Doctors can withdraw baby's life support

[Rhiannon]

Feeling less and less happy about how this is being conducted.

http://www.bbc.co.uk/news/uk-england-london-40552026

[floo]

I don't think this treatment is going to make any significant improvement to this child's life, as he is so severely disabled. I think it far kinder to let nature take its course.

[Rhiannon]

I'm no doctor so I can't judge. It's the ill-informed circus around it that I don't like.

[floo]

I'm no doctor so I can't judge. It's the ill-informed circus around it that I don't like.

I agree. My concern is that the child goes to the US for this experimental treatment, which might work to some degree, but will still leave him very disabled, but possibly more aware of the fact as he gets older. Unless the treatment can  deliver him a near normal life if it works I don't see the point in putting the child though it.

Obviously I am not a medic with all the facts, but having some knowledge of brain damage and its effects this is why I am so concerned.

[Nearly Sane]

I think this is a good piece

http://blog.practicalethics.ox.ac.uk/2017/07/the-sad-case-of-charlie-gard-and-the-rights-and-wrongs-of-experimental-treatment/

[Rhiannon]

Accompanied by some startling comments.

I think what I'm struggling with is the fact that his parents aren't accepting that keeping him alive hurts *now*. They say that if the new treatment causes him pain they will stop it but they aren't accepting that he can't communicate his pain because of paralysis and *every day* he is in pain. Instead they tweet pictures of an apparently contented baby without explaining or accepting the fact that he looks content because he can't move. I understand their wish for him to be ok but not their refusal to engage with the doctors and experts who really know how things are. And horribly I'm finding myself not liking them much, and I don't like myself for that either.

[Shaker]

That's what I was trying to say in #38 - and would have if I'd spent more time on it.

[wigginhall]

Accompanied by some startling comments.

I think what I'm struggling with is the fact that his parents aren't accepting that keeping him alive hurts *now*. They say that if the new treatment causes him pain they will stop it but they aren't accepting that he can't communicate his pain because of paralysis and *every day* he is in pain. Instead they tweet pictures of an apparently contented baby without explaining or accepting the fact that he looks content because he can't move. I understand their wish for him to be ok but not their refusal to engage with the doctors and experts who really know how things are. And horribly I'm finding myself not liking them much, and I don't like myself for that either.

Yes, I saw the mother say that parents know best, which is obviously not true, and the media circus really is off-putting.  There is an American pastor who prances around outside the court, who is really obnoxious.   I suppose the right to life people have taken it up, and the right wing, who are saying that the NHS are a Nazi death cult.   Well, for sure private health insurance takes care of all sick kids in the US. 

Been chatting with various US people online, and they often think  that the NHS means government oppression of individuals, and I keep saying that actually Charlie's rights are being upheld by various courts, so the vulnerable child is protected by these structures.   

[Rhiannon]

I should think working at GOSH is grim right now. Death threats and hate mail aplenty.

[wigginhall]

I should think working at GOSH is grim right now. Death threats and hate mail aplenty.

Well, the right wing start to distort it completely.   Here is a piece from Fox news which is wrong on about 4 counts.  'Big government', for one thing, since the government does not decide who receives treatment, and the judiciary are independent.   In fact, it's Charlie's rights that are being protected, but they don't see that.

The anti-abortion people are getting in on the act, and they tend to be pretty nasty. 

http://www.foxnews.com/opinion/2017/07/10/charlie-gard-why-his-struggle-may-soon-be-ours.html

[Rhiannon]

Yes, it's frightening. And of course it is being used to advocate for policies that will lead to the unnecessary deaths of many more babies and children. The US doesn't exactly have a good record on infant mortality.

As an aside, my grandmother died as a protest happened outside the hospital when my family (and many others) needed peace and space - people protesting outside the hospital need to remember that there are children and families using GOSH who deserve to find calm and safety there.

[wigginhall]

I think there are plenty of cases like Charlie's but usually, the parents accept medical opinion.   I'm not sure why this case has aroused such a clamour, partly I suppose, because the right wing can use it to attack 'socialized medicine', big government, and so on.   Far better that hundreds of children die because they can't get private insurance, or the money runs out.   

It's ironic really that Charlie's parents haven't paid a penny, as far as I can see; still, what counts are parental rights, not children's. 

On the other hand, the Tories are keeping quiet and not lining up with the right to life people.

[floo]

It is what is best for the child, not campaigners!

[wigginhall]

Or parents.

[Rhiannon]

I think there are plenty of cases like Charlie's but usually, the parents accept medical opinion.   I'm not sure why this case has aroused such a clamour, partly I suppose, because the right wing can use it to attack 'socialized medicine', big government, and so on.   Far better that hundreds of children die because they can't get private insurance, or the money runs out.   

