Charlie Gard

I agree devongirl and we can't know how the poor little lad is feeling, whether he's in pain or not. After all this time I would think it's highly unlikely that he'll ever recover.

Rigby Should parents always have the last word? Not always because each case is individual, but as baby Charlie's case has become worldwide news with so much interference - even from Trump and the Pope for goodness' sake who know nothing of the medical side of his case - then I think the parents in this particular instance should have the final say.

Charlie's mother has said that one child treated in America was in a similar condition to Charlie and is now learning to ride a bike. She has also said that several children given the treatment have not just stabilised but have continued to improve. She is realistic about the fact there is only a 10% chance of the treatment working but she wants him to have that chance, and if it doesn't work she will 'let him go'. It seems a very normal request for any parent to make, and I don't see why the treatment can't be given in this country. I'm sure that would be the parents' preference rather than having to transport their very sick baby halfway across the world.

Why?

Mattie, yes, I realise that, but GOSH opposed that.

devon, I didn't mean die - I meant let the parents take him away for other treatment.

My feelings on this seem to change daily. I think I know what I would do but I suppose it's different when you are actually in that position. One thing I definitely wouldn't do is broadcast it over social media. I would want privacy not a media circus .

Mattie I suspect the answer lies within the Hippocratic oath, as Rigby has said; if they consider (jointly and with the courts) that letting him go will cause him harm, they are going against that oath.

Perhaps if the medicine can be sent here and the child not have to travel there's no harm in trying it. Provided the parents are prepared to live with the result. There's talk of an improvement of only a few per cent. But what sort of improvement? Vision? Hearing? Being able to move or breathe on his own? Do they know or is he being used as an experimental Guinea pig?

GOSH have to abide by what the courts have ruled - he could only leave the hospital/ country if the courts say so.

Sparkle do you think the parents should have the last word in this particular case or that as a general principle parents should always have the last word?

I don't understand why GOSH don't let the child go. If the parents think that he will be cured or whatever, let him go. They have done their best for him.
Personally, had he been my child, if I knew what the future held for him, I would probably have allowed him to die with dignity long ago. But, not having lost a living child [only three miscarriages], I don't actually know what I would do...

Not we but I

Ah - I think we understand now Nell what I meant by my comment was that rather than young fit people wanting to get rid of older people, I meant that any older person wanting to choose to end their own life themselves couldn't easily do that - we aren't allowed easily to make that decision but may be kept alive when we don't want to be - hence the whole dignity in dying debate. Sorry I wasn't clearer

But NellD if the doctors hadn't already 'played god' as you describe it, this poor little scrap would have died long ago. Their Hippocratic oath tells them to first do no harm, they must now firmly believe that this baby is suffering before taking the stance that they have. It's a dreadful situation all round but it wouid appear that the mother in particular has an unrealistic view of the outcome of any experimental treatment. Can you imagine the howls of protest if an experimental treatment was suggested for a baby in other circumstances?? It's as if he's not got any real hope so what the hell, let's just blunder on and give him yet more treatment. This is not - and should never have been - about the parents. Let him be.

"Speak through the earthquake, wind and fire,
Oh still, small voice of calm"

We are alays crying out for being able to make the decision to die with dignity, and even severely sick people are denied this right. How very, very sick must this child be that doctors and courts decide to let it go in pease? It is heartbreacking for the parents and my heart goes out to them but please be realistic and let your baby go...

Poor little Charlie, my heart goes out to him and his parents and all the medical team who have done their best for him ..... but I think the parents should have the last word because, after all, they have to live with whatever happens whereas the rest of us will eventually move on.

Hollycat, Speaking from a past experience, I found your post unbelievably awful. Uninformed, judgemental and wrong.
Especially the comment " GOSH have been messing about with this child for 7 months"
How low and inaccurate is that? Unacceptable.
You really have no idea do you?

NellD there is not the slightest shred of evidence that Charlie's care is being affected by resource considerations - do you know of such evidence? No one is pretending the NHS is perfect but I think the staff at GOSH are certainly of a high and caring calibre. As for the young bring tremendously disparaging to the old - what a hard and dreadful sweeping statement - I'm sorry if that's your experience but it's not shared by everyone. I don't understand your last sentence at all so can't comment on it.

So well said Day6 totally agree.

I'm ok thanks. I know how to make my own decisions and your comment is rather judgy.
Not all doctors and nurses are fabulous and pretending that they are doesn't help anyone.
The young are tremendously disparaging to the old.
And let's not beat about the bush here, decisions in hospitals are often driven by financial considerations.

TBH, I think pretending that the NHS is full of angels won't do anything to improve matters. Besides, it's my opinion and I'm entitled to it, as are you my love, but don't imply that we don't have the brains to choose how we die or if it ain't your way it's wrong.

There was a message on the internet page of a leading paper the other day saying 'Don't pretend you care about Charlie Gard if you don't come to the rally to support him'. Where has dignity and consideration gone when people are shouting and waving placards when they are ignorant of the facts? What do they think they will achieve? GOS Hospital staff are among the best in the world, they have the informed opinion, and his parents will fight to the last breath to keep him alive and try to help. Someone said the tragedies in this life are the conflict between two rights - and never was this better demonstrated. So sad, and through it all this tiny child, who is apparently deaf and blind, is living a life that none of us can know. Who can say what he is going through?

It must be incredibly difficult these days when a baby is born with these problems, as they can now be kept alive artificially with ruly awful disabilities. It must take enormous strength for parents to agree to the removal of life support I really can't imagine what it must be like.

Five doctors, from various parts of the world and one eminent chemist have now said the medicine could work. It's taken by mouth and crosses the brain barrier. GOSH have been messing about with this child for 7 months now when various courts have said the machines could be turned off. If he has a chance of life he should get it US will give the treatment free even sending it over here if the baby can't travel, so someone's pretty sure he could benefit. Only 16 EVER known cases of this genetic condition and because no one managed to help the others this child should not just be written off. Even if this IS the end, why can't the parents take him home to die as they want to? Time to end these inhumane rulings. Look at Aysha King whose parents were told he'd be blind, deaf and brain damaged at the end of his cancer treatment. Fancy hunting the parents down across the continent! Thanks to the parents (not the doctors) he is in mainstream school and u tube shows him learning to ride a bike! Time for less draconian measures here in the civilised and caring UK.

I do feel for them, but why is it diagnosis by petition now? However many people sign up, they are not informed opinions and just wasting time and energy, ghastly people who want to force actions that suit their limited intellectual abilities and emotional maturity.

We seem to have arrived at the situation where public opinion or mob rule is holding sway in the most difficult and sensitive areas of life.....the Grenfell Tower situation is the same people saying they will not co operate with the judge......because he doesn't fit their identikit requirements....we have to be adult enough to let the experts do their jobs.

There are not always good outcomes from bad situations however many FB friends join the campaign.

I am not sure what dying with dignity is and some part of me is with his parents in their hopes of a miracle, we may face a similar situation in our family, we have decided if the worst happens we would let go..........but could we, if we had to?