Charlie Gard case

[LovelyBath77]

AIBU to feel the drama over this poor little boy is not helpful? I read the Pope and Donald Trump were suggesting they help- when several courts have agreed it is in his best interests to let the little boy die with dignity. I feel sorry for him as he may be in pain and it is unfair to add further to false hope for the parents as well. I also feel that many, many people has awful situations where babies die, sadly, for example stillbirths and other cases which are just un-heard and un-noticed and people have to deal with it, so why is there such a huge focus here.

I was in Liverpool yesterday, and although there was a newspaper report of "over 100" at a protest, I only saw two doing a spot of shopping afterwards. I think the figures might have been an overestimate.

Following on from her appearance on the GMB sofa this morning, just over an hour ago, both parents were pictured being interviewed by Nigel Farage for LBC radio (although I think only mum did the talking). It included this message for Theresa May.

"I'm pleading with you as the Prime Minister of our country to help one of your citizens and to support us like others are supporting us."

So, have neither parent been with Charlie all morning?

I don't understand this.

The courts ruled. GOSH gave the family a little more time to say goodbye and be with their son, but instead the family are campaigning. I saw that video last week of the parents begging and pleading for more time, it was heartbreaking. But I did not expect this.

I have a feeling that this announcement today will not be something that's in charlies best interests. Something is telling me that since this has blown up over the last few days, the parents are going to be given what they want

And if so, Jon, that is setting a VERY dangerous precedent.

Connie this morning: We are not bad parents, we are there for him all the time, we are completely devoted to him and he's not in pain and suffering"

Not this morning you weren't. And yes, he is suffering.

I have a feeling that this announcement today will not be something that's in charlies best interests.

But the GOSH motto is:
"The Child first and always."

there are some vile uneducated posts on this thread, calling disabled people "vegetables" I mean seriously WTF

If it's true he has a 10% chance then surely that's in his best interests?

JonSnow sadly I agree with you.

And unfortunately, I still think GOSH would come off badly to Charlie's Parents and the Armchair Army.

Because when this treatment doesn't improve Charlie's quality of life, it'll be GOSHs fault "for not agreeing to it sooner".

Total That's a very big IF. I'm sure GOSH and the courts would want to see proof before even considering it.

If he had a 10% chance with this treatment he'd have had the treatment already.

What can the hospital do? The world and his wife are watching and holding their breath. I think they might have to succumb to the pressure and yes that would certainly set a precedecent.

Total from what I understand, the 10% chance, if true, is to make his condition better. You cannot reverse his brain damage no matter what happens to his mitochondrial disease. That is where the argument is I think.

I hope so Ellie, but then I don't think the NHS has had to deal with such a massive case before so who knows what will happen.

Part of me feels awful for feeling this way, like I'm willing this child to die, but I have to remind myself that's not the case & of course we'd all love him to survive & lead a happier life if he could

I can understand how the parents feel, and I feel desperately sorry for them.

I'm also conscious of wanting to respect their knowledge of their son and right to choose as his parents. Switching off life support is usually only done with the consent of the next of kin, and it's true that Charlie can't communicate so nobody really knows if he is in pain or not. Also true that medical professionals don't necessarily know everything (especially about something this rare) and there are a lot of unknowns.

A friend of our family came out of a nine - month coma that doctors said he would never come out of. They'd wanted to switch of life support - but obviously his parents were desperately relieved they hadn't. And the predicted brain damage was present, but significantly less severe than they'd said it would be - he'd had a bad motorbike crash - and this person now functions as an independent adult, with problems mostly limited to memory and language.

Surely precisely because of the way things have gone, with parents refusing to accept not only a High Court decision but also those of the Court of Appeal, the Supreme Court and the ECHR, the pressure is on to carry on as planned.

I find it interesting that i have not seen any genuine experts in this field of medicine speaking out in favour of Charlie receiving treatment.
Surely if there is a genuine 10% chance of any significant improvement with treatment they would be shouting from the roof tops. Yet it's taken pressure from social media for these experts to come forward and present their case for treatment.
I do hope not, but the term 'quacks' come to mind regarding the newly discovered specialists giving his parents even a glimmer of hope that their child may fully recover.
And as a PP said, it appears that more people have been treated than have ever been diagnosed with Charlie's particular condition.
Sadly I think the outcome of today's meeting will not deliver the panacea that his parents are hoping for.
I'm another who fears the precedent that would be set if GOSH are forced to back track purely due to non medical pressures

Not How many doctors had said this friend would not come out of a coma? I'm not for one moment saying doctors are infallible but the number of doctors and experts who have said there is no hope for Charlie whatsoever and that even if he had this supposed experimental treatment he won't be cured, merely live a little longer, is a significant number.

'Grabby seems perfectly appropriate to me. '
Yes we'll CA think calling gosh names is perfectly appropriate too.

Can we stop talking about the money? We have no idea what they will do will it, I've heard they will donate or set up a trust to help others so let's wait and see. The merchandise is ill advised but still it will be to keep the case high profile not for the 'earnings'.

Removing respiratory support from a brain damaged patient should imo be done with consent. Gosh have handled this badly though I agree his diagnosis isn't compatible with any quality of life.

How CA and those on here verbalise their thoughts and opinions are both equally as agressive and offensive.

I respectfully disagree with you Myrtle that GOSH have handled this badly.

You cannot reverse his brain damage no matter what happens to his mitochondrial disease.

My understanding is that they are referring to his encephalitis?

My sister had severe encephalopathy with very poor prognosis and is fine.

They don't always get it right!

Maud, I think we are agreeing with each other?

It is extremely difficult to withdraw life support once started.

The decision whether to withdraw active treatment (or for that matter whether to formalise a DNACPR order in adults) is a medical decision, not the parents' (and not the patient's or relative's). These decisions are only ever reached after multidisciplinary discussions, often over a period of time and, ideally, with a good understanding and agreement from all parties involved, but it remains a medical decision.

IMO and IME no relative should ever feel that the burden of making these decisions is on them. I think communication around these difficult issues is often difficult, poor and too distressing - many excellent doctors are rubbish at communicating (whether that still makes them 'excellent' is another question but for another thread) and many distressed relatives are not in a position to take everything in, to remain rational and make a decision that may be right but too painful to contemplate.
It's decisions like these that HCP take home and that stay with them for a long time.

How CA and those on here verbalise their thoughts and opinions are both equally as agressive and offensive

I can't agree with that, having followed the campaign for some time, I have seen threats to kill, abuse at newly bereaved parents who bravely posted on the page that they disagreed and vile language about GOSH staff.

I don't agree that life support should be continued indefinitely depending on the relatives wishes. The patient must always come first.

It's also a tough subject to broach but many people have died while waiting for an ITU bed or surgery that requires recovery in ITU, lets not forget them in all of this.

What I would love to know (even though it is none of my business) is where and when the relationship with GOSH and Charlie's parents went quite so wrong - it has blown up in the media in recent weeks and days, but clearly something dysfunctional must have happened to set it all off

There are other critically ill and dying babies and children in the country who are not getting this kind of media attention