the one researching Charlie's condition herself and therefore with the (relatively) high level of knowledge. Not Chris.

Fishbiscuits · 14/07/2017 19:01

if he dies after treatment and any pm report shows that the child had been suffering prolonged agonies with no hope of any improvement (let alone riding a bike and going to school) and was essentially a guinea pig (ie heartless, evil...).

I wouldn't worry about CA turning on the parents if that happens, more likely they'll say GOSH have murdered him and that whoever does the post mortem has been paid to lie and keep it quiet

Fishbiscuits · 14/07/2017 19:03

GOSH have had him murdered, sorry. I really think a lot of them would believe the most far fetched conspiracy stories rather than admit they were ever wrong.

BoreOfWhabylon · 14/07/2017 19:05

Sorry, I know you didn't use those words but others have a couple of times on these threads.

I agree, his hand was forced a bit, but to give him his due, he agreed to come (and I imagine he's a guy with a very full diary)

smilingmind · 14/07/2017 19:05

I think the point of the US doctor being threatened with litigation is a very good one.
With the parents, the pro life religious loonies and trump likely to kick off if the treatment doesn't go as expected he could be taking a big risk.
I wonder how aware of all this he is. Possibly not very as he hadn't even read the previous court rulings.
Maybe someone should send him a link to CA although, as his information is now public, it is entirely possible they are mail bombing him.

Ta1kinPeace · 14/07/2017 19:08

Deux
I know a man who mends ventilators and his sense of humour is very warped. I bet that actually cheered the nurses up ...

Ta1kinPeace · 14/07/2017 19:12

smiling
He works at Columbia in New York.

I'd be gobsmacked if he has not been in touch with GOSH over the years on many issues - there are only so many centres of excellence on Mito diseases (Rome not being one BTW) and GOSH and Birmingham are the UK sites likely to end up treating most such kids.

Chances are that Connie is in for rather a rough ride when she realises that he reads the notes like we do a newspaper and he realises that there is no good news coming out of this case.

GabsAlot · 14/07/2017 19:15

do we know how many specialists are at this meeting

i know of the us exprt and the italian but are the rest from gosh or elsewhere

CaveMum · 14/07/2017 19:16

GOSH are damned (in the eyes of the family and CA) whatever happens:

A) He has the treatment and there's some improvement - "See GOSH know nothing."
B) He has the treatment and it fails - "GOSH should have let him have it sooner, then he'd still be alive."
C) The treatment is not allowed - "GOSH have murdered him by switching off the life support."

There are no winners in this case, whatever the outcome.

Ta1kinPeace · 14/07/2017 19:17

I'm wondering who is with that poor child when the parents are in court
(a) nurses
(b) he is utterly oblivious - he could never hear, his sight never developed, his eyes only open if somebody opens them for him, he cannot move. He has lived in hospitals most of his life.

Lightlovelife · 14/07/2017 19:21

Italian doctor's mobile will be out of charge by now Grin I am quite sad we won't actually see him. I would imagine the experts will fly in and fly out as quickly as possible.

goodbyestranger · 14/07/2017 19:21

Puzzled I was referring to there being no grounds for suing for damages as opposed to asking for judicial review.

BeefyCakes · 14/07/2017 19:23

I think the judge has made an error in not ordering fresh tests.

The parents are nor allowing them, and to me that speaks volumes.

Ta1kinPeace · 14/07/2017 19:28

I think the judge has made an error in not ordering fresh tests.
Tests of what ?
For what?
At what risk?

MRI does not show whether cells work, just that they are there (see past posts by LonelyMummy on the issue)
Xray is radiation for what purpose
Blood tests will just confirm what is already known

Any sort of moving him from that bed / adjusting the ventilator has a risk.

muckypup73 · 14/07/2017 19:28

BeefyCakes, how does it speak volumes? I really do not belive this child will be having the treatment, I would put every penny I have on it.