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.

The parents are winning no affection from me with their antics. Their son is suffering.

I hope all the bottom feeders bandwagon jumping sheeple of Charlie's army better never have kids who need treatment from GOSH. After all , why would you put your kid in the hands of murderers?

Whilst it is desperately sad, I feel that even if he does get treatment, seeing the results of the boy in the USA that had a similar condition, he is being sentenced to zero quality of life, for life.

They even want to dictate how they say goodbye to him and to create "memories" before they let him go. Its all about them and their vision of how things should be. - fatdog

Erm yeah, selfish bastards, how dare they

So are they so far into denial that they believe this?
Or could there be an element of truth in any of it?

I find it impossible to believe GOSH and all the other doctors who have looked at this case are wrong but is parents seem so absolutely sure that they are - completely disregarding any evidence to the contrary.

www.gosh.nhs.uk/news/latest-press-releases/gosh-response-charlie-gard-high-court-ruling-today

A friend just posted this on facebook (its old though) and it basically shows that because the treatment is so experimental it had to go through an ethics committee but because he suffers from a degenerative disease by the time the decision had been made that it was possible it would no longer work.

That is the issue with the American Doctor as well presumably he saw earlier scans he is just too far gone now.

It must be hard for the parents its such a rare and complicated disease that its difficult to understand. Responsiveness is likely to mean physical responses that are instinctive rather than a deliberate motion.

The level of denial they appear to have about his condition is scary though and is only being fed through Charlies Army.

@noeuf it IS selfish when they are prolonging his suffering.

Yes I liked it on CA when they were going on about Charlie being made an American citizen by Trump. Then someone said 'oh maybe it's not the answer because what about all the future medical bills that will need paying as he gets older. He'd need to come back to the uk so it would be free.'

So it seems pick and choose as far as CA are concerned.

They genuinely believe that Doctors are purposefully falsifying medical documents and misrepresenting themselves in order to switch off Charlie's machines, they have said as much.
They have said they are reporting GOSH to the NSPCC for Child Cruelty.
They have told parents to never let their children be cared for by GOSH as they'll lose their Parental Rights.

When I wrote my thoughts on a FB article on the case, I was messaged by the parents and told not to believe everything I read, sent a picture of him with his eyes open and told to look at him, and that he is not terminally ill.

Unfortunately his parents have, it seems, in their grief lost all perspective.
If you've lost all sense of reality then your judgements are not going to made rationally.
I feel desperately sorry for their situation, but the longer this goes on, clinging onto false hope, the worse it is going to be.

Also, GOSH extending the time Charlie has, is encouraging the idiots of Charlie's Army to believe you can overturn High Court verdicts if you stamp your feet for long enough.

To think there is a child that has been living in the horrid place between life and death since October last year upsets me deeply. If you take the time to read the court judgements, you realise that GOSH applied for permission to try nucleoside therapy, to have Charlie sent to the US, consulted fully with the US and other independent Doctors and they ALL decided that he was beyond help. And that was months ago.
I stopped feeling any sympathy for his parents long ago. It's Charlie that touches my heart, he should be left to pass as nature intended back in October with peace and dignity. He was born dying, due to the horrid and cruel genetic disease.

I've had to stand behind my baby son's coffin, he was born asleep and I know only too well the pain of losing a child. I wouldn't wish it on anyone, but I also wouldn't wish the life that Charlie has on anyone either .

Can you imagine what CA will be like though if and when life support is withdrawn?
I worry for the medical staff and their safety and also the safety of their own families and children. I certainly wouldn't want to hold any responsibility in this case and i can't imagine charlie's parents will ever be in agreement with GOSH. I don't even know how they are going in there and dealing with the medical team that are caring for Charlie. A team that know his parents have been all over social media saying they are liars and murderers.

I think they'll be all noise on the Internet, Silver, but no real action. They like the security of the Internet and the sense of importance it gives them. They're not really interested in those people at all, it's all about validating themselves. They're pitiful really.

I hope so.
Everyone will be aware when it is happening though as I presume Charlie's parents will announce it on social media? Before hand?

