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 ... ?

Oh dear. Decisions, however hard they may be, need to be made.

There were two mothers on Radio 2 earlier that had had to take a decision on the death of their children - the mum I mentioned earlier and another who had lost 2 daughters 30 years ago to a similar genetic condition to Charlie's. Both were asked what they'd say to the Gard's right now. Both said "Let him go."

I know they are lost in their own grief, but I pray (and I'm not a particularly religious person) that they quickly see that none of this will help. Nothing will prevent him from dying, there are no miracles, only acceptance and in time, I hope, peace.

I have tried very hard to be fair and consider both sides of this situation.
However I believe that this is nothing to do with Charlie's best interests and quite possibly a delaying tactic.

I am actually disgusted by this charade. I KNOW they are driven mad by grief etc, but where are their families, the people who could say "look, it's time to let go, be kind, be brave, but above all think of Charlie"?

With respect, nina2b, Connie stated she wanted the court details public, therefore it can be discussed. IMO.

I feel like crying for the poor baby, and agree with the PP who said that fighting GOSH/ the system has become ingrained now. Why should poor Charlie be kept suffering until his birthday? Not to mention the fact that celebrating his birthday in the midst of all this hardly seems appropriate.

I am willing to bet that even now at east one screenwriter will be working on a fictionalised script. Maybe doing research with medical staff to understand such experiences from their point of view. What's it like dealing with difficult parents, not being able to answer back, dealing with all the domestic fall out associated with stress?

The story will be heavily fictionalised, different age for the child, different condition, different gender, another part of the country, but its origins will be implicit. Everyone's point of view can be considered - parents, medical staff, other parents, the legal teams, enabling or dissenting family members, hangers on, exploiters... It will be libel proof and beyond the control of anyone but its makers.

I could be very illuminating and very educational.

All this "discussion" is intrusive. IMO

Connie was asked if she wanted this current issue kept from the public and she said no.

If she's happy for people to know the ins and outs of their actions then they need to accept people will have opinions and discuss them.

I read somewhere (think it was the Daily Mail article) that the parents would pay for private drs / nurse to provide the at home care.

Have to say is this even practical or available? Charlie needs highly specialist care, not something a standard doctor / nurse could offer surely? Also duty of care from GOSH perspective, can they be assured of Charlie's care if handing over to a third party?

It just opens Pandora's box IMO.

Gosh is the only home Charlie has had in 9 months. Of course they wanted it public to defile GOSH even more. Now we have another expert pulled out of the hat. What's this one DR Death? And now we also know why they dropped the case to get yet more time, which they would not have got in court on Monday. This is really now shown as all about the parents, no thought in prolonging Charlie's painful existence at all.

GOSH are world class experts, they have moved many children to palliative care, they will have the knowledge, expertise and contacts established for palliative care pathways in hospital, at home or in a hospice. A transfer to palliative care is not new for them and sadly, will be something that they frequently do.

For those of you on Facebook, have a look at the Wellchild notanurse_but campaign that's running to gain a small insight into what it would be like taking a child with complex needs home. It's not something that can be done quickly, it requires meticulous planning and full involvement from the parents. This is where it all breaks down - how many more "just a couple of days" do they get? They said yesterday that they never prolonged Charlies life for their own benefit, but now it seems that they are :(

When the parents stop making a public circus out of their son's last days, discussions would be intrusive. IMO.

Thanks. For link Ellie

Anyone that thinks this is intrusive, please don't join in. It's laughable given that this was introduced to world wide media by the parents and is being discussed on every forum available that a mumsnet thread is 'intrusive'.

Good old virtue signalling again.

I am sure nina2b that this is being discussed in many, many circles in a far less balanced way.
This thread, and previous threads, are a voice of reason.

It certainly looks that way Maryz. A cynical person could even imagine the photos of his birthday party.

A birthday party which, of course, should Charlie still be alive then it would be perfectly normal and reasonable to have - it's just the publicity/media side of things that could be horrendous.

I'm not sure a hospice will allow anyone to be admitted for continuing ventilation either - not just Charlie. Hospice places are also like gold dust, the reality is that they are there for end of life care - not to possibly become part of an increasingly drawn out media circus & cycle of delays.

CY wants it out there, specifically said so in court today.
A life, and sadly a death, played out under the glare of public opinion.
But this is what CY wants...otherwise she could have had a private hearing.

Where is the evidence that this is in Charlie's best interests?

Sorry but I'm with parents 100%. That is my gut feeling. I understand that the parents are madddened by grief. Who wouldn't be?
I speak as someone who gives money every month to GOSH.

I saw someone on Twitter comment that it had taken hours to move their sick ventilated child from his hospital ward to an ambulance ready to transfer to another hospital. It's just not as simple as sticking him on a trolley and wheeling him off down the corridor.

There is also no mention of or thought for the child's experience of being transported and taken to a strange place, that's not even being weighed up in the discussion with the judge. For a deaf/blind child who was otherwise fit and well this would be extremely traumatic and difficult. He's not a fecking doll. This should be about the rights and the safeguarding of the child.

In response to the tweet about the ventilator not going through the door, somebody onTwitter has suggested a cherry picker to the window

There is no evidence it is in his best interests

Plenty of parents dexra have been 'maddened by grief' and not done this

Friendlysnake I agree with everything you say. I had to step away from these threads because I was unable to express my real opinion[ without it being deleted.