Charlie Gard (16) Future implications arising from case

[Puzzledandpissedoff]

If anyone wants to post, perhaps we could consider what implications today's case might have for others in future ... ?

I hope if they do use a hospice they're told not to disclose it's details. The last thing relatives of other patients in a hospice need is to be drawn into this pantomime during what will be a dreadful time in their lives.

CY has just shouted to GOSH barrister Katie Gollop "let us get what we want for once" on way out
Awful, awful, awful.

Is it any wonder they're unwilling to transfer to Charlie's home for extubation? When the judgement from yesterday says this?

Not for the first time the parents through their solicitors raised the prospect of criminal proceedings against the hospital and its staff.

What about the welfare of the other patients at the .Hospice?Cant believe they are being allowed to do this.

How exactly will they withdraw treatment? I assume it means foods/fluids, intubation?

They will just turn the ventilator off and remove the tube.

Threatened criminal proceedings are another damn good reason not to let them take him anywhere. Everything needs to take place in a monitored clinical environment with an ample bank of staff.

@catinb0ots and others - it isn't wrong to feel this way, many of us agree.

Rather than not letting medical staff in Puzzled, I'd think that the biggest risk would be that C&C might refuse to allow the ventilation process to be ended when the agreed time comes.

Based on events so far, I can fully understand where these doubts come from - and then what? GOSH (or somebody) is committed to providing ongoing care for Charlie at home while the case goes back to Court to hear "evidence" from more "experts". Going home to die is one thing, but if Charlie's death is to be prolonged, then he needs to stay where he can be properly cared for.

I have witnessed the ventilator tube being removed, the person dies pretty much instantly.

Venusflytwat all mothers want that

Writerwannabe83 So they don't NEED the ventilator to fit in the house? I know I'm likely being a bit thick. If they can get him home alive, he can still die at home? Or are C&C asking for time with him at home first?

Maybe GOSH should be completely honest about why they can transport to hospice and not home - if it's not due to the door size, obviously.

My concern with independent HCPs is, does it then make it difficult for them to say no to the parents as that's who are paying them. And how quick would the transfer of notes, care info etc needed to be handed over. That's not a quick process.

I think the parents want a team of their choosing (and paid for by them) to collect him at the hospital, and take him to a place of their choice for the length of time of their choice.

And they have found (or more likely been found by) a "palliative care expert" who is willing to do this.

Maryz I think you've probably nailed it.

cjt I think they want days with him at home

It's absolutely ridiculous. They threatened criminal proceedings. I certainly would not be going to their bloody house so they can call the police the second I extubated their child!

cjt110 Usually when you withdraw treatment in a baby/child we would spend time with the parents, help them to wash and dress their child in their preferred clothes, put nice sheets on the bed, a favourite toy, We remove all unnecessary medical equipment and turn off monitoring. We also offer hand and foot prints , a lock of hair and if they want to take photos, then that too. We do everything we can to make it as peaceful as possible so their memories are as good as they can be in that situation. The last thing we do is remove the breathing tube and either place the baby in its parents arms, or if its a larger child then we move them to an adult sized bed so parents can lie with their child and cuddle/kiss them.
There is no rush, we are very much guided by however little or much the parents want to be involved in the final cares.

"They will just turn the ventilator off and remove the tube."
Except, I believe, as mentioned earlier by those who know, trained staff need to be there in order to ensure that Charlie passes without pain.

officeshoes I am sorry to hear that. I guess it's one thing that you need experience of to understand, yet it's one you never wish to have

cjt C&C want Charlie at home, on the ventilator, for "a few days" before allowing treatment to be withdrawn.

meddie Thank you for explaining this. And you are very brave in what you do

And thank you to all for not shouting at me for not understanding.

Writerwannabe83 So they don't NEED the ventilator to fit in the house? I know I'm likely being a bit thick. If they can get him home alive, he can still die at home? Or are C&C asking for time with him at home first?

Apparently they want him kept alive in the home for a few days before the ventilator is switched off.

Short term ventilators and portable ventilators are small enough to enter houses but if they want Charlie ventilated for a few days at home they'd need a bigger/better ventilator which wouldn't fit into the house.

meddie MANY thanks for your account. That made me cry, it is such a caring and beautiful procedure that you have described. Thank you for sharing that with us.

Hi all,

Thanks for all of the reports about this thread.

As ever, we'll remove posts that break Talk Guidelines, and because this thread concerns an ongoing court case, please do also refrain from speculating about any elements of the case that aren't already in the public domain.

Do also remember that Mumsnet is primarily a source of support for parents; Charlie's parents are real people dealing with a horrendous situation - please do keep that in mind when you post.

Thanks all,
MNHQ

Thank you cjt. It was very calm and all concerned were in agreement, the staff were fantastic. I just can't get my head around all this, I have changed name several times on these threads as too identifying but just I don't know, horrified really.