That poor little baby boy. He is the centre of a huge circus and his best interests seem to have been forgotten by most people.

I suspect when the life support is turned off CA will spend a couple of days howling in fake grief, trying to out do each other with the supposed depths of their misery. Then they'll forget all the whole thing and go back to what bullshit they were up to online before (probably spreading anti immigration memes and getting into 'my bubz my rulz hun' arguments on Facebook). The fact that hardly any of them has actually bothered to go to the protests speaks volumes about what kind of keyboard warriors they are.

I expect the staff would be completely professional and have possibly some across parents like this before. It must be incredibly difficult for them continuing care for such a long time, knowing the situation and how poorly he really is.

I knew someone whose child had a mitochondrial disease and it wasn;t as fast as this one, it was really awful as the child goes backwardsm slowly giving up things they had once been able to do, such as coal and learn to walk. It must be incredibly hard. But perhaps that can be difficult to understand also, especially if he has been able to see to start with, and comprehend.

Who is CA? "Charlie's Army'? But who are they...

They have drummed up quite a lot of support ..... it could actually be quite useful for something else.

Grenfell Towers for example.... have they got a group like this campaigning for them?

'The parents are winning no affection from me with their antics. Their son is suffering'

That is an awful thing to say.

They don't think he is suffering and I must admit on every photo I've seen of him he certainly doesn't look distressed. Of course he can't verbalise, but he seems very peaceful so I can understand why they think he isn't in pain. Ive looked after many people on vents and distress is always evident even why they cant express things verbally.I presume the medical team will have him on strong meds anyway.

I think to take this to the courts was very wrong. To do that to grief stricken parents who have been given mixed messaged from other hcp's seems cruel imo. I understand transferring to America may not change anything but I believe it should have been allowed.

From the Appeal judgement:
Francis J heard evidence on behalf of the hospital... In addition, the judge received a substantial number of second opinions from leading authorities, in particular the following:-
Dr C, consultant in paediatric intensive care at St Mary’s Hospital, London

Dr D, consultant respiratory paediatrician at Southampton Hospital

Dr E, consultant and senior lecturer in paediatric neurology at the Newcastle-Upon-Tyne NHS Foundation Trust (described by the judge as a world expert in rare mitochondrial disorders)

Dr F, consultant paediatric neurologist at St Mary’s Hospital, London.

The parents each gave oral evidence and the judge also had evidence from a sister and a staff nurse working on the neo-natal intensive care unit at the hospital.

On the question of Charlie’s diagnosis and prognosis the experts, sadly, spoke with one voice.

So, any number of doctors (not just GOSH) are conspiring? Or maybe the doctors are right after all?

All of you saying how unfair it is on GOSH and the doctors - how do you justify that they refused parents wish to take their dying baby home????

Who does that???

The whole case is just plain wrong.The amount of power NHS has is frightening. I pray my son never needs to be admitted to a NHS hospital as it seems I will loose all parental rights when it happens. In Europe is is not uncommon AT ALL to seek second opinion and change treatment.

Asyha King is now healthy and at school..I doubt the NHS doctors that said he was too "ill to teavel" have apologised to the parents.

They were talking about the case on The Jeremy Vine Show last week. A lady phoned up to say she'd lost two daughters to genetic conditions and that she'd wanted to rail against the hospital's recommendation to switch off their life support but that family members had talked and reasoned with her and made her see it was in their best interests.

Another caller (male) stated that anyone who switches off a life support machine is a murderer

WindwardCircle agree. Also think the parents will be forgotten about once there's nothing to campaign for. In a way good as the fake grief from so many is odd but at the same time the parents will need support going forward but by then they'll all jump onto the next bandwagon

how do you justify that they refused parents wish to take their dying baby home????

It's often not possible to "take someone home to die". It was that way with my father who was on life support.

And I've no doubt the parents are considered a flight risk.

GOSH need to put an end to this one way or another once and for all. The situation is getting worse by the day it can't be allowed to keep going indefinitely