Charlie Gard

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.

Oh dear, it's getting worse

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

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

Dies -=does

Menopaws your moving post said it all.

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

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?

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 ...

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.

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

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.

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 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.

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 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

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.

So bluebell, the doctors made a wrong judgement in not letting the child die? Surely hope must have started for the parents then.

I haven't heard any so called celebrities supporting the parents

Trump and the Pope?

I think if a baby, a child or an older person is extensively brain damaged which they said this baby was after the first month of life, then yes they shouldn't be artificially kept alive if the doctors don't believe a reasonable life can be expected in the little GN run A very hard call for everyone involved the doctors the parents and the extended family but the professionals have been fighting for the baby to die with dignity for many months now
I m afraid I counted the Trump and the Pope and the preacher in my celebrities remark perhaps I should have been clearer and called them people of important world status ? Although many would disagree with that too

I'd forgotten that dreadful preacher

Trump a celebrity? If you think so

The Pope, not a celebrity unless you consider queenie a celebrity

Then bluebell, it was the hospital who first gave the parents hope by not letting him die when he was first diagnosed , I am not criticising them but cannot critcise the parents either . They had a healthy baby for several months then all this happened

Celebrity- the state of being well known

That 'll do me

He was not healthy for several months - in fact he only 'appeared ' healthy for I think two months. GOSH had to treat him until they felt there was nothing further to do because of what they believe is the irreversible brain damage caused by 17 days of continuous fitting.

I read that he was born normally but within the first month his muscles got weaker and weaker until his brain activity shrank to nothing Neither am I critising the parents Anniebach anyone with a drop off human blood would pray for a recovery but by that time with no brain activity, the doctors and hospital seemed to know it was irreversible, Now some years back that would have been where the baby was made comfortable to die and my post was to say I believe at that point that may have been the best action instead of which he was placed on machines to live for him Obviously from then on the situation has grown dimmer and the hope grown brighter we now have the dreadful situation that is ensuing and I feel it is damaging everyone the parents, the baby, the hospital, and the nurses and doctors