Charlie Gard

Re the AK case, I don't really think it's fair to say the doctors made the wrong decision - hindsight is a wonderful thing. That case is very different from this. He was not terminally ill he had had the tumour removed and the dispute was about the next stage of the treatment and associated risks and benefits. Proton beam therapy only works in about 10% of cases and AK has not made a 'miracle' recovery - he needs speech, physiology and occupational therapy . No one will ever know if his recovery would have been greater or less if they had followed the traditional chemo route. The doctors made the decision in good faith. As we know, pbt is available now on the NHS but has not replaced chemo. The doctors at the hospital. As in this case, received horrible abuse and death threats including the hope that their own children get cancer and die.

i think the parents have been fed a lot of hope that has taken them into the realm of almost make believe They are seeing their baby running, cycling and being a normal or almost normal little chap that the 'bad' doctors are trying to prevent happening It's become a 'them and us' situation They have become carried along in a bubble of protesters and celebrity egos Of course they adore their baby of course they are so desperate to see him alive and well but they have had their reality taken from them ... 10% of nothing is still nothing what improvement has the doctor ever said they can expect? Can he make him breathe for himself, can he make his arms and legs move, his eyes see, his ears hear will he respond to his mums voice will he laugh or cry ?
Unfortunately everyone seems to be missing the point that if it was left to a God (if you believe) or fate if you don't, the baby would have died after the first month he has had 10 or 11 months of lying in limbo whilst the parents live in hope and the rest of the world malign the doctors who saved him from his early death In many ways it would have been better for him ( and his parents) to have just quietly allowed him to breath or not for himself eleven months ago

Devongirl, yes I have considered the difference between one doctor and a team, but I am trying to look at this from the parents possible thinking too.

I stress that I have the utmost respect for the team at GOSH. It appears they have tried extremely hard to work with Charlie's parents as I'm sure they do with all parents and families. I respect them also for taking this case back to court even though the decision had already been made to allow Charlie to die. I'm not sure they could have done any more in this rare and heartbreaking case.

However, I would just say that it was a team of doctors and other professionals who made the wrong decision in the Ashya King case, with very painful consequences for his parents. When treatments are new I think it is still possible that decisions can be made in good faith that turn out, with hindsight, to be wrong.

Annie I think you have to consider that we're not talking about a single (possibly rogue, some out there unfortunately) doctor; this is a whole team of highly qualified and experienced doctors who have come to this conclusion, even though their lives would have been much easier if they had just given in to pressure.

I don't think the US doctor has said that Charlie has a chance of 5 to 10% improvement but that he has a 5 to 10% chance of improvement without specifying (or knowing) how great that improvement might be. They are very different things.

I am still not coming down on either side, but I do ask - have doctors never made the wrong decision? This surely must be in the parents minds

Moving posts from people with personal experience. I was pleased to read Menopaws post about the doctors at GOSH. They do push the boundaries on research and treatment for sick children all the time, and will have tried everything. Many years ago I visited GOSH when a friend's baby was being treated there. It was a wonderful place then and remains so. My friend's baby was successfully treated and it was only years later that she found he was one of the first to survive the treatment, before that babies who had been treated had died. The work they do is ground-breaking and life saving. If they have advised Charlie should be allowed to die it will be because they think it best for him.

Such a poignant post nfk.

Also, for poor little Charlie Gard, whilst we are informed that there could be a 5-10% improvement in hos condition, I am left wondering a 5-10% improvement of what? A % of very little will still lead to very little ...

Our firstborn was 12 weeks premature and died shortly after birth as no incubator was available. Apparently perfect physically the doctors said the lack of oxygen his undeveloped lungs supplied to his brain would have meant he would have been severely brain damaged, probably blind and possibly deaf.

I then went on to have three wonderful DC. Had he lived these DC would not have been here. My four delightful DGC would not be here. Caring for a severely disabled child often means that other children just don't happen.

