Charlie gard case thread 2

[Fancythat69]

The last thread is full, Not sure if another has been started.

Theres a CA rally at GOSH planned for tomorrow. What are these people on?

'The real "Charlie's Army" are the team of medical professionals who have cared for him for the last 10 months.'

Whoever said that, I agree 100%. The parents are delusional. Do they think that if Charlie has the treatment in question they will be taking him home and living a 'normal' life like taking him out in the buggy for walks, going to nursery, mainstream school etc and he will be like any other healthy baby?

It's a dreadful thing to say but the best thing for this poor baby would be if he passed away peacefully in his sleep

I remember a case in the past where the parents fought for the right of their child to be treated.
It was a few years ago now but eventually the parents couldn't cope and the child was placed in care while they swanned off to start a new family.
Now the point of law needed discussion at that time . But having fought the hospital and the law all that time you would think they would have at least continued to care for their child. But no...having done all this they eventually walked away because babies don't stay that size forever. They get older, heavier and harder to manage

Charlie's parents will likely do the same IF he is even capable of living without machinery. He wont stay this size forever

@notarehersal very powerful post

The US citizen argument is moot.

Charlie can't be removed from GOSH (whatever citizenship he holds) due to the court order.

This would need to be overturned in the ruling tomorrow on the basis of the claims of the new evidence.

The new evidence as I understand it, only relates to the chances of the treatment being able to pass through the blood/brain barrier.

Even if that is upheld, the crux of the argument remains the extent of Charlie's brain damage. There is no point prolonging life and engaging in this treatment of Charlie's overall condition remains untenable.

His parents speaking today, stated unequivocally that he does not have catastrophic brain damage. If they believe this, then understandably pursuing the treatment is logical.

However all the medical professionals who have assessed Charlie and accessed all the medical data believe is brain damage is extensive and irreversible. Thus the ability of the treatment to pass through the BBB is irrelevant to facilitating a positive prognosis.

I've just seen the 'rally' on BBC News channel. The woman who came over from the US with the pastor has said tomorrow in court is a preliminary hearing, with another hearing on Thursday

sauvignonismydrug

@Alfie

Charlotte Wyatt.

Slightly different scenario to Charlie as the hospital wanted to apply a DNR in her case and the parents took it to court.

www.telegraph.co.uk/news/uknews/1537483/Christmas-with-foster-parents-for-Charlotte.html

how horrid making your child live like thatg only to abandon her

It's all very odd. On the BBC stills (on the Mail website) it says 'terminally ill Charlie Gard' but his parents keep saying he deserves a 'chance' of 'treatment' (what would be the result?) and that he isn't brain damaged beyond repair, and that the treatment may help his brain damage. All this seems to contradict everything that was said in the original trial judgments. I do not envy the judge sorting through this evidence.

Tits out for Charlie I despair. This is a circus. I'm disgusted

I've just watched a clip on BBC news of Chris and Connie speaking to the press earlier. Chris actually says (I'm paraphrasing) that GOSH is a fantastic hospital and does many great things but they simply want to love Charlie to a hospital that specialises in his specific condition. I wonder if CA will pick up on this comment

I just saw them too. They really don't believe he has "catastrophic brain damage"

Have the Drs stated that he does?

My understanding is that GOSH is one of the few UK hospitals with specialists in mitochondrial disease.

What they are not, is "specialists" in nucleoside therapy simply as it's so new and experimental.

It's the blurring of issues in statements being made that are so unhelpful as it implies Charlie's care has been in some way sub-standard and provided by a hospital ill equipped to deal with his condition - when this is not the case.

I remember Charlotte. Wonder how she is now?

I thought the parents spoke well, they are entitled to protest and have their opinions heard. Hopefully after tomorrow's hearing they will accept whatever decision is reached. If it is not the outcome they want I hope the people supporting them speak up and help them accept it.

I think Charlie's parents have been very badly let down by their nearest and dearest tbh.

I think I'd be like them, I'd be clinging to every and any little angle of hope.

That's when your family and friends have to help you out. In my family recently when someone passed away very young their heartbroken other half almost made a horrific decision late on. We all knew what they wanted, both of them, and kindly and carefully said to them "are you sure? Remember you said?" and we looked after them when they weren't really capable of looking after themselves due to the grief.

That, imo, is where this case has gone wrong. When your world goes to shit you need the people around you to look after you. Their world has gone to shit and the people around them are encouraging/helping/organising turning them into a crusade.

Yes, GOSH has mitochondrial experts, as does the Evelina (London's other, often ignored, world class children's hospital). The leading mito centre in the U.K., if these things can be judged so crudely, is probably Newcastle, but they supported GOSH's judgement in court with their expert witness, and have been involved in decision making too, from what I can see.

@StiffyByng

Thanks for the clarification

I have just seen the picture of the family with the American pastor at Charlie's bedside and have to say the child does not look well
Can I ask, the courts ruled that the life support could be switched off and Charlie could have palliative care only, have the parents refused to let GOSH disconnect the life support equipment?

Nan it''s unclear whether this has happened. GOSH gave the family more time with their son and now new evidence has been presented about a treatment, so until tomorrow's hearing no one can comment any further really. People can read between the lines but it is not factual.

Thank you

have the parents refused to let GOSH disconnect the life support equipment?

Life support was supposed to be switched off on 30th June The parents begged for extra time to say goodbye which was granted. Then this new information came out last week and GOSH decided to take it back to court.

I was with a member of my immediate family (not a small child) when life support was switched off. It was heartbreaking but the climax of a stressful period after an accident where the person suffered horrific life changing injuries. I eventually came to realise that as much as I wanted them to survive, I wanted them to survive because that was what was best for me. But it was no longer the best outcome for them. It took me time to make that emotional switch and realise that I was putting my own needs first; once I reached that point although it was emotionally distressing i knew it was the right thing to do.

Charlie's parents don't seem to have reached that point. I'm finding this case very difficult and distressing and worried for the medical staff involved. In my experience in a situation like this they were exceptional in their care and sensitivity both for the patient and the family dealing with the situation.

I hope that for poor little Charlie's sake that he slips away with minimal suffering.

It's quite possible Connie and Chris will never allow the ventilator to be switched of which could mean the police having to remove them from the hospital while it happens. With some protesters outside screaming murder's at the hospital.

No know side effects and nothing to lose. ?! [connie]

It's not known because it's not tested and surely her son's dignity and right to a relatively pain free death is a lot to lose :(