Charlie Gard

[Noivous]

Let me ask my British friends. Am I to understand the NHS won't allow The Gard's to bring their terminally ill son to the US for alternative treatment even if it is privately funded?

N.

[MyNameIsTerry]

It's about allowing him to die as the court accepted prolonging his life could make him suffer more. And the US treatment was stated as only helping him temporarily, not as a cure.

The hospital just applied to overrule the parents via the correct legal means and then it's up to a judge to decide.

---------- Post added at 06:34 ---------- Previous post was at 03:50 ----------

This article explains the case and how it's gone through all of our courts (High Court, Court of Appeal, Supreme Court):

https://www.theguardian.com/us-news/2017/jul/03/donald-trump-offers-help-for-terminally-ill-baby-charlie-gard

They tried the ECHR but got nowhere. Right or wrong in this case, the ECHR stance feels a letdown when they intervene on behalf of people who have committed crimes.

Utterly ridiculous the Vatican offering to move him from a top hospital known around the world to what they were offering knowing the place is under investigation for poor standards.

[mezzaninedoor]

I think the problems are that these cases are always unique.
You have to hope, and generally it is the case, that the medical professionals are working absolutely for the ultimate benefit and quality of life of the patient.
Children with major conditions are almost always being treated by specialist hospitals and doctors, surgeons and with my wife working in the NHS Im willing to believe that the experts have Charlies best interests at heart.

[Carrie8484]

Let me ask my British friends. Am I to understand the NHS won't allow The Gard's to bring their terminally ill son to the US for alternative treatment even if it is privately funded?

N.

It isn't as clear cut as that. The little boy is on life support and is blind and deaf, cannot breathe for himself and has substantial and progressive brain damage.
The parents wanted to take him to America for experimental treatment but the Doctor in the US has said he did not realise the extent of the little boy's illness when he offered to treat him. That being said the parents are rightly distraught that the courts have ruled against them as they have campaigned tirelessly but they also have what appears a clouded judgement. Transporting a severely poorly little boy on a 9 hour flight would not be advised either . the ruling was made for the life support was to be switched off. However there has now been intervention from Trump and The Pope so currently there is no new news.
You have to feel for the parents but wonder what is best for the little boy.

[.Poppy.]

Transporting a severely poorly little boy on a 9 hour flight would not be advised either.

Yes, I read that the parents were also wanting to bring him home to die, but that there were serious doubts that he could even make it that far before passing away.

Unfortunately, he'd likely die before he made it anywhere near the US.

[MyNameIsTerry]

They argued that the hospital are preventing them choosing where he dies. If the patient is too ill, they always do that. We've never had that right.

Whilst Trump wants to help it puts the government in a difficult position. If they override the court they will set a precedent, do they even have the means? And I wonder if we would see human rights groups complaining? I expect either way the government go, there will be an element in our current climate who will use it in their campaigns to remove them just as they have Grenfell.

[pulisa]

Without a life support system the poor little boy would die. It's a tragic situation but a hospital like Great Ormond Street wouldn't make a mistake regarding the prognosis of a severely brain damaged baby who is totally reliant on machines to "live". The parents obviously can't see this and don't want to. In my view it doesn't help matters when people like Trump step in when they don't know what they are talking about.

I have spent many months in Great Ormond Street with my son when he was born and I have every faith in their judgement. There is a lot which we probably don't know and shouldn't know.

[MyNameIsTerry]

The US professor has been invited to see Charlie now before the judge rules:

http://www.mirror.co.uk/news/uk-news/im-confident-can-improve-charlie-10794025

GOSH make an important statement about duty of care to the patient there. In another case we could be talking about parents refusing treatment due to religious beliefs and the public would be firmly against them and approve of court involvement.

I disagree with parents only having a say, sometimes they get it wrong and the NHS have to ensure the patient's rights. It's not the only scenario in which the child has their rights protected by courts against their parents.

If this professor can pull it off will this mean the poor child is heavily disabled?

Sadly the loons are also out trolling the hospital. They show themselves as the vile ones when compared to the amazing work GOSH do. The staff there have always seemed amazing from documentaries and pulisa has personal experience of how committed they are. I bet there are many very grateful parents out there who have been helped by them or had the best of care even if it wasn't to be.

My family of experience of Birmingham Children's Hospital and they were amazing in saving my cousin when he was moved there from the local intensive care ward.

Hopefully they will be prosecuted and named.

[pulisa]

I agree, Terry. This whole awful situation is just a vile media circus. In my opinion the parents should be at their terminally ill son's bedside not in front of the cameras. Every day is precious for him now. There will always be "treatment" if there is money available..

