Charlie Gard

[ubersonic]

Of course the US doctors will now say that he could have been treated, they have nothing to lose. No one is going to call their bluff on it any more so they could promise the earth now. If only he'd had the treatment! He could have been an astronaut! The president! The 100m sprint record holder!

Guys I've seen the records now, I'm convinced I could have treated him but it's too late to have to prove that. Please put my name out there any pay me money for TV appearances.

Show some respect please.

And no they didn't start claiming it after he became too far gone, they started claiming it after they got access to the medical records and realised his brain damage had been overstated (which was sadly after the last court case), sadly in the time since then his muscle deterioration has made treatment pointless so his parents have dropped their challenge.

 

[Vonhelmet]

That's when they first started requesting it.

Ok, first up, citation. Secondly, should they have been given the treatment straight away with no regard to whether it made sense to do it? With no medical checks?

 

[ubersonic]

For anyone just coming into the thread who's bought into the nonsense that the hospital made the right call, did everything, etc. Here's some poignant excerpts from the latest press releases by his family on his condition, the cases and treatment:

The American and Italian team were still willing to treat Charlie after seeing both his recent brain MRI and EEG performed last week. He’s not brain dead (and never has been) he still responds to us, even now, but after reviewing the recent muscle MRI it was considered that Charlie’s muscles have deteriorated to the extent that it is largely irreversible and were treatment to work, his quality of life, would now not be that of one which we would want for our precious little boy.

All we wanted to do was take Charlie from one world renowned hospital to another world renowned hospital in the attempt to save his life and to be treated by the world leader in mitochondrial disease.

There is one simple reason for Charlie’s muscles deteriorating to the extent they are in now – TIME. A whole lot of wasted time. Had Charlie been given the treatment sooner he would have had had the potential to be a normal, healthy little boy. His muscles were in pretty good shape in January, although obviously weaker than a child of similar age, and his brain scan was that of a relatively normal child of his age. He may well have had some disabilities later on in life but his quality of life could have been improved greatly.

The reason that treatment was not commenced in January or April this year, was that Charlie was found to have ‘irreversible brain damage’ and treatment was considered as ‘futile’.

Dr Hirano and Dr Bertini, together with other internationally renowned paediatric neurologists have now reviewed Charlie’s MRI’s and EEG’s which were performed in January and April respectively and they have confirmed that these MRI’s and EEG’s showed NO actual evidence of irreversible brain damage. Unfortunately Professor Hirano did not have access to the raw data and he based what he said in April on reports. We did not have access to these second opinions before the initial trial, hence why we are where we are today. Had we had the opportunity to have raw data of the MRIs and EEGs independently reviewed, we are convinced Charlie would be on treatment now and improving all the time.

However, we are now in July and our poor boy has been left to just lie in hospital for months without any treatment whilst lengthy court battles have been fought. We have been told time and time again that Charlie has a ‘progressive disease’ but rather than allow treatment for him with a medication that was widely accepted to have no side effects, Charlie has been left with his illness to deteriorate, sadly, to the point of no return.

Our doctors in America and Italy were still willing to treat Charlie after reviewing the MRI head scan from July 2017 as they still felt that there was a chance of meaningful improvement in Charlie’s brain. However due to the deterioration in his muscles, there is now no way back for Charlie. Time that has been wasted. It is time, that has sadly gone against him.

We now have 7 experts supporting therapy for Charlie’s condition which I think is proof that it was more than reasonable to try it. Nucleosides are simply a powder that would’ve gone into Charlie’s milk and are compounds which all of us in this room produce naturally. Unfortunately, Charlie can’t produce these due to his disease, which is why he is the way he is. We want people to realise that we have been speaking to parents whose children were just like Charlie before starting treatment and now some of them are walking around like normal children. We wanted Charlie to have that chance too.

Our son has an extremely rare disease for which there is no accepted cure but that does not mean that this treatment would not have worked, and it certainly does not mean that this shouldn’t have been tried. We have only been asking for a 3 month trial of treatment to see if there was any improvement. We have been asking for this short trial for the past 8 months. Charlie did have a real chance of getting better if only therapy was started sooner. It was never false hope as confirmed by many experts.

 

[Vonhelmet]

Accordingly, Charlie's information was conveyed to Dr. I electronically and the same day, 30th December 2016, Dr. I and Professor A spoke. This was an unofficial conversation and there is no record of it, but Professor A indicated that Dr. I agreed during this conversation that the therapy was unlikely to help Charlie's severe neurological disease.

So at absolute worst it was 7 months ago, but even then the doctor said it probably wouldn't work.

 

[Vonhelmet]

Oh, so the 8 months is from their own statement. So they can't medicine, they can't law, and it turns out they can't even count.

 

[Caged]

Show some respect please.

To whom? I am not showing respect to your misrepresentation of the known facts about this, that's true - but I'm not going to either.

 

[ubersonic]

To whom?

