Charlie Gard- State decides or parents?

Blitzkrieg

I'm not medically qualified enough to realise that if we don't try new things we won't advance our knowledge?

Cliff

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Actually, the report on that said the Doctors and Social services  did everything right- even the international arrest warrant and incarceration.

Surprised they are not in line for an MBE

Stuey1

The parallels are pretty slim having just read what it is they are fighting, but I still don't like the idea of a court/judge deciding that someone can't go and get treatment somewhere else if the NHS feels there is nothing they can do for them.

It may fail, it may cause some unnecessary suffering but without even trying it doesn't have any chance for the ultimate aim of him to keep his life. IMO it should be his parents decision as to whether the treatment has a chance and they should be able to decide when it becomes selfish to keep him alive.

*Edit - the medical advancement point is also IMO valid

Blitzkrieg

Yep..... bonkers

Cliff

As they usually do...

The child is sick and suffering. We shoot horses. Humans, we try everything. But the real issue for me is that the child belongs to the parents not the state (although I get the feeling this has changed) . Therefore the parents- providing it is not unreasonable - should have the final say.

IronGiant

So long as you realise what is being proposed. Charlie's brain isn't just damaged, it never developed properly. This treatment might help if there was something there to mend.
It's likely that this is a wonderful opportunity to advance the treatment of mitochondrial diseases, but the chances it will help Charlie are tiny.  Charlie's parents should be made aware that they are most likely donating Charlie's living body to medical science experimental research, not for a medical treatment
Now, they may be prepared to do that, but I think they should realise their reasons for doing this are most likely for the benefit of others, not their small boy. Of course, I could be wrong, new brain tissue might grow and develop into a working brain, but the odds are very much against it.  
On balance I would let them go, but only if they realise what the likely outcome is.

Unlucky Alf

The parents should no have the final say.

They're understandably not being rational about this, and the court has to decide what's in Charlie's best interest, not theirs. He's blind, deaf, brain damaged, and will never able to survive off a ventilator. Doctors in Barcelona and even the American doctor who offered to treat Charlie have said that the proposed treatment is virtually futile. It's not been tried on anyone with his particular illness or even on mice, let alone people. Even if it did work, the best case is that he doesn't get any worse. He'll never talk, walk or see.
And the legal basis for courts making medical decisions rather than the parents is quite well established if it's decided that what the parents want is not in the child's best interests, eg Jehovah's Witness parents refusing blood transfers for their children.

Finally, I've been following the case and find the behaviour of the parents/family pretty distasteful. They've been whipping up the 'Charlie's Army' group on Facebook with the claims that GOSH is denying them justice and even that they're little better than murderers (see the pics of their protest banners at Buckingham Palace, which is supported and organised by the relatives), and of course it's now been latched onto by religious groups in the USA.

IronGiant

I believe the treatment proposed is nucleoside therapy which is used in one form of MtDNA Depletion, one caused by a lack of nucleotides, the building blocks of DNA.  From the little I can glean from the media reports I don't think this is cause of Charlie's depletion.  If anyone finds out what gene is disrupted in this family I'd be very interested.

Cliff

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I actually know parents who have a seriously disabled child and he can't speak, eat through the mouth, no muscle control and just about everything else has to be done by a carer. Now I often say to my wife, 'this is crazy'- the NHS is keeping him alive but he can't be happy (although we don't really know). The parents, of course want him alive. But it has affected their lives seriously as well.
'They should have let him die at birth'

However, I am a 3rd party and have no emotional connection. I am just looking at it in a matter of fact way. If it was my child I would no doubt think differently.

I don't buy the child cruelty angle. - that's just Social Services's weasel words- and it should not be their call.

In this case, the NHS will not be paying, and I believe it is the parents right to try. I don't think it will work but they will have the comfort of knowing they did everything and may help with the grieving.
I don't believe it is the duty of the state to say who lives and who dies- especially when they won't be paying.

bjd

Surely the time he was being kept alive while court cases were being fought would have been better spent letting him be taken yo the US to try whatever experimental therapy was available? The money was raised and his parents,  no matter what the outcome,  would at least have felt they had done everything they could to help him.