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.

Hand ventilation is OK in transfer situations although it looks flimsy - but that depends ont he type of ventilator and the pressures, and any movement could cause an arrest and death once he has got so unwell.
I think there is also a huge security issue wrt taking him home. Both for staff contracted to be there and for CG himself ie what could go wrong, what additional trauma that could cause, and also, whether they'd go along with plans.

I didn't mean to post it for that, they were saying how unfair the deletions are, being quite complimentary about us I thought.

Anyway, having gone through a few pages I am actually pretty surprised by how sensible most of the posts are!

Whaaaaaat have you all been up to while I've been putting my rugrats to sleep?!

Happy to find a replacement thread here. Thanks Mucky.

I think what's happening is there are a few posters who right from the begining didn't want the issue of .Charlie .Gard to be discussed at all

I guess what they are doing is reporting as much as they can to get threads deleted.

I know this may be a stupid question but am not sure what would happen if Charlie arrested? Do they resuscitate or let nature take its course ?( before set time to move to palliative care)

Sorry...it is stuck in my head now,

I do think the censorship (for want of a better word) leaves an unpleasant taste in the mouth. Freedom of speech is a valuable commodity in this country, some countries don't have it. If someone posts something libellous or threatening, absolutely remove it. But telling adults that they can't discuss certain people in the most high profile legal case in the UK is a nonsense when MN are happy for the Daily Fail to reproduce threads that have resulted in people being identified.

I've never heard of Pistonheads. I am a member of a majority male site though, the comments over there are measured and informative, with less moderation. No swearing though.

Please please please move heaven and earth to let his parents take him home to die. They've fought so hard for Charlie to have a chance at life and despite it all haven't been able to fulfil their promise to take him to America for treatment. For the sake of some closure for them let them say goodbye at home and keep that promise to their baby. It's not impossible to put in a portable ventilator and a private nurse for a few days. Charlie won't go on to live but his parents must have some kind of peace and dying at home will help them come to terms with their loss.

I agree with Dixie about commenting/speculating on the parents future fertility, that's nothing to do with the case and no one's bloody business. That to me IS rubbernecking.

I think the threads have been measured and informative and intelligent in the main though.

I think I'm out though, at least for now, because I don't understand how we can discuss the case without mentioning They Who Are Beyond All Criticism.

I see my old friends are back.

Also if people object to the threads they should not need to feel the need to comment on them so I am as to why they feel the need to but that says more about them than me, #

leghoul I think C&C are actually frightened of the dying part (if that makes sense). Once I knew my child was dying and there was sod all I could do about it and we had to withdraw her treatment it was better somehow, I remember in my daughter's last moments she made a tiny noise that sounded as if she had passed wind, We laughed a little and when my mum apologised to the nurse she smiled and said your daughter passed loved with laughter in her ears - no better way to go. I hope you have some lovey memories you can go to which give you comfort,

My fear is that C&C will miss out on that opportunity.

**I sympathise with C&C of course but I don't subscribe to the 'all parents who love their child' would do this narrative

I think the insistence of the family's supporters (for the avoidance of doubt, not intending a criticism of the family themselves!!) on pushing that narrative is one of the reasons that tempers are running so high about this case. My parents agreed to withdrawal of life support from a sibling of mine after getting hopeless news about his chances of any kind of quality of life. Every time I come across some moron commenting online suggesting that "no decent mother would ever stop fighting for her baby" or that "the only kind of mother who would let her child die is one who's only interested in her hair and nails and going to the pub", I want to find someone to punch in the face. The CA shower went out of their way to polarise things into good parents v bad parents (specifically mothers, because it's primarily mothers whose grieving gets policed) and the debate has become increasingly toxic as a result.

I'd suggest that people keep to statements from the various parties, court judgements, and tweets from recognised journalists who were/are present in court. Even though the CA FB page has involvement from CY/CG/LG there's the possibility that wants are being expressed or taken as facts.

Unfortunately, not even the media can be trusted to get it right. I'm sceptical about the BBC news item about reclaiming costs - not doubting the poster, but where the BBC got that from. I'm also not sure where the idea of C&C suing GOSH has come from.

