Charlie Gard

Paddyann x

The deadline for a decision on his end-of-life care has now passed

www.bbc.co.uk/news/uk-england-london-40740693

don't know if this means his life support will be stopped very soon after arrival at the hospice?

Anniebach I totally agreee with you ,all the remarks about the "cost" to the NHS, the failure to see these parents are on the last leg of a journey and they NEED to complete it their way.I too sat with my mother as she died in hospital...with just a curtain sheilding us from the eyes of the other women in the ward and visitors coming and going and it wasn't pleasant,we would much have preffered a hospice for her and my sister and I .It wasn't pleasant for those others in the ward either .I'm glad others haven't had dead babies taken from them before they were ready to let go but I have ,as have you and I know how it feels .These parents are grieving now and it will be worse much worse when their baby has finally gone.There is no worse feeling than the emptiness left after a baby dies ,when you have to walk out the doors with empy arms and leave all your hopes and dreams for that little life behind .I would happily give this young couple everything they ask if it makes it even a fraction easier .

That should have been regain one.

They are fearful. They are defined now as Charlie's parents. When he dies they will no longer know who they are, they have lived that role for 11 months. They have forgotten what normal life is. They will struggle long and hard to retain one.

Quite so Baggs

I agree, which is why they should have a trained and experienced counsellor with them now..

I think everybody aches for them. Thinking they've gone about things in what is perhaps the wrong way is not condemnation. It's saying that it would appear to have made it all even harder for them.

If the baby can feel physical distress he can feel other physical feelings, the touch of his parents for example and comfort from this ?

I am not, as claimed by annsixty playing devils advocate, I cannot agree with the majority here that common sense and logical thinking works when grief is raw.

This couple are suffering , they are fearful, angry, in deep despair , such a dark place, they are suffering the dark night of the soul. Please stop condemning them for not thinking clearly , the awful thing is - they think they are , I ache for them

I feel the same, tegan2. Good post.

No apology needed, I remember the film shots of the poor boy in hospital and the discussions on right to die.

Yes Annie, sorry, you're right.

He suffered severe brain damage devongirl. ,

Annie I may be wrong, but I think that was a rather different situation: people have been known to come out of comas after years, so unless it was clear that he would never have any brain function, I can relate much more to his parent's wishing to keep him alive.

But we have to accept they have only had a few days, until this week they had such hope , we have known for weeks he cannot live, they didn't . He didn't seem distressed on the picnic on the roof , if he is brain dead he will not know fear, distress if moved , so what trauma ? Can a brain dead person feel anything? If he will experience trauma he is not brain dead surely?

Tony Bland who was serverely injured at Hillsborough was kept alive for four years even though in a coma and no hope of recovery

I strongly agree with luckygirl, what the parents most need now is someone with training and extensive experience to help them through this situation now; it can't be expected, obviously, that they can think reasonably, and they are in huge need of compassion and support - and privacy to deal with Charlie's final moments.

I am sure you are right annie in saying that to the parents this baby is not dead - I know you have personal experience of similar sad situations, and will know much better than many of us, who thankfully have not suffered in this way.

The parents do indeed need time to come to terms with their decision; but there has to be a moment when the decision is made to let him die - the longer it drags on, the more they will continue to bond with him and the more difficult the grieving process will be. Their emptiness when Charlie is gone will be compounded by a huge change in their life and status in relation to the media, which has filled a big chunk of their lives over the last few months. One cannot but fear for their long-term well-being, and, as I mentioned upthread, they need a counsellor beside them, both now and in the future.

I have seen situations professionally when young adults were saved following an accident, but later found to be brain dead and difficult decisions had to be taken. Unimaginably sad for them all, but I never came across parents who did not accept the prognosis and take the brave decisions needed.

I understand the parents' wish to see Charlie moved from the hospital to hospice care, because their relationship with the staff there has broken down. But that would satisfy a need for them, rather than necessarily being the best thing for Charlie, who will have to suffer the disruption and possible physical distress without any benefit from being elsewhere, as he is insufficiently conscious for it to make any difference to him.

This case does highlight the challenges of modern medicine. Charlie would have peacefully slipped away long ago before medical advances made it possible to keep his body alive with no hint of meaningful human life.

Every time I feel sadness and smpathy for the parents [before I was born my mum gave birth to a little boy who lived for a short while and my dad wouldn't let anyone take the body away; she'd had numerous miscarriages and stillbirths prior to that..I don't think either of them ever got over it]I also feel that they are behaving as if they are the only people ever to go through this sadness and they are making it far more difficult for people with sick children at the hospital and now at the hospice. There are also parents going through similar things that are still having to hold down a normal life eg work etc. The whole thing has taken on a life of it's own and the parents are feeding off it in some way. I'm not blaming them for this as I don't know what I would do in such circumstances. But I do know of a family who were offered media support [because the media do go out of their way to find stories like this] but turned it down because they wanted to deal with it privately.This doesn't mean I don't sympathise with Charlies parents. It's just that that sympathy now encompasses a wider picture. It's almost as if it's now like a storyline in a soap and people are getting enjoyment from their involvement with it [I don't watch soaps but they do seem to involve an awful lot of tragedy these days that people appear to enjoy; ditto hospital programmes that I don't watch..other than One Born Every Minute and 24 Hours in A&E that I only watch when channel hopping]

I agree Annie, logic can go out the window, hence the term "mad with grief" is very real and we all deal with death differently I know from my husband who lost a grown up son a few years ago, it never goes away, but one has to learn to come to terms with it

Terri, these parents have clung to hope for nearly a year, only this week has that hope been taken from them , just a few days . When your are grief stricken your thinking may not be logical to others who have not buried their baby. There is no correct/polite/considerate way to grieve , you just stumble through it .

already there.

I understand what you are saying Annie I hope their last moments with him are as private and peaceful as can be. I just feel that moving him to a hospice might affect the peace of those aleady and their loved ones who will have to face the same scenario.

With respect annsixty I think empathy includes the understanding that there is no right or wrong way to do things. There is only the way that individual can do things. And even two people in exactly the same situation will handle things differently. I don't feel any of us can judge them for anything they have done.

I wasn't singling out your earlier posts or anyone else's for that matter in my previous post.

But he is not dead to his parents , this you just do not understand Terri , he is not stiff and cold and blue , you see a corpse they do not.

Given the media circus that surrounds this tragic case I would also question, as others have said, how moving Charlie to a hospice will affect those already at that hospice who won't have long left either and their relatives. Where Charlie goes the media will follow, and possibly CA. Of course the parents last moments with their dear baby are going to be heartbreaking for them, but the poor little boy is effectively dead already.