It's ironic really that Charlie's parents haven't paid a penny, as far as I can see; still, what counts are parental rights, not children's. 

On the other hand, the Tories are keeping quiet and not lining up with the right to life people.

I think cases like this happen all the time. In this case the parents have been able to use social media and crowd funding to further this claims in a way that wouldn't have been possible on the past.

I'm no expert on how the US system works but clearly the Gard family aren't wealthy. I wonder if they were American whether they would have been able to access the kind of healthcare that GOSH have offered Charlie.

[wigginhall]

I think cases like this happen all the time. In this case the parents have been able to use social media and crowd funding to further this claims in a way that wouldn't have been possible on the past.

I'm no expert on how the US system works but clearly the Gard family aren't wealthy. I wonder if they were American whether they would have been able to access the kind of healthcare that GOSH have offered Charlie.

I think plenty of kids in the US die without insurance, or the money runs out, or the insurance company says you're not eligible.   Charlie has been cared for for months, with no payment from his parents.   That is shared risk. 

So the right wing have to lie about this.   

[floo]

I am so glad I don't live in the US! Britain isn't perfect by any means, but I wouldn't live anywhere else.

[ProfessorDavey]

http://www.foxnews.com/opinion/2017/07/10/charlie-gard-why-his-struggle-may-soon-be-ours.html

Terrifying.

Although there is a veneer of 'reasonableness' about the interview it is chilling that never once do they talk about what is in the best interests of the child - it is all about absolute rights of the parents. In fact the only mention of 'best interests' is saying that giving treatment might not be in the best interests of the funder.

Astonishing too, from the USA that they seem to be saying that you cannot put a dollar value on a lie, but that is exactly what happens in an insurance based system - you live or die on the basis of how much you can pay.

I was also astonished by the comment about 'who controls the controllers' - this from people who want absolute rights for parents to make decisions regardless of whether it is in the best interests of the child, with no check or balances. The whole reason why we are having this debate is precisely because we have checks and balances (people who control the controllers) - where there is a difference of opinion on best interests, we don't simply take the side of the parents (nor of the medics) we allow the legal process to consider the relative claims and to come to a judgement. And we allow several layers of appeal.

[Sassy]

It will give the parent's a sense of closure, knowing that everything that could be done, was done.
The parent's have to try and do everything within their power to save their child no matter how long their child lives.
Sometimes, we do everything possible in the hope something will change the outcome.

The child should be allowed to America and treatment given. If it, fails the parent's will still lose their child but will not be left
with the question:- " What if ?"

I would send the child with blessings and let what will be, be.  HOPE, is what sustains us all, in the darker moments of life.
This family and child have the right to keep that Hope alive till the moment the flame flickers out naturally.

[floo]

According to the America neurologist in charge of this experimental treatment it only has a 10% chance of working. It is possible that Charlie Gard's condition is beyond help. Anyway the neurologist is flying over to the UK next week to check out the baby's condition for himself, to see if he would be a suitable guinea pig.

[Nearly Sane]

Aye!

http://www.bbc.co.uk/news/uk-england-london-40691478

[SteveH]

His parents think that it is better that he is alive, than he is dead.

I agree with his parents.

He won't be alive much longer, whatever happens. Not necessarily referring to HWB, but often the so-called "pro-life" movement proves heartless, cruel and cold.

[Rhiannon]

And dangerous and ignorant.

I despair of this now. The parents plea for calm is 'people say nasty things about us too.'

[SteveH]

It will give the parent's a sense of closure, knowing that everything that could be done, was done.
The parent's have to try and do everything within their power to save their child no matter how long their child lives.
Sometimes, we do everything possible in the hope something will change the outcome.

The child should be allowed to America and treatment given. If it, fails the parent's will still lose their child but will not be left
with the question:- " What if ?"

I would send the child with blessings and let what will be, be.  HOPE, is what sustains us all, in the darker moments of life.
This family and child have the right to keep that Hope alive till the moment the flame flickers out naturally.

Sanctimonious crap. The doctors should be listened to, as they are the experts. One feels for his parents, but they are too emotionally involved to make good decisions.

[Rhiannon]

Sanctimonious crap. The doctors should be listened to, as they are the experts. One feels for his parents, but they are too emotionally involved to make good decisions.

I think that there is a huge fear of what happens next when a child dies. I think this is what is dyivibg them - fear of loss. It's understandable but it isn't right. And they seem to have totally lost sight of the humanity of those who are responsible for their son's care.