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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

Charlie Gard 9

999 replies

muckypup73 · 14/07/2017 20:53

Hi guys new thread.

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:
Thread gallery
6
Jux · 15/07/2017 16:50

1 of the 9 patients came off the vent, but the others showed improvement too, so I expect it adds up to 10.

rabbitnothare · 15/07/2017 16:52

*Today 16:23 Maudlinmaud

There is another fb page that I believe is run by the family, more balanced feedback seems to be allowed there without it being censored. By balanced read opposition

The Charlie's fight page is run by family, that up until yesterday contained the abuse and threats of violence.

Still abudive but fewer threats of violence.

redshoeblueshoe · 15/07/2017 16:55

Lovely - I would certainly not be happy about that. My heart goes out to all the families and patients at GOSH, and the staff

Writerwannabe83 · 15/07/2017 16:57

I'm actually surprised that GOSH haven't just said, "Fine, take him" and let them take Charlie to America. The stress they are under must be immense and I do wonder if some small part of the doctors do wish they could send him somewhere else. They're doing all this fighting, their reputation is under fire and for what? I have a gut feeling that the Judge is going to say Charlie should be allowed the treatment.

reallyanotherone · 15/07/2017 16:58

Someone has actually got a tattoo?

TinselTwins · 15/07/2017 17:00

This 10% chance of improvement is measured by the amount of time the trial patients reliance on a ventilator to breathe. 1 was completely weaned off the ventilator and the other 4 used it less. So basically he has a 10% chance of not needing a ventilator 24hours a day

It's a completely illogical conclusion to then say that that 10% applies to Charlie

Charlie is severely disabled and ventilated
I am not disabled, and I've been ventilated
You can be conscious, awake, communicating by writing and genstures and ventilated

What was the baseline for the 1 who was weaned off their ventilator and the 4 who used it less - were they awake, conscious, moving etc? if so, that 10% (and 50% ) bears no relation whatsoever to Charlie

Maudlinmaud · 15/07/2017 17:00

Thought so Rabbit, but I was unaware of the abuse. Have seen evidence of it on the other page but I don't look anymore. It's bad for the soul. I still can't quite believe any of this is actually happening.

GinSoakedTwitchyPony · 15/07/2017 17:03

Rhodiola
Sky News. Got it on now. The family spokesman is the one who is saying that Charlie 'is being held hostage by his doctors' and 'has been taken prisoner by the NHS and the State'. It's the same guy who spoke outside court earlier in the week, can't remember his double-barrelled surname and CBA to Google it.

I don't like Sky News very much so I'm changing channel now, if that's ok. Grin

rabbitnothare · 15/07/2017 17:04

Quite right Maudlinmaud, bloody bad for the soul Sad

rabbitnothare · 15/07/2017 17:04

GinSoakedTwitchyPony the UKIP man?

CaveMum · 15/07/2017 17:06

He's the UKIP bloke isn't he? The spokesman I mean. If there's a wagon, he'll jump on it!

BoreOfWhabylon · 15/07/2017 17:07

I just listened to Any Answers on R4

The last caller, Penny - dear god. Poor, poor woman. I can't stop crying.

Please listen - starts @ 28 min (warning VERY distressing)

www.bbc.co.uk/programmes/b08x4rwd

Maudlinmaud · 15/07/2017 17:07

Hmm Hmm I wonder how that statement will go down with the judge.
They where given polite notice not to slate the NHS and the staff at GOSH. If this isn't to the contrary I don't know what is.
Good God!

Ellie56 · 15/07/2017 17:08

I'm actually surprised that GOSH haven't just said, "Fine, take him" and let them take Charlie to America.

They would probably love to do this and get rid of the difficult parents once and for all, but they don't believe this is in Charlie's best interests. ("The child first and always")

rabbitnothare · 15/07/2017 17:08

Anyone got a link to statement please?

LetsGoFlyAKiteee · 15/07/2017 17:10

On the rolling news part just as their lawyers have said they respect the doctors treating him but parents feel they should have final say..which was known anyway

Don't know about the prisoner bit cause that is just bizarre!

AlabamaShakes · 15/07/2017 17:14

Oh FFS!

I know on the CA FB page they scream about Charlie being held hostage but now the parents and spokesman have actually released this statement.

I'm sure the Judge will be please with that!

Call me cynical, I think this is being used to deflect that issue around the MRI/evidence of brain damage etc. It's playing to the mob over parental rights, because more people seem to be up in arms about that than the actual illness of that poor baby

TinselTwins · 15/07/2017 17:15

When I came off my ventilator:
I had no brain damage
I had otherwise healthy organs
I had only been ventilated for a few hours

Just because I made a full recovery, doesn't mean that someone else who has extensive muscle and tissue and brain damage could come off theirs and be on MN the next day typing just like me!

That's just stupid!
The US doc needs to be asked more about the 1 who came off and the 4 who reduced:
Were their co-morbidities and baseline similar to charlies?
If not he should be laughed out of court with his 10% and 50%

Sandthefloor · 15/07/2017 17:15

Alfie - if that's the case then it's no big deal. I just don't understand why the parents would only now be concerned about it if it's not new. Also can anyone explain why he has never had a tracheostomy fitted? I am not paediatric trained, but an adult would never have an endotracheal tube for that length of time.

redshoeblueshoe · 15/07/2017 17:15

I currently can't get Sky News, reading this thread has made me lad I can't

GinSoakedTwitchyPony · 15/07/2017 17:15

Yes Cave the same guy.

DarthMaiden · 15/07/2017 17:16

GOSH can't send him to the US as currently stands.

The court has ruled that it's not in his best interests. If they allowed it, they would be in breech of the court order.

What would need to happen is that the determination on the 24/25th July overturns that ruling and then GOSH would be allowed to facilitate him being transferred to the care of the US hospital.

However for that to happen, the case needs to be proven that to do so is in Charlie's best interests.

LetsGoFlyAKiteee · 15/07/2017 17:16

To be honest what sort of person wants to be seen by a doctor that doesn't even show any form of positivity not even just a little bit. I always thought doctors based there jobs on the fact of miracles so why are the staff dealing with this at gosh doing everything on throwing negativity towards it

Ermmmmm what?! I'm not sure I'd want to treated by a doctor who based their job on miracles..

Rhodiolia · 15/07/2017 17:18

I reckon this "hostage" statement is what the American pro-life lawyer was hinting at on Twitter.

DarthMaiden · 15/07/2017 17:19

Just to add GOSH also can't administer nucleoside therapy even if the US shipped the drugs over again because the court has ruled that this treatment is not in Charlie's best interests.