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 would also be left to stand if people who didn't want to be part of the thread just left us to it instead of reporting us. It just comes across as very childish.

Childish- yes.
Effective? Also yes.
It worked, didn't it? And I think it will continue. CA post the most disgusting vitriol on their page.
But here, if anyone dares to voice a less than identical view is reported.

It's not impossible to put in a portable ventilator and a private nurse for a few days.

Just like that. And all the oxygen needed? You have no idea how long it takes to get a ventilated child home.

From what I have seen and heard them say (I.e. not surmising and taking from the parents' own statements, before the report happy knobbers get going again), I doubt there would be any suitable place within GOSH they would be happy with.

Not to mention no nurse wants to do it! (It also would obviously need to be more than one nurse)

Olympia I felt very much the same as you do until I read the GOSH position statement from today. I can't see how Charlie can be moved home without there being a huge risk that something could happen to him during the transfer, which could mean he doesn't have a peaceful passing at all. I am sure that is the last thing anyone would want for him.

Whilst it's utterly devastating that it seems taking Charlie home isn't an option, and whilst I completely understand that his parents feel the need to do so, sadly I can't see it happening. The sooner his parents are able to come to terms with that, the more precious moments they will be able to spend with their beautiful boy.

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 wonder if this has been discussed with parents? I haven't heard or seen it mentioned?

At work, unfortunately the majority of babies/children we see who die have died unexpectedly, I.e accidents at home, drownings, chokings, SIDS etc and when working in those cases the absolute hardest part is telling the families we have to take their child from them (so we can take the child to the morgue) and then get them to leave. It's just so, so upsetting and traumatic. However, we do have some children with us who die because palliative care has been withdrawn and in those instances we try as hard as we can to get the baby/child home if that is what the parent wishes. If being allowed home to die just cannot be made possible I have known many families take the child home following the death in order to have some private time with them.

I can't imagine being somewhere with your child, who then dies, and then you just have to walk away from them and leave them there.

When my friend agreed to have her son's ventilator turned off (following head injuries in a car crash) she said that after he'd been taken to the morgue she remained in the hospital for almost four days, just sitting and sleeping in the hospital's canteen because she couldn't bear the thought of being away from her son. When her family did manage to convince her to come home she felt horrendous guilt for a long time about having abandoned him there. It was incredibly upsetting.

I think it must be very upsetting for any parent who has had to let go, to keep hearing these statements about any parent would so the same and the continues re-iteration about how worthy the parents are (in court statements etc) in doing this. I agree this mist be one of the things which makes people concerned about it all.

The feeling of having lost a child, and now combined with the feeling that maybe, in doing so they didn't 'do enough' or weren't a 'good enough parent' to add to it.

It's not right. I feel they keep making those statements in the court documents, to pacify the parents almost, not sure how to explain. But sometimes the strongest thing is to let go.

Moving Charlie would only benefit the parents

There would be zero benefit to Charlie, and would perhaps distress him

In terms of their barrister - He was obviously close to tears yesterday when stood behind CG when the statement was being read out, and there is no doubt that this case will have deeply affected him, but what happens if he reaches a personal point that he feels he is having to defends what he feels is indefensible (not saying he has, more of a what if?')

Could he as a pro bono 'walk away'? or would that be deemed unprofessional even without actually receiving payment.

Or is it always a case of always putting personal feelings aside?

Much discussion during case (and on the deleted thread) about why a portable vent will not be possible in this situation. A portable vent can only be used in a palliative transfer with a view to extubation within a couple of hours. It is a very short term measure.

The patient concerned requires full ventilation and ICU care which cannot be staffed, licenced or physically provided outside of a hospital. Therefore palliative transfer can only happen if the plan is more or less immediate extubation. This is the issue the court are trying to identify any other possible alternatives to.

There is a faint question about whether a palliative team could possibly be formed in time, but would involved 2-3 ITU paediatric specialist doctors, several nurses so they could work in shifts, and full sized equipment. So far GOSH have not managed to identify one doctor who is available to do this and ITU care cannot be set up outside licensed premises.

The two standing possible solutions: to have some days at the hospital with extubation there, or transfer to the one hospice that has been able to say they could offer a place at the end of this week, with extubation happening within a few hours of arrival.

I didn't actually read all of the last thread so I'm not sure why it was deleted

Hopefully if we can discuss in the most geveral of terms, that will be acceptable.

As I've said previously, I don't think the parents should be subject to criticism as I think they are genuinely not able to make appropriate decisions at the moment and are not receiving proper and ethical support and advice

After a gap of several months I logged onto Mumsnet & started participating in 'Talk.' Mainly because of the issues of parental right vs child's right, medicolegal & medical ethics aspects of this case drew me to it. As a parent of child with ASD (and having dealt with denial with his diagnosis) & as a clinician I had personal & professional interest in it.
Thank you all for all your points of view & detailed posts- I have learnt a lot & will reflect on it. It's disappointing when whole threads get deleted. Sometimes it's hard to discuss the issues raised without taking a side ( GOSH vs Parents)- and with all the media circus in public domain it's inevitable people will express opinions/ take sides.
I have decided it's time to bow out.
Back into hiding I go.

Mommytomylittlestars, Please do not go back into hiding x

X-posts sorry
Yes the dying part is scary but now I know I'm glad we were where we were, in PICU, with the right staff there as it is not a one person job, and at least reassured about adequate pain relief and management at the end. Deaths can be managed at home but this would be unusual with this level of ventilator and other support and it seems as though GOSH have bent over backwards to find an appropriate plan - they had a plan in place a few weeeks ago before this went back to court - that involves CG dying at home or in a hospice, but his needs and the situation and the property preclude this. Keeping him for a week at home, even with private care, would not be being done in his interests but in easing the suffering of the family and allowing them time with him at home. This is an ideal we'd all hope for but in this situation it would seem it is not right for the child.

i dint reach end of last thread sham its gon

where has it been announced that theyre suing gosh

My personal feeling is that one day, C & C are going to really regret some of the decisions they've made over the last few months. (There is no criticism intended of their actions in saying that).