I'm not being all Head Girl about this, especially as I never even got the heady heights of ink monitor, but just that what makes MN good, and shown repeatedly in the various threads about Charlie here, is the ability to be compassionate at the same time as going for accuracy and analysis. That is a pretty unique combination.

I think the Pistonheads posters make a good point. But, as I said, the decision's made now. MNHQ have not exactly been trigger happy on this; people have said on previous threads they wanted the whole lot taken down and that didn't happen. Feelings got very intense at the end of the last thread and while I think they were justifiable I can see why they tipped it for MNHQ in the end. If we just get on with having a sensible discussion, use measured language, and ignore any derailing posts, we can get on ok.

Olympiathequeen

It's not that simple, simply put.

Leghoul I can't imagine how difficult it must be to have to make such a decision.

Thanks for clarifying wrt hand ventilation. It just seems such a huge risk when a patient is as ill as Charlie is?

I do think Charlie's parents need someone close to them to sit down and go through the huge risks of moving him with them. I have had huge sympathy with his parents throughout and I can understand why they want him to go home but I really cannot see how it would be best for Charlie. Surely it would be better if they could have the opportunity to take him home after he has passed, in a cold cot, and to spend some time with him then?

I can't begin to imagine his parents' pain, I can understand that they don't want to let him go, why they might want to hang on until after his birthday but all I can think is that poor little boy

Thank you. It was horrible and the most painful awful surreal horrifying thing to have had to do, on an emotional level. I then hated myself for not taking it to court, for going along with it. But with hindsight, I can see that my child's suffering had already gone on long enough and prolonging it wouldnt have been right, even though there were some unknowns. I'm glad I've got that distance now (quite a few years down the line) horrible nightmarish place to be in. I hope I don't come across as parent blaming, but I've read so much even from doctors, journalists saying that every loving parent would do similar, that I think the effects of this case moihgt be felt among quite a few people who have had to make this impossible decision and I hope they're all doing OK.

Olympia I do see what you're saying and I really feel for them. But I would rather see the avoidance of pain for Charlie put first and that means not prolonging his suffering any more than can be helped.

I do not agree with any decision to claim back the cost of home end of life care from the NHS in any circumstance.
That was mentioned on the BBC News at 6.

olympia don't you read the medic reports?

It's not possible to take him 'home'

We can even argue that it's not his home. He's been at GOSH most of his life.....that's home to Charlie. It's about Charlie after all

Olympiaqueen have you READ. The proceedings from today?

Have you read how hard GOSH have worked to try and come up with a plan? Have you read the numerous FACTUAL posts here and elsewhere detailing why that is physically and practically impossible, and also not in Charlie's best interests?

Have you?

If not, you really should.

I feel greatvsympathy for the parents as I do honestly believe that they're not of sound mind at the moment and are not surrounded by people who can help them make healthy, rationale choices. Rather, are looking to further their own agendas.

That said, I'm increasingly reaching the point where I feel that the hospital is really the only place that Charlie can finally be. It's too disruptive and unkind to Charlie and other parents and children in the hospice to move him. Hopefully GOSH has greater infrastructure to find a suitable location. My DH is an HCP and he thinks what might work would be to find a suitable location within GOSH well away from PICU and staff with new HCPs who have no link to the case and whom the parents will hopefully feel more comfortable with. He can't see why from an insurance point of view, thatvwoukd be an issue as it looks like a court order will need to be made which will order the end of life care plan. The necessary procedures are being carried out in the hospital and they are not clinically "difficult" in that they are likely to lead to a successful claim for them not being carried out properly. There could be two paeds etc there to vouch for each other anyway.

I wonder if that might be the least bad option

I agree the rhetoric is hard to hear for parents who have made that heartbreaking decision, and I also worry about the effect this will have for parents in the future.
All we've heard for weeks now, in every medium, from pretty much every angle, is that if you love your children , you 'fight' for them. Any parent would do the same, well any parent who loves their child enough.
I thinks it's a very dangerous narrative

alcibiades The news reader on 6pm BBC news said that the parents lawyer had said they could use private healthcare for Charlie's care at home and reclaim the money from the NHS. You can watch it on the iplayer if you want.