Charlie Gard 17 re started

[muckypup73]

Ok guys, we have been very lucky to discuss this, please lets not give anyone anything to complain about, Mhq have been more than accomodating.

"It's so, so sad that there is noone around them who will say "it's time to stop fighting, go and sit with your son"." Maybe people are saying that, but C&C are not ready or able to heed such sensible advice. GOSH have certainly been trying, haven't they? And they do know what they're talking about, having seen parents' anguished struggles many times before.

It's so clear from GOSH's statements where the difficulties lie, you would think it would be obvious that it's not personal, just the way it is...

I am sure that there will be a very struct time table and treatment plan appended to the order which will not be made public

This is all so , I dunno, extreme ? I really feel the CA lot are just a bunch of sheep who are jumping on the bandwagon . I hate this sort of crowd mentality and public hysteria.

I think they are absolutely desperate, and have been all along, for Charlie to see his first birthday

I know this has been said a few times here already. But I don't think it's about the first birthday. They said clearly in their statement yesterday that Charlie would not see his first birthday.

I think it's about them coming to terms with it. Right until a few days ago they were convinced that he was not terminal and would recover to be a normal healthy boy with treatment. They fought with the whole world for that belief. Now they have to give up on that and maybe feel it will be easier to do that if they have a week with him at home.

I completely support the decision made by GOSH all along. I'm just trying to understand the parents thinking.

My guess is that the parents want him to die anywhere but GOSH!

"The problem is that although everyone is entitled to their own opinion, there are millions of idiots out there who believe they are entitled to their own facts."

I downloaded a book on kindle yesterday -
'Post Truth: The New War on Truth and How to Fight It' by Matthew d'Ancona, a journalist.
I hoped it might help me to understand this phenomenon which seems to be happening in many countries.
Fell asleep after reading a few pages last night. Have only managed a handful today due to this thread. So far it seems very interesting.

Their child will die. A week won't be enough. A month won't be enough. It is never enough. It is the unnatural order. Life isn't meant to be this way.

I understand why they want him home. I understand why this is not possible.

To my little one and to Charlie, you accumulated more love in your short time on earth than most in a lifetime.

i dont think any doctor worthhis training would volunteer to do this

I suspect but cannot be sure there is lots of rhetoric which may never see the light of day in a courtroom (e.g. "Suing the NHS", "recouping the cost of ITU care if at home" etc). This is a highly charged and emotional case which has, through social media and savvy posting, achieved a prominence unforeseen to date. There is no question the case has raised pertinent issues, imo mainly relating to the trust issues between professionals and parents. Without question there are lessons to be learnt in this regard.
Medical professionals are incredible. My son is alive because of them. However, I questioned every step of his journey and treatment and to be fair to them they indulged me but indulgment it was, as they were in charge and should we have found ourselves in such a terrible situation as the Gards then we would have been at the mercy of the medics,
BUT we trusted the medics. We were educated, vocal and engaged, as much as I am sure Connie and Chris are. We realised we were dealing with professionals who'd seen this nearly every week for over 30 years in some cases. So we trusted them to tell us the best thing to do. And it worked out for us but it may not have, for that I am grateful.
I am not sure what else would help on this thread but if any family of Charlie's are reading, go to him, spend time, take pictures and relish the life he has left here with his loved ones.

I feel that the Judge has no option but to rule in favour of Charlie's needs and not the wishes of his parents as they are not the most important in the court. He has partially done that by more or less ruling out taking him home. It is a massive shame they cannot agree to mediation despite numerous attempts being made and numerous awkward meetings. Although their barrister is working for them for free, he is trying to make their case very forcibly - no-one can say he isn't trying for them. Today, the Guardian's barrister was equally clear about the need for Charlie to be the first priority. I think the Judge may agree to the hospice (partially for the sake of GOSH) but it must be in Charlie's best interests.

No-one seems capable of stopping internet abuse. There are a handful of prosecutions but no real deterrents and none for international posters.

There's no way the parents will be calm when the time comes to remove the equipment or turn it off

Does anyone know the correct procedure when the time comes?

What actually happens?

Maybe by them pushing the boundaries and options being presented other parents may start to get options too. And we as a society may recognise the great need for hospices - and where there is support, funds follow.
I get the that the NHS is stretched, but it doesn't hurt having these conversations. The whole hospice, palliative care and maggies was built from such thoughts.

I remember watching Connie do an interview before and she said she felt Charlie really deteriorated when they 'made her stop Breastfeeding Which is presumably very soon after he was admitted and he wouldn't have deteriorated as quickly were she allowed to continue? So she hasn't trusted their judgement for a long time, and from very early on there was conflict.
I feel like the relationship is utterly irreparable, and has been for a long time time.

I'd imagine that they will be firmy told that they can stay, hold him and grieve, but if they interfere or lay a finger on staff security will remove them. I'm sure some burly security guards are on PICU 24/7 at the moment

I not sure posting the clinical path of extubating a dependent infant is wise but I am sure the thread will survive without that information.

I don't think that C & C are of low intelligence at all - particularly Connie. I've been impressed with their written communication and, to a certain extent, with their oral statements which I think are fairky eloquent

I think they are totally misguided and surrounded by poor advisors. But I admire their determination; litigation is soul destroying and gruelling in and of itself.

headifthehive55: what options did Charlie not get? He got options but not what his parents wanted because they denied his critical state.

Someone (can't remember who!) with experience in palliative care posted a very thoughtful description of what happens when a child passes - not sure if it was on this thread or the last one though.

CY has said her piece but it's been factually incorrect.

I not sure posting the clinical path of extubating a dependent infant is wise but I am sure the thread will survive without that information.

Absolutely agree. I think I will leave this thread if it strays into the prurient

There was another post (thankfully ignored) about resuscitation in the case of organ failure etc

I think we should absolutely avoid all discussions of that type of thing. It's not dignified or fair to Charlie

I can't imagine how it's justifiable to even move Charlie to a hospice, to be honest. I recognise the needs of the parents as being so important - but they're not more important than the needs of Charlie. Surely if there is any risk at all of him suffering a painful death in transit then they just cannot afford to transport him? I feel like so much in the UK is far, far too focused on parents' rights and not enough on the rights of the child.

What breaks my heart is that when the parents talk about taking him home, it's not really a realistic request but grief and denial. They talk about wanting to give him a bath, to put him in his cot that he's never slept in, etc. But this is what you'd do if you were given a week with your healthy baby back - and they can't have that, not now. Essentially it's that terrible grief feeling of wanting the person back - except in this case they've got someone to blame and to say that GOSH is taking that away from them - but they're not, it's already gone. :(

CY has said her piece but it's been factually incorrect

I agree. As I said, I think they are totally misguided but they are not "thick". Deluded most probably