I was 23 years old when my second baby was stillborn. One day I was in Mothercare buying baby vests, the next I was sat with a midwife discussing funeral plans. We were asked to make decisions that had never even been on our radar....do we want to hold our baby, dress them, bath them, do we want a post mortem, do we want to take our baby home for a bit, do we want photographs.....it was utterly overwhelming, and thank goodness we were guided into making decisions that were right for us all because we just weren't able to do it. I had absolute faith in the team looking after me, they'd done it all before and had the medical knowledge we didn't. My only "blame" was for myself, I didn't question the midwife who had cared for me, or my GP I'd seen days before with a UTI. I didn't blame the radiographer who'd not seen anything on scans, nor did I blame the consultant I'd seen in clinic twice. We had a PM on our son, although that was probably the hardest decision of the lot, and we had our darling baby with us for a few hours until his body started to change, then it felt right to let them take him from us.

What I suppose I'm clumsily trying to say is that shit happens in most of our lives at some point, my darling nan always used to say you have to know the worst to appreciate the best. But most importantly, if I go through it all in my mind, I have no regrets and that mainly is due to the hand held out to us from the medical team that we took. I truly wonder how C & C are going to feel about this in years to come. Peace of mind is so very important to us all and something I feel very blessed to have. Sending much love out to little Charlie tonight, the little forgotten soldier in the heart of this story and all the little angels (or stars, I have a strong feeling that's what my boy now is) up there waiting for him xx

The family have been offered both extubation at home or at hospital within a few hours of arrival, after which medics would leave and they would have time alone together.

The family are declining this as they are requesting a week at home with full ITU care there.

I'm also not sure where the idea of C&C suing GOSH has come from.

I think it was due to the parents' counsel's tone, and then the content of the statement given by a Connie and repeated by Chris outside the courts. Whilst they didn't mention further action, it is clear that they feel that had the treatment been carried out in January or even April, things would have turned out differently. They refuse to accept that his condition was as dire as the doctors at GOSH and other institutions feel it was at that time, or that the seizures that started in December had any detrimental effect on his brain. Whilst it might not be their intention, and they're obviously angry and emotionally and physically exhausted, it did read like the groundwork for a further claim. We will see what happens, but I can understand why people have read into it in the way they have.

I get so frustrated reading comments on the Daily Mirror etc. They're full of comments like, "why can't they just take the doors off/just hire a nurse/just let him go". I "just" want them to read the bloody statement from GOSH and they'll have all these questions answered, as if by magic.

When they originally stalled in mid-July I posted on another thread that it as as if they had been driven mad, and I think that's only becoming more apparent as time goes on. One day, very soon, their son is going to die and this merrygoround will stop. They are delaying the inevitable, and part of me thinks, "who can blame them?". But another big bit realises that this stalling just hurts them more in the long run. They are sacrificing their family's privacy and dignity and the reputation of a great hospital for the sake of a few more days each time, which are then eaten up by the next scheme, the next court case. I don't think they can see the wood for the trees tbh.

I get the feeling that this thread may be deleted also.

I suppose play by the rules and desist from saying anything about the parents at all is the key to keeping the thread open now.

I still cannot understand why dodgy posts are not deleted instead of deleting the entire thread, and subjecting those who have spent many hours contributing sensitively to the same treatment as the dodgy posters.

I don't really care anymore, except for the lovely posters who have made things so clear, and have shared their grief in similar circumstances.

I still have Joshua Rozenbergs twitter for tomorrow if it all goes South here again.

All the best to you lovely posters.

There was a tweet from today's proceedings saying that when Charlie's ventilation dislodged, it took 1 hour 55 minutes to replace it. In the hospital. With all the specialists there. The risks of moving are huge

MrGrumpy01, they are not receiving payment are they???they were doingit free,so he has nothing to lose surely?

Writer I am in tears at your post. It's heartbreaking. Thank you so much for all of the wonderful work you do. I cannot imagine how devastating it must be to be in a position where you have to leave your darling baby behind at a hospital.

A friend of mine lost her baby daughter shortly after birth last year and I know she found a cold cot hugely comforting as she was able to spend lots of time with her daughter once the ventilator had been switched off and she had passed.

In fairness to C&C, they must feel so strongly about Charlie passing away in the hospital where they have spent so many hours in total misery, I can understand why they want to move him for this final step. I hope they can come to a compromise on the hospice; GOSH and Francis J have been so accommodating to them, although I don't suppose understatement it seems like that to C&C.

I can't see any kind of legal action against GOSH coming to anything - they have done nothing but their best for Charlie

Private healthcare? Well this is not homecare as in domicillary home care that would be needed. Highly trained ICU nurses at least 2 peads on 8 hour shifts. All the equipment etc needed. No, not possible. I think for one this case is do high profile now no one would actually want to do it. It said in gosh statement neither NHS or private hospitals would take the case on. When you put it into the public eye you run the risk of becoming untouchable, everybody frightened they will get sued, discredited, or lose their jobs if anything went wrong. It is so so sad but Charlie has become untouchable.

CA post the most disgusting vitriol on their page. But here, if anyone dares to voice a less than identical view is reported.

I don't think some MN members attitudes are too dissimilar to the CA's attitude to be honest.

On CA if anyone dares say anything against the parents it's deleted.

And now the same thing is happening here.

Accusations have been thrown around that we're no better than the CA but in fact, it's the people reporting us that are akin to the CA in my opinion.