Charlie Gard 13

[muckypup73]

This is a thread following the legal and ethical questions raised by the recent court case involving Charlie Gard.

Please could we refrain from insulting or otherwise "bashing" his parents. It isn't in the spirit of Mumsnet and will get the threads removed.

Please could we also remember that at the heart of this case is a terminally ill baby and his heartbroken parents. There are those participating in and watching this thread for whom these issues are painful. Please let's try and be mindful of them when we post. This isn't a place for name calling or trivialising the very real pain they feel. Many parents of severely disabled children are on here.

Lastly, here are some hopefully useful reference points of facts surrounding the case.

13 July GOSH position statement on latest hearing (includes update on Charlie's condition):
www.gosh.nhs.uk/file/23611/download?token=aTPZchww

7 July GOSH statement on Charlie:
www.gosh.nhs.uk/news/latest-press-releases/latest-statement-charlie-gard

June 2017 Supreme Court decision:
www.youtube.com/watch?v=P6rPmvGlNhA&app=desktop

May 2017 Court of Appeal Decision:
www.bailii.org/ew/cases/EWCA/Civ/2017/410.html

April 2017 High Court Decision:
www.bailii.org/ew/cases/EWHC/Fam/2017/972.html

GOSH FAQ page on Charlie:
www.gosh.nhs.uk/frequently-asked-questions-about-charlie-gard-court-case

if Charlie were able to define quality of life, I think it would probably include at the very least: being able to understand/communicate; not being reliant on a machine to breathe; not spending the rest of his life in hospital. Plus of course being able to laugh, feel joy, love.

But he can't, his parents won't accept the - what I think is - inevitable, hence the involvement of courts, guardians etc.

And in terms of quality of life I couldnt accept what I put as the bare minimum above, so why would loving parents put their child in that position?

I see what you mean annandale
"….but he's blind and deaf" sounds disablist, lots of blind/deaf children interact with the world and enjoy the world and bring joy TO the world etc
I think given that it's so high profile we sometimes assume that all readers know the context which is:
"..but he's blind and deaf…………AND in multi organ failure despite life support and unable to move or swallow or interact in any other way that other blind/deaf children can"

Life for life's sake zzzz is not a good philosophy. I am terminal. I do not want any more treatment. Charlie is terminal he cannot voice his choice. The court does that for him.

I think you can have quality of life:
If you can't hear or see but you can taste, feel, reach out
If you can't move but you can hear, see, experience

but not if you can't see, eat, hear, reach, feel, or use any of your senses at all in either direction (to recieve stimulation or to give communication)

You can do without being able to use one or several senses, so long as you can still use other senses.

What senses can Charlie utilise? apparently he's not in any discomfort even though he's having regular suctioning, so he probably can't even feel touch!

I feel like this could go on forever. Poor Charlie

It does feel that way. Just more stalling all the time. However, to put it bluntly, that child is very likely to die soon either on or off the vent.

Not sure that will be the end of it though, not as far as the rabid CA are concerned.

I've spent hours wading through peoples medical records - both in GP land and in secondary care. Some are very, very long. Charlie's file by now would be very large. It is not an easy task "just" to give parents a copy or "just" give them updates every day - this is a child who will be constantly monitored so those updates could be copious.

I would hazard a guess that the parents have been given a summary of the file and that is what has lead to them thinking that they are being denied access to the whole thing.

zzzzz I see what you're saying, however I think that GOSH must be pretty certain that Charlie has NO quality of life.
They look after profoundly disabled children, and I think if there were any indication that charlie was able to experience any kind of joy or happiness through any kind of stimulus, we wouldn't be here now.
However, I

As GOSH said in their position statement, they described his (possible) position as 'beyond experience' and he has a terminal illness.

Those two words said it for me...............Unless you can bring him back to an experience that isn't just pain, then let him go.

I have seen some posts on some threads which do appear disablist because they don't list all the things that the baby can't do it really ISN'T about making more comprehensive lists of deficits.

another poster quoted a SN mum who told her DC that it's what you can do that matters

What can charlie do/feel/experience?

You can be on a ventilator and have a quality of life. I have cared for children on long term ventilation. logistically its difficult but they can and do have a quality of life. But the difference is they are stable and not dying.In some way they can interact with the world around them.
Charlie is dying, his disease is terminal and ultimately fatal. He either has no awareness of his existence or he is unable to show he does. the latter option being the most cruel to bare.

Zzzz you are accusing other people of being disabilist. People who have had as much, or more experience of caring for a terminally ill child as you have. We are allowed to have our own opinions. You are NOT free to accuse people who don't share yours as being disabilist without being challenged.

Today's notes will make no difference to tests carried out and agreed consensus by world leading experts on Charlie's condition. The judge is not interested if Charlie runs a temperature today or doesn't have a poo. C&c are really being advised terribly.

Checking in and catching up.

I can't believe how fast these threads move.

ITs to do with management of the situation sostenuto - being pragmatic. So you can hand over 10 pages, look reasonable and move onto the important submissions. Akterbatyvexus tou spend half a day on your feet arguing the toss and ti shut everyone up, thecjudge evebtuakky orders that they are copied for everyone. Waste of time

Oh yes zzzz forgot to mention I have been registered disabled for 10 years but I don't 'think' of myself as disabled. Perhaps I'm discriminating against myself if I say that?. The judge will make the right decision for Charlie, not for His parents, but for charlie.

Right no bunfights please or I should say bumfight. Anyone here a kardashian? (Lol)

I think there's a huge difference between being disabled & being terminally ill.

Are we saying that those with terminal illnesses should be ventilated & kept alive artificially instead of having end-of-life care? Without consent?

Thankfully Charlie has a guardian who will advocate for him, and we have courts & the legal process.

Gobbolina got it!

So the doctors are disablist by bringing this case to court by that rational...

*rationale

I'm not "accusing" anyone of anything confused. I am simply saying that the child's perceived abilities (to breathe, to feel, to love, to communicate) are profoundly important to the judgements being made. They are disableist, how could they not be?

Okay, how do you think the decision should be made if the childs ability to experience shouldn't be discussed?

Is it disablist to acknowledge illnesses and disabilities?

On disabalism.

I think many posters have expressed a position that is the opposite of discrimination against a tiny human becuase he has profound disabilities.

People seem in the main to support the concept of parental responsibilities and children's rights, as opposed to parents have right sover their children. They are clearly NOT making an exception along the lines of " unless your child is profoundly disabled and very very ill, in which case sod it, you can have rights over him and his don't matter any more".

People in general, not just here, aren't usually terribly enthusiastic about children without disabilities being subjected to experimental treatment unless there is a clear prospect of benefit for the child at the sharp end. What comes accross quite strongly on these threads is that the principle always holds true for most posters. In the sense that they apply the same ethics and principles to proposed experimental treatment of a disabled child.

If they were making an exception in a disabled child's case, then that would smack of a discriminatory stance. But they are saying the exact opposite.