Charlie Gard

I've just read that the parents have now accepted that it's impossible for them to take him home. A retired doctor and volunteer nurses from GOSH have apparently offered to help the move to a hospice and support his care.

Welshwife the treatment even if used early at its very best would have only slightly prolonged his life it was by no means going to be used to cure him and everyone knew that The parents were hanging onto every thread of hope and were given visualisations of him running, riding a bike and playing etc which even the doctor admitted wasn't the expected scenario

From bits I ve read he was born normally and seemed normal for the first month of life then because it's a muscle attacking (wasting ) disease he very quickly started to go downhill he was born August last year by September/October he was showing muscle weakness and was breathing very shallowly so he would have been going downhill before Christmas but I m sure the fits starting would have hastened his decline
I think the fact they have had Charlie for a year shows the dedication and large outlay of doctors, nurses and machines used on him
I m sure there are many many cases just as sad but they don't hit the headlines this prolonged death whilst understandable is too much for everyone most of all the little love

If the treatment would have had some good effect if given earlier it is the fault of the American doctor - he did not visit the child or read his notes when invited to by the GOSH, and they could not have felt confident about just giving the treatment if indeed it was available to them.
It would seem that the fits the little lad had about Christmas time caused the real problem - does anyone know what his condition was prior to those?

Just a very very sad case whichever way you look at it.

I agree, Tegan, it's very difficult to look at those beautiful photos and accept the terrible condition CG is in, poor soul.

From what I've seen of the people waving placards outside the hospital, they all seem to be grinning and enjoying themselves enormously [although I have to admit that I haven't seen a lot of coverage]. And, dare I ask if the fact that the photos of this baby have shown him to be a most beautiful child, have swayed many opinions? I only ask this because of the way I feel when I see those pictures.

I agree Paddyann, I remain the same as when this thread started, have no idea what I would do but he isn't my child and I am not trying to cope with the grief the parents are

All the same, paddyann, I do think jollyg has a valid point - their case has used up huge amounts of NHS resources which are, after all, finite. It would be nice to think they might make a donation to GOSH later.

can you put a price on YOUR childs life jollyg The parents have done what they thought they had to...simple as that ...we all live life differently it may not have been your way but that doesn't make it wrong

I admit I have not read all of the comments. However I do wonder how much this has cost NHS. Its easy to say that if a decision had been made earlier re treatment, he
might have been saved.

Have the parents been selfish? Cant say. Is it because our legal system is cumbersome. Cant say.

It is a horrible place to be in Court GOSH and Family. So sad

Thanks Welshwife, I read the book in some trepidation but found it to be one of those novels that isn't only a wonderful read, but it portrays accurately the level of a Judge's involvement in situations like this. They often meet older children. Of course, they aren't infallible, as the book demonstrates.
It's too easy to polarise this, suggesting that contributors who acknowledge the complexity before the Court as meaning total trust in the Courts. No, it's about acknowledging this is a tragedy and everyone involved will have feelings. The parents look exhausted and traumatised, who wouldn't be. The people threatening GOSH staff aren't expressing understandable feelings and I don't see their contribution as positive for anyone.
I'm still wondering how those who express distrust of our Court process would respond if responsible for a terrible situation
Ike this.

Ian McEwan's book. - The Children Act - is about a case which goes to Court for a judgement and the way the Judge goes about things etc - it is nothing like this case and involves a much older child - 17 years old. I found the book fascinating particularly the first half or so which is dealing with the problem. The second half of the book is more novel like but continues the story.

I would not like to be anyone deciding what to do in this baby case but if he was mine I think I would come down on what was best for the little one and would not risk causing him any pain - think I would leave him in the hospital but nurse him when all was disconnected.

I overheard a conversation in our village shop between a couple of old ladies (older than me, I mean) who were discussing the possibilities of Charlie Gard's parents taking him home.

One woman was absolutely certain they should be allowed to. The other one patted her on the arm and said, 'He's not a toy, dear.'

A simplistic view maybe but I can almost hear my grandmother saying the same thing.

As somebody said upthread. They won't come to terms with any of it if their wishes are denied.

I would think imo the move would be very traumatic, also impractical. The odds are high he'd die during the process

norose4 I'm not sure if your comment was directed at me, but it was a genuine query to ab

The doctors think he may experience pain Annie and from what I know of pain it becomes much worse when people are moved or disturbed, so moving him may increase any pain he is suffering. Of course the parents don't think he experiences pain, but if it was my baby I wouldn't want to subject him to any more trauma simply so he could die in a room in my house.

Will the move be a trauma Jalima? If the little mite is so severely brain damaged will he know distress, fear etc? I am not saying he should be taken home but am questioning the reasons for not allowing this

I am not trying to sound like an expert btw.

The parents want to take Charlie home but is that in Charlie's best interests? All the disturbance for a child so poorly who is going to die in the next few days?
Charlie will not know 'home' or 'his own cot' as he has been in hospital for so long hospital is all he knows.

I hope that doesn't sound harsh, but moving this poor child now is probably not the best thing for him even if it gives the parents some kind of comfort, and Charlie is the one who is of paramount importance. He deserves a peaceful death without the trauma of being moved.

Please stop this personalisation of someone else's tragedy

would

So ab, you don't have confidence in either the medical profession or the courts, how wouyld you have had the problem resolved?

Then Devro you have 100% faith in the courts, I do not.

So very sad for this family. & anyone else who has been faced with such a heartbreaking situation. I don't really think anyone else should be passing any comment(about the dos & dont's of the medical decision , The Pope, Donald Trump ??)other than offering absolute sympathy to the family. Many people will be deeply moved to support the family, but many many more people suddenly become experts & crusaders, jumping on a bandwagon that they don't in reality have the faintest idea about. They may presume they are helping , sadly the only thing that will eventually help this family is continued love ,support & help to accept the very sad reality of their tragic circumstances.Certainly shouldn't have Grannetters using it to trade insults to each other ?

If you believe we are entitled to our own views why the need to tell me my voicing of my views have gone on to long?

I really think the parents have been under veiled criscism by some on this thread ,I have not told anyone they have gone on too long

So easy to sit at the computer, read the papers, listen to news coverage and reach a verdict on these parents in a calm, clear minded way isn't it?