[MyNameIsTerry]

Your right pulisa and you would know better than most from your experience. They must be torn between both and now it's because a circus their time is being demanded to up their profile, which must be tempting for them?

I wonder about this professor though. Doctors are usually careful in making claims without seeing patients and I hope this isn't false hope. I just can't see a top hospital with the best paediatricians in the country being wrong about this when they move mountains for their patients everyday.

This professor needs to be a lot clearer about what Charlie could be like afterwards. There should be a question over what his quality of life will be like. Sometimes is kinder to let go than have a life a pain.

[mezzaninedoor]

I agree, Terry. This whole awful situation is just a vile media circus. In my opinion the parents should be at their terminally ill son's bedside not in front of the cameras. Every day is precious for him now. There will always be "treatment" if there is money available..

Agree.
GOSH will know exactly what they are doing and will be putting the patient first, at the front of everything they do.

[pulisa]

I can't stand how this situation is degenerating now. It should be all about dignity for that poor little terminally ill boy and not about the parents and their team of crocodile tear shedding hangers-on. As for GOSH getting targeted by vile people who have nothing better to do..I suggest they take a walk down the hospital corridors and see for themselves just what wonderful work the doctors do on children facing tremendously complex illnesses and conditions but then they aren't really interested in that side of things..

I truly fear for that poor little boy who is just being used as a pawn in all this. I know we live in a facebook and twitter orientated world now but this is too much, surely?

[Phuzella]

Agreed pulisa

[MyNameIsTerry]

I agree with you, pulisa.

The mother saying she measured his head and found growth yet the highly trained staff didn't smacks of trying to influence the courts into retrying the case. That and the so called new evidence of the possibility of success by a doctor who had never even examined him.

They have now withdrawn their case and stated the window of opportunity is over. That sounds suspiciously like trying to blame GOSH for blocking them and I guess after Charlie passes we may yet see action against the hospital again?

Now it's too late. The US doctor hasn't been called to give evidence yet. I find this questionable given they have fought GOSH despite the consistency of their message that experimental treatment can't help. And they are stating trying now would prolong his suffering yet that was what GOSH have been saying themselves. This sounds like more lawyer speak to me.

They have my sympathy for their terrible situation.

[pulisa]

It seems to me as if the lawyers have been instrumental in this terrible situation, coaching vulnerable, easily-led parents into believing that they could take on medical expertise at its highest possible level by playing the "don't kill our baby" card and stirring up the general public into a state of near hysteria as to the gross injustice of it all... The lawyers will just be interested in the money they can make out of this and I just hope that Charlie's parents don't cash in on their son's plight financially after he passes away..

Parents who have been through the trauma and grief of similar situations will be horrified and appalled by this media circus when all that really matters is that poor little boy who has suffered enough.

[Elen]

Couldn't agree more Pulisa. Its so sad and the lawyers are the only winners in the whole thing.

[MyNameIsTerry]

I would say let's hope the trolls attacking GOSH staff look at the nurses, who have volunteered to care for Charlie at the hospice in their own time, apologise for their behaviour but they won't be rational well meaning people so I won't hold my breath.

Perhaps those nurses could be paid out of the funds rather than the legal team who have no doubt milked it?

They were just waiting on a suitable doctor to volunteer as the GP who did so wasn't qualified. The Gards are complaining about that now but they surely must realise a specialised doctor is needed?

[pulisa]

I'm not sure whether they have much understanding of his condition or the level of care he needs and has needed constantly throughout his time at GOSH. I hope in time they will apologise for some of their ill-judged comments re the hospital which has been keeping their son alive and putting up with hugely adverse publicity as a result of agreeing to try to treat him against all odds. But they won't. I just hope the next stage will happen in private.

[MyNameIsTerry]

I agree with you, pulisa.

It's obviously a very emotional time for them and they must be feeling powerless for various reasons. I hope in time they can see that the hospital has done it's very best and come to accept they were only doing what they need too.

I wonder how much they have been misled by people like this US doctor? He came here and now they have completely stopped. I wonder if he oversold his treatment?

Hopefully the media are now pushed away from this by the families.

[mezzaninedoor]

Terry & Pulisa, agree with you both
Its shameful that the lawyers even thought the Parents has a case
There is so much medical precidence that has gone before with these cases and GOSH will be acknowledged as World not just UK experts

[MyNameIsTerry]

Got to agree with this piece:

http://news.sky.com/story/amp/sky-views-charlie-gard-was-exploited-10968310

And this:

http://www.independent.co.uk/voices/charlie-gard-gosh-hirano-would-he-have-survived-a7861531.html

RIP Charlie. Snuggle up to your friend and sleep.

[pulisa]

Inevitably the parents have now issued a minute by minute review of his final hours.....