Issues raised by the CG case 11

[Venusflytwat]

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):
http://www.gosh.nhs.uk/file/23611/download?token=aTPZchww

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

June 2017 Supreme Court decision:

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

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

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

Man with MND could also remove his ventilator but said he didn't want that.

I wouldn't wanna die awake and gasping for breath either

I wish they had been an you gov poll on this. When you have a parent who calls you an c word for arguring the GOSH viewpoint knowing what the country thinks is important.

I've been pondering this for such a long time and trying to put myself in their shoes and ask myself if I would do anything to keep my DDs with me.
Sadly I think not. Not because I am stronger, weaker, love my girls and more or less than C&C love their son.
But because my children are older. I could not bear to see my previously active, walking, talking, dancing and prancing daughters reduced to the state that Charlie is sadly in.
But maybe that's where C&C find the sheer dogged determination to hold on to him come hell or high water. Maybe they want a chance to see the kind of boy their child might have become. They don't know that thunder frightens him or if he'd feel that tingle of excitement at the first rumble and sit glued to the window waiting for the first lightning strike to light up the sky. Or what his laughter would sound like.
I wonder if they are fighting just long enough to see a glimmer of the child he would have become had he not been so unfortunate.
This is the only reasoning I can come to as to why they are fighting so very hard for the smallest of improvements, just to glimpse a sight of what might have been

Granny People have come on these threads and offered opposing views to the ones the majority on here hold. I would suggest most people see the dichotomy within the situation and the moral/ethical dilemma. I don't think anyone would disagree that treatment should go ahead IF Charlie could be be expected to lead a good quality life thereafter. No-one wants any parent to suffer the death of their child. But that does not seem to be the case here.

You have completely missed the point. People on here were "outraged" at the Auschwitz comments and then went on to compare people wanting Charlie to get the treatment to Mengele. Can you see that is a pot kettle and black situation?

Whatever the rights and wrongs of Charlie receiving experimental treatment it is nothing like Mengele's experiments. Then someone saying it wasn't aimed at the doctor as he hasn't agreed to treat Charlie, well he did originally didn't he, it was just as experimental then.

This case is somewhat different though. I think given that the case is deciding whether Charlie is for treatment or not, they'll be put in a position where they do have to resuscitate while the case is pending?

That's a good point. With children the consultant has a discussion with the parents about what would be appropriate should something happen. They might agree for bagging, or just oxygen or whichever. Obviously they don't always agree, and it gets reviewed over time. Any children I've come cross like Charlie tend to have a plan in place personal to them. It was something I was just considering.

Sostenueto, Yes, I was privileged to have known a person who also happened to have MND..He was extremely well looked after, at home and at odd times in a Hospice and no way was he ever wanting euthanasia, not even at the very end when all he could do was whisper.
The staff who care for people who are desperately ill do their level best,
A friend used to work at a well known specialist unit [Not GOSH] where people needed intensive nursing care/physio/surgery for long periods, and the staff really were upset if a patient died despite all their best efforts.
The staff are dedicated, from the most senior to the health care assistants in my experience, and the last thing they want to do is lose a patient, much less want to do harm as the more unhinged members of CA suggest.

I do feel desperately sad for the parents though. just wish they hadn't coped with their grief by doing this legal wrangling stuff.

Sorry for the daily mail link - Connie has made a statement

www.dailymail.co.uk/news/article-4707554/Charlie-Gard-s-mother-thanks-medics-flew-him.html

Tinseltwins..Privacy during puberty and onwards is so important.

Did you hear the Radio4 programme on Saturday 15th July where a mother called 'Penny' described how difficult it was for her profoundly disabled son since his hormones kicked in?
It is hard enough when independent teens hit puberty, but for people who have to be reliant on care all the time ..it must be unbearably frustrating for them at times.

Hi all,

We've removed a few posts talking about a poster that's not on the thread as we don't think it's quite cricket - so could we ask folks to avoid doing this please?

The daily fail link is not saying anything. There wont be anymopre tests as they have both left the country,so how can that be?

I thought CYs statement sounded very balanced, although it doesn't sound like "her" given her previous interviews and statements it reads like it was carefully written for her by a sensible professional.

Which is good, she's being well advised now I hope

I hope that what the statement says is true, and whatever the outcome now , she is satisfied that the conclusion has been justly reached.

God love her

The daily fail link is not saying anything. There wont be anymopre tests as they have both left the country,so how can that be?

It could be minor things, awaiting lab results or something that they don't need to be there for?

Thank you for the link, FancyThat.
Interesting that CY says that they "feel satisfied he is not suffering or in any pain."

Interesting that CY says that they "feel satisfied he is not suffering or in any pain.

Although she's always said that, I wonder if saying that now means that he has been tested for stimulus to pain, and he doesn't show any response to pain, which would indicate that his brain is beyond recovery?

Exactly, Tinsel.

Thanks, KatherineMN. That makes me think, though, that talking about another family who aren't here either is equally not cricket, however much they've sought publicity, so I'll bow out.

It would seem from what CY says in that article that the Sunday emergency directions hearing was at least in part about the EEG. The US dr wanted 30 minute long EEG, Gosh insisted on a long one, I'd think to give a better picture of how much seizure activity is going on? It looks like the judge ordered it so it was against parental wishes.

I think the statement was made on her behalf

Reading between the lines it seems to be pre-emting criticism aimed at her, it basically says to me "we don't want you to judge us any more" - either way.

I think/hope this is the last we hear from them, the whole statement read as very "conclusive", as in now they have said all that they needed to say. Hopefully so that now they can try to have some privacy for whatever comes next.

What I means is that I think that statement is so cleverly written, that it can just be repeated no matter what outcome comes next, and they won't need to make any further statement as this statement says it all really, whatever way it goes now. It'll still apply to any result that comes next.

Which is fantastic news as it shows they have someone sensible looking after them now.

The US doctor may well have ordered tests still to be done or currently in process at GOSH with the results to be shared with/faxed/emailed etc to him. H