One of my DGC was born seven weeks premature and did get all the help she needed but still has bad sight and a butterfly brain which can't concentrate. She will do fine with these problems, they can and are being overcome and she's now longer dragging along at the bottom of her class. But Charlie's issues are sooo very severe. Talk is of 5-10% improvement, but that will be a drop in the ocean of what he faces.

Just how much should we mess around with fate and nature?

I second that Anya my heart goes out to you and your family Menapaws a very moving post

Menopaws your moving post said it all.

Dies -=does

Well at least the judge has said something about the abuse and threats GOSH staff are receiving. I think it's a good idea that the US doctor comes over here to examine Charlie but it does look like the two areas Boone can be sure of is he feeling pain and dies he have irreversible brain damage

Oh dear, it's getting worse

www.bbc.co.uk/news/uk-england-london-40593286

I also think these posts show the reality of life with a child with disabilities as they get older. In one area of work I was involved in I had heartbreaking meetings with parents in their 70s who were desperate about who would care for their adult severely brain damaged children as they (the parents) became increasingly unable to. We all remember Winterbourne. One of the sad telling phrases in MP's post was the fact that the parents are trying to raise money for adaptations to their home - we should be ashamed deeply as a society that that help is so difficult if not impossible to access.

Menopaws and BlueBelle I fully understand your points of view. What about quality of life for both the seriously disabled child and the parents?

Yes, a beautiful post Menopaws.

I have a nephew who is now in his twenties. He has cerebral palsy and will never be able to live a fully independent life. He was not expected to live beyond his teen years and as they themselves age, his parents are deeply anxious about how he will manage later in life as their love and care is all he has known. His needs have consumed their lives and mean that they cannot look forward to many of the things we would take for granted in retired years. Very sad. I can't help but look at little baby Charlie and think it will be better if he is allowed to slip away.

Menopaws what a moving, brave, realistic post.

I feel very sorry for the parents but the child should come first and be allowed to die peacefully, surrounded by love.

I have a disabled three y o grandson who has a genetic condition and misses part of brain stem, they didn't know this before birth, anyway the way they look after him is quite brilliant (the parents) and many lessons have been learnt by all of us about human nature, the medical world, our own emotions and attitude to disability etc etc.
What I hate about this case is how people will think badly of GOSH purely because of this publicity, they work wonders with our little man and millions of others.
As much as we absolutely adore and treasure our chap, my son and dil will have a lifetime of chairs and hoists, they are raising money to alter their house to accommodate his equipment etc and they live on a knife edge every day as one non breathing episode would end his life in a second.
He is loved deeply and is very bright and understands us and signs well but he will never walk or talk, be continent and his frustration leads to many a heartbreaking tantrum ending in injury and pain often and with all our hearts breaking just a little bit more.
In all honesty I wish he had died a tiny baby and they could have grieved and loved what they had had and remembered him fondly, we all know him too well now no when he goes it will be just awful.
My opinion and others can bitch about it all they want but I think they should love him and let him go, they will have others and remember him fondly instead of courting publicity and bad mouthing the brilliant medicL attention that we have in this country. Selfish and expensive. I'm done.

Yes,it's a horrible thought isn't it Tegan. Poor children.

Yes, I saw that. And the child cries so the mother knows she's distressed and probably in pain. One of the reasons why I find all this so upsetting is that [and I find it difficult to type this as it scares me so much I blot it out of my mind most of the time] my biggest nightmare would be to suffer from locked in body syndrome. The thought of it petrifies me, so thinking that these children are in that sort of situation upsets me terribly.

There was a lady on the News tonight who is hoping her 12 year old daughter will be allowed to die. She is more aware than Charlie is at the moment but her mother feels she has no quality of life.

But you're missing my point Anniebach You say the little one is not yet a corpse but he would be if man hadn't intervened in the first place He is not living a real life but a very very limited artificial one Perhaps I m not wording it correctly but I know what I mean
It not a natural or normal life and death situation it's actually a manmade intervention that has turned into a bigger nightmare than it originally was