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.

To perceive extubation after the transfer as brutal also makes plain that Armstrong's party are not accepting of or willing for that extubation to happen. Again as has been discussed on many of these threads by professionals who have done it, those posters mention the necessity that the family of the patient are wholly aware and supportive that the transfer is for extubation.

If this is not clear and a palliative transfer is made to a hospice followed by people becoming extremely distressed and refusing, then a very vulnerable child is in an extremely difficult and potentially dangerous situation without the right equipment or professionals to be safely cared for.

Very well said DustinGee

Well if this thread gets pulled I'd like to say thank-you to the people who have shared such very sad stories

If a transfer team would take to a hospice then surely it's possible and possibly better to go home instead?
I get that a week is not reasonable but I think moving out of the hospital is right. It will have been a place of horrid memories and hostile feelings.
I do think parents should be taken into account.

Brutality is often associated with cruelty so I'm just wondering why they think it's cruel for him to go to a hospice

I thought Armstrong suggested the "brutality" would be towards the parents rather than Charlie, should he be transferred to a hospice? It was mentioned on the censored thread that the transfer team would normally expect to withdraw the life support, which would mean it being done quite quickly after Charlie arrived and that he'd pass swiftly once there

If I've understood correctly, it was this which the parents found unacceptable

If a transfer team would take to a hospice then surely it's possible and possibly better to go home instead?

Which GOSH have offered but C&C refused because they won't agree to the ventilator being switched off following the transfer.

they will have to screen for individuals who, either because of mental illness or attention seeking, will claim expertise they don't have.

And how will they do that? They don't have the expertise to know exactly what qualifications are needed, or to ensure that all the necessary paperwork is in place. How long will it all take?

I know there was some reference to them having a palliative care expert available, but even that person, whoever it is, can't check the credentials of highly specialised doctors and nurses in a few hours.

OMG - this is all just so sad and awful and tragic and farcical now actually.

I've gone from being in tears earlier tonight to mild nervous hysteria at just how horrified and incredulous DH is at each new proposed suggestion by the parents.

Hive I think in GOSH's statement and during the court hearing, there were mentions of stairs, corners, difficulty with equipment and the child would need to be hand 'bagged' while taken there. There is a risk of the tube coming out accidentally. Essentially the judge's words by the end of the session was that unless something fairly significant is offered by tomorrow, home cannot be a safe option. He has to ensure that the child isn't left enduring distress through a problem occurring.

Sorry to ask - but what happened? I've been on 1-16 in varying degrees - was it the nature of debate from existing posters or an influx that caused the problem. I get it's still the 'parent blaming' (which i think means any criticism?)?

If a transfer team would take to a hospice then surely it's possible and possibly better to go home instead?
I get that a week is not reasonable but I think moving out of the hospital is right. It will have been a place of horrid memories and hostile feelings. I do think parents should be taken into account.
GOSH are saying the ventilator will not go through the front door of the house and parents want him ventilated at home for a week which GOSH say they are unable to facilitate as they could not find any clinicians in the UK willing to do it.

dustin I agree 100%! Thank you for such an accurate summary of what lots of us are feeling re the deletion.

I also worry about what would happen if he does go to hospice and the time comes to extubate... C and C are not behaving rationally at the moment imo, which is understandable given their ongoing stress. I also worry about potential impact on other patients in the hospice.
In addition Paediatric hospice spaces are in really, really short supply, we can't allow another place being blocked for months on end while the parents come up with more arguments about why it's not time yet

I thought that the Judge had said, after hearing Butler-Cole's testimony during today's hearing about the risks of trying to provide home ICU, that the only choice available now for the parents to decide was between hospital or hospice care?

From Joshua Rozenberg's twitter

5h
Armstrong: we want to continue our discussions.
Judge: only options are hospital and hospice.

The thing is, it's just not going to happen. It's pointless. The judge will make an order tomorrow and I think he will specify the hospital. This poor wee soul deserves dignity now

Thanks everyone for clearing up the brutality confusion for me. I think I understand now that it would be brutal on the parents because they'd be in an environment and amongst staff that they don't know during what will be the worst time of their life which I can understand completely.

Not caught up yet but wanted to say to Jane and Leghoul and others who have been ripped apart by the agony of terminating care - I am so sorry and please don't ever think that you did not fight hard enough. You did what you felt you needed to do.

I have also found the ethical and medico-legal issues interesting and feel likewise that it is a pity that the whole thread was pulled rather than select posts. The ability to discuss implications was important I felt.

I just wanted to say this in case I did not get the opportunity if this thread is pulled.

Agree hive but parents won't accept that. They want a week of ICU care at home prior to life support being withdrawn which as GOSH have said is not possible.

GOSH have concerns about the actual home - size and accessibility primarily. If the team took him there, it would only be to withdraw support very soon as well.

I completely disagree that the parents wishes should have primacy. The patient is the priority. Moving him will be very difficult for him.

I think the best that can be done now is a peaceful room or perhaps even the garden on the roof that they used before, clearly that was accessible with the vent, and then compassionate arrangements for them to take his body home with them for a time. All that will require a will to achieve a good death from the palliative care team that I'm sure is there and acceptance from the parents that that is what they are aiming for. It's the latter that's the problem.

The deletion message gives info about why the thread was deleted, unbuckle. I don't think we should be getting into that here

This whole thing is so unbelievably tragic. Poor Charlie, poor parents, poor staff, there are no winners here.

DustinGee Well argued, and valid. I'm just not used to seeing censorship on other forums, seems 'the finger of judgment' hovers over the ''report'' button on here a lot from members who have been active a long time.
By the way, popped over to piston heads and they were on to tinsel's ''mansplaining comment [Piston heads user posted very clearly, with analogy and diagrams about why Charlie's type of Mitochondrial depletion is so severe.[.he also thought the Hirano treatment would be futile long before the Jugment]

The judge will make an order tomorrow and I think he will specify the hospital.

I agree. He's probably hoping that by allowing C&C time to consider things overnight they will reach a decision on their own instead of him having to be the "bad guy" and say Charlie must die in the hospital. The parents have put JR in a really horrible position because he will be the one receiving the backlash when he 'forces' Charlie to die in the last place his parents want him to be. It's incredibly unfair to him.

It is very hard as human beings, as parents, as those who have also suffered significant losses to not be stirred by what is happening. MNHQ has asked us to be more careful In what we say and I hope we can do what they ask as there is so much of value in these discussions. I feel that their objections lie in threads that can be seen as parent blaming rather than discussion, or possibly parent blaming and discussion if that makes sense. I am sure some of my posts could be seen as parent blaming so I also will have to think before I write.
I do agree that some posts, especially in AIBU, can be much more hardline and critical than any of ours have been but I guess they are seeing this as a very sensitive topic.
IMO the last thread got derailed towards the end when emotions were already running high and some people came on with the intention of causing trouble.
Of course everyone is entitled to their opinion and if they had wished to engage in the discussion I don't believe anyone would have had any objection to that. However that did not seem to be their intention.
I did thing that ignoring these posters might be a good tactic but this would not prevent them from reporting posts.
I hope we can keep these threads going. If not a FB group has been suggested, although some are not happy with this for very good reasons. I don't know what other options there are. If FB is thought of as a reasonable alternative then possibly a private group should be set up sooner rather than later with a meaningless, boring name that means no one not in the know will be tempted to ask to join. If so it doesn't have to be used and can be deleted if no longer needed.
My family have a private group where we discuss things only relevant to us. It has been active for around three years now and we have never had any problems with security.
Headmistress, who also was never even an ink monitor, signing off.