We're talking about a dying child and you're cracking jokes about the doctors who tried to save him. I mean it's better than @Vonhelmet taking the mick out of his parents, but yeah.

 

[Felon]

It's interesting how the judge points out the differing culture between the UK and US philosophy around healthcare, where US doctors will throw everything at a problem so long as theres money, rather than simply letting nature take it's inevitable course.

Professor A was also cross examined about the prospect of successful nucleoside treatment. She pointed out, as I have already recorded in this judgment, that this treatment has never been tried on humans or even on animals, not even mice which have this condition, namely RRM2B. She pointed out that there is no evidence in humans that the drugs could cross the blood/brain barrier. She also pointed out that the evidence being used by Dr. I was in relation to patients with TK2 not RRM2B.

Crucially, she said that, even if there was an ability to cross the blood/brain barrier, it is not possible to reverse the process for neurones already lost. She said that seizures in mitochondrial disease are a sign that death is, at most, six to nine months away. She said that she and Dr. I did not really differ on the science and both agree that, very sadly, it is extremely unlikely to help Charlie. She said that, in her view, there was a cultural difference in philosophy between treatment in the United States and in the United Kingdom. She said that she tried to have the child at the centre of her actions and thoughts whereas in the United States, provided there is funding, they will try anything.

 

[Vonhelmet]

If they're going to call the lawyers evil and try to bring the press to leash in such a way that people are threatening the hospital, then yeah, I'll call them out on all their misguided behaviour.

 

[Caged]

We're talking about a dying child and you're cracking jokes about the doctors who tried to save him. I mean it's better than @Vonhelmet taking the mick out of his parents, but yeah.

No, I'm making a joke about the charlatans who attempted to make themselves richer by taking advantage of grieving parents.

 

[Vonhelmet]

And yes, that too, I'm definitely deriding the doctors claiming they could have cured him now that there's no chance for them to prove those claims.

 

[Minstadave]

For anyone just coming into the thread who's bought into the nonsense that the hospital made the right call, did everything, etc. Here's some poignant excerpts from the latest press releases by his family on his condition, the cases and treatment:

I'm sorry but much of what the parents have put into that statement is delusional. The fact you're only source is the parents' press releases is telling.

"A chance of meaningful improvement in Charlie’s brain" and if I remember rightly that was only a 10% chance guessed by the American neurologist suddenly became "he may well have had some disabilities later on in life but his quality of life could have been improved greatly".

Also "Charlie did have a real chance of getting better if only therapy was started sooner. It was never false hope as confirmed by many experts." isn't born out in any evidence.

This just seems to be the pre-amble to them suing GOSH.

 

[robfosters]

Now the lawyers starting up again, saying that GOSH are putting obstacles in the way of Charlie being allowed home to die.

Im sure any obstacles being put up are being put up in the interests of Charlie.

If they sue GOSH then that is a horrible smack in the face to the people who tried to do the best for the poor lad. Hope the judge throws it out.

 

[Minstadave]

Another example of the family's story not meeting reality.

"Parents want him home" is actually parents want him home for a few days. Now this is a ventilated toddler who will need a ventilator, gas cylinders, suction, whatever other equipment he needs, drugs, nursing staff plus medical staff to be present if needed. He can't just be dropped off in a taxi.

GOSH have offered mediation to resolve the issue but this was declined.

 

[robfosters]

Another example of the story not meeting reality.

"Parents want him home" is actually parents want him home for a few days. Now this is a ventilated toddler who will need a ventilator, gas cylinders, suction, whatever other equipment he needs, nursing staff plus medical staff to be present if needed. He can't just be dropped off in a taxi.

Yeah that's the hospitals argument. They're saying they want be able to grant the parents wishes but there are practical difficulties in doing so.

 

[Minstadave]

I feel very sorry for the GOSH team, this won't end when Charlie dies either.

 

[StriderX]

Hopefully the judge finds them in contempt if they keep agitating.

 

[Dunks]

For anyone just coming into the thread who's bought into the nonsense that the hospital made the right call, did everything, etc. Here's some poignant excerpts from the latest press releases by his family on his condition, the cases and treatment:


The American and Italian team were still willing to treat Charlie after seeing both his recent brain MRI and EEG performed last week. He’s not brain dead (and never has been) he still responds to us, even now, but after reviewing the recent muscle MRI it was considered that Charlie’s muscles have deteriorated to the extent that it is largely irreversible and were treatment to work, his quality of life, would now not be that of one which we would want for our precious little boy.

So is he brain dead or not? Everything I read seems to state that he's brain dead, but apparently he responds to his parents?

 

[Tosno]

So is he brain dead or not? Everything I read seems to state that he's brain dead, but apparently he responds to his parents?

An expert (armchair) in his condition here, told me a few weeks ago that he is already brain dead, so it must be true.

 

[Dunks]

An expert (armchair) in his condition here, told me a few weeks ago that he is already brain dead, so it must be true.

Maybe I'm getting confused with brain damage, and not being brain dead.