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Charlie Gard

(742 Posts)
devongirl Sun 09-Jul-17 18:18:35

My heart absolutely bleeds for his parents, but I can't help thinking it's time to let him die in peace..

trisher Wed 26-Jul-17 11:43:38

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.

devongirl Wed 26-Jul-17 11:58:23

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

Galen Wed 26-Jul-17 12:11:28

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

merlotgran Wed 26-Jul-17 12:11:29

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.

Welshwife Wed 26-Jul-17 12:15:34

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.

Iam64 Wed 26-Jul-17 12:24:20

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.

jollyg Wed 26-Jul-17 12:37:12

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

paddyann Wed 26-Jul-17 13:12:34

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

devongirl Wed 26-Jul-17 13:32:06

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.

Anniebach Wed 26-Jul-17 13:33:14

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

Tegan2 Wed 26-Jul-17 14:02:21

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.

devongirl Wed 26-Jul-17 14:04:32

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

Welshwife Wed 26-Jul-17 14:26:16

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.

BlueBelle Wed 26-Jul-17 14:41:41

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

BlueBelle Wed 26-Jul-17 14:45:14

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

merlotgran Wed 26-Jul-17 15:03:58

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.

Tegan2 Wed 26-Jul-17 15:07:07

I don't think I've ever seen two people in the public eye look so sad and haunted sad.

devongirl Wed 26-Jul-17 15:08:44

I hadn't taken on board that CG had been apparently healthy for so long, no wonder the parents are heartbroken.

BlueBelle Wed 26-Jul-17 15:17:18

Only the first month Devongirl

merlotgran Wed 26-Jul-17 15:21:13

I think problems with Charlie's health were picked up very quickly. He was transferred to GOSH from the hospital where he was born. His parents referred to the fact that he has never slept in his own cot so it sounds as though he was kept in hospital from the start.

devongirl Wed 26-Jul-17 15:28:36

Oh, right.

whitewave Wed 26-Jul-17 15:30:59

Would blood tests have shown up the problem. They are done more or less at birth aren't they? I'm sure someone knows?

Anniebach Wed 26-Jul-17 15:37:11

Not all babies sleep in a cot from birth, many sleep in a crib, I didn't know he had been taken straight from the merternity ward to GOSH

harrigran Wed 26-Jul-17 15:54:36

If the baby was kept in hospital then doctors must have known there was a problem from birth.
Having nursed people on life support I would not like the responsibility of caring for someone outside a hospital environment.

BlueBelle Wed 26-Jul-17 16:31:51

In the write ups I ve read it clearly said after a month the parents noticed he was not moving or holding his head as expected and consulted doctors (which to me implies they had taken him home ) but I agree the father has said we want him to just sleep in his own bed but I have never read that he went from maternity wing to GOSH
I think the father especially is really bitter and in his last speech saying they will let him die he is blaming the hospital, doctors and courts jfor the wait in his treatment
Both parents are still saying he would have been a normal child if he d have had the treatment earlier
They have had nearly a year of GOSH s treatment all their legal fees have been free and a million plus pounds raised for their use I think whilst understanding their great sadness and difficult situation they have been more than helped through it I m sure many people who lose their beautiful babies or children to diseases wish they could have as much support