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

[blueskyinmarch]

Thanks for the new thread.

That Express article is a disgrace. There is nothing it at all to suggest the US Dr has said anything of the sort to Charlie's parents. They should be ashamed of themselves using this to get readers in.

[muckypup73]

Thanks for the thread venus and I agree with the opening post too.

[Doubledottvremote]

I hope the parents are having a fb break and can discuss things without pressure from the mob.

[jinglejanglejobs]

If Charlie is well enough for a trial of treatment to be of use, then still the doctor does not have ethical and FDA approval to do it. He's admitted that.


He's going to have to get that first before being able to proceed, and Charlie is not likely to have long enough for that to come through (it's taken months for me to have ethical approval granted for a study purely involving looking at patient records, never mind a first in human trial on a child with an extremely poor baseline).

[smilingmind]

If C&C have realised the reality of the situation and I feel for them.

[BeyondDrinksAndKnowsThings]

My previous summary posts might be handy to have near the top of the thread...?

...

Charlie has encephalomyopathic MDS

Dr mario tested this med on 11 patients with myopathic MDS
Test showed 10% chance of breathing without vent
11-56% chance of improved muscle function
50% chance of crossing bbb

And you gotta bear in mind that each of those % is cumulative
So the minimum chance of it working isn't 10%, it's 10x11x50 (and that is for a different condition )

Back of envelope calculation for me has it at 0.55%
That could be wrong though, maths is not my strong point

[taratill]

I agree that the Express headline is a disgrace when there is no substance behind it.

However I'm not surprised by it at all, there has been quite a lot of dubious reporting.

Really hoping that the Gard's are OK tonight as the meeting will not have been easy for Connie.

[TheWeeWitch]

Thanks Venus.

Thank you also to everyone on the thread who has wished my family well today. The kindness of MN is something to behold

[DarthMaiden]

Thanks @Venusflytwat

I've reported the duplicate to MNHQ and also put a post on it to direct everyone here.

[Alfieisnoisy]

Thank you for the new thread, I continue to keep Charlie's family in my thoughts, and of course Charlie himself,

[muckypup73]

TheWeeWitch, I hope you are bearing up ok luv xxx

[MoreProseccoNow]

Am I right in thinking that the NYC & Italian Dr's examined him today & that there will be a meeting which CY attends tomorrow, to discuss their findings & present them?

[ItsNachoCheese]

I hope tomorrow passes as smoothly as posssible for all concerned

[11122aa]

The reaction from Trump and Co will be horrendous if the doctor says publicly that he can treat him but the court's rightly say no.

[muckypup73]

11122aa, Trump has stepped back from it all, have you noticed he has been rather quiet? I wonder if hes been told off.

[GinSoakedTwitchyPony]

That's my understanding too Prosecco , can someone else confirm please?

[muckypup73]

ItsNachoCheese, I cannot imagine how Connie and Chris as feeling at this moment in time, my heart truly goes out too them

[stitchglitched]

Good opening post. I'd just like to add re the speculation at the end of the last thread, I noticed that Connie's fb had gone last night so it's not the case that she has done it as a result of the meeting.

Sorry to hear your sad news Weewitch

[TinselTwins]

Whatever the outcome, and whatever the reason, I think it's a good thing that the parents are taking a social media break!

Hopefully now they'll see that there is real life non judgemental support to be had, they don't have to "Feed the beast" of social media popularity contests to be "supported"

[11122aa]

Trump comes and goes with his views. He could always chirp up anytime.

[Sostenueto]

Hang on a minute folks don't assume anything. There could be multiple reasons why the parents fb been closed. It could well be that she had to insure nothing was posted because of meeting which I'm inclined to think is the case.

Worrying, well not worrying but strange a headline saying expert going to help then no more mention of him. Now going to look.

[redshoeblueshoe]

Alfie I agree, my thoughts are with Connie Chris and Charlie tonight

[DarthMaiden]

Where is the complaint thread against these threads?

I'm interested in the viewpoint.

[Writerwannabe83]

If the American doctor says he's willing to treat Charlie and he convinces GOSH doctors that it's worth a try then does it mean the Judge doesn't have to do anymore? After all he can't say no to it goubg ahead if the American doctor wants to try it and our doctors have acquiesced? Can he?

[stealtheatingtunnocks]

It's all so very, very sad. For everyone. Just sad, and a tragedy that plays out every day, in many families, in every community.



Life can be rough for people.