Charlie Gard 20

[CremeFresh]

Don't know if anyone else has started a new thread .

Sorry x post!

thats ok thanks chatty

Thankfully someone sensible seems to have taken charge of the CA fb page and alot of the comments and articles seem to have disappeared this morning. I'm hoping that someone has the common sense to see that this won't help the family at all now, and close it or make it just so that the family can access it in future.

An American has posted on the charlie gard #charliesfight page

I got an email from the met police thanking me for reporting the twitter photo of the swastika flag on a photo of GOSH.
The tweet has now gone.

Ellie, a lot of Americans and Italians post on the pages, mostly seem to be very right wing or very religious.

When we lost our ds the consultant went to infant mortality meetings...
Where they discuss dying and deceased children under their care.
There are no names ..just a forum to discuss what has happened..what could have been done better..what lessons can be learned etc.
I am sure gosh will have similar meetings and they will include this cas

All your stories are making me cry. But not in a bad way, more as a recognition of the fact that others feel similarly. I loathe bouquets - hated having my home filled with the overbearing scent of mourning after my baby died. My colleagues though made me a bouquet of origami flowers which i thought was touching - partly that so many of them had thought about us so much, all the handmade not so perfect flowers, and the fact that it doesn't fade and doesn't have to be thrown out.

Hugs to everyone who's lost their babies. And I hope Chris and Connie eventually find some peace and some way to honour Charlie's memory that feels right to them.

Today 11:50 Aridane

stoprightnow - can you please stop taking a pop at Venus. She expressed a view slightly different to the collective wisdom here - and you would like to block her. This isn't the CA Facebook page!"

Indeed. If some posters are trying to debate in a reasonably careful way, trying to stifle other posters' views is unhelpful.

Today 11:53 Stoprightnowplease

Aridane, no she attacked me and said I had 'jovially' linked a thread about Wilf which was nasty.

Then another poster repeated the comment.

Completely unnecessary and twisting the situation.

Yes, I do wish that there was a block option on here, some people can be so horrible.

I seems mumsnet moderators do not agree with you. They have removed your response.

Which response? You have had many comments removed, so I am not really sure what you mean?

nina can you stop with causing trouble you dont contribute just make digs on everything

I read and I have commented much earlier on. There have been 20 threads to date, after all. When I see something that is unfair, I have a perfect right to comment.

But Nina your comments are always negative which is a shame, it seems like you don't want to contribute positively. Everyone can have a different pov of course but not to just appear to upset things and people.

your just goading your not mnhq let them sort it

Nateismine

Do you think the judicial process really looked after Charlie's interests? I feel that his 'suffering' should have been stopped a long time ago.

I also think that this should have been brought to a halt earlier - but that is with the benefit of hindsight. I understand why Connie and Chris wanted to feel that they had given Charlie every chance of life, and I think the judicial process always tried to accommodate this. Where the court's goodwill disadvantaged Charlie was in allowing another expert, and another, to be called into court who towards the end proved to be less and less credible. Personally I would have liked to see this brought to an end on the originally scheduled Friday immediately after the ECHR had rejected the parents' final legal appeal on the Tuesday. The writing was on the wall when the parents asked for that weekend to have more time with him and the court permitted the delay.

What Connie and Chris have gone through is terrifying for any parent and I have a lot of sympathy and compassion for them. But like others I wish they had had other people around them who could have given them gentle advice and support to understand that the situation couldn't get better. Maybe they did, but they were too distraught to listen.

I also think - based on people I know - that there will be feelings of guilt for Connie and Chris that they are trying to assuage. It was a millions to one chance that two people with the same faulty gene would go on to have a child together and it couldn't have been foreseen. But if they blame themselves for Charlie's condition, they will feel that they have to do everything they can to make him better.

Parents always feel responsible for their children's health and if there is a serious illness will often blame themselves and ask if there was something they did to cause it - did they have one small glass of wine too many in pregnancy, did they not clean the house well enough? For Chris and Connie they have that burden of knowing that their genes caused this, even though they couldn't have known beforehand.

My thoughts are with them today, and with all parents and children facing terrible illness.

I think it was a very difficult case - a David & Goliath case going both ways. That is, Connie & Chris as the 'David' with no legal aid / no fighting fund for legal costs, but a 'Goliath' in terms of social media presence and support. And with GOSH as 'Goliath' in terms of its teams of medical professionals and lawyers, but a 'David' in terms of being semi stifled in terms of public comment (although very quick to publish their 'position statements'),

The lesson the judge wanted GOSH to take away was considering mediation at a much much earlier stage before positions got irrevocably entrenched. By the time it was tried, it was too little, too late.

As legal processes went - whilst doubtless very long for a child either suffering pain or insensible to so much - there was only one appeal. That is, one appeal to the Court of Appeal on points of law. Leave to appeal to the Supreme Court (our highest court) was refused by the Court of Appeal and the Supreme Court itself. And the ECHR declined to hear the case.

The most recent court hearing were brought by GOSH, not by way of further 'appeal' by the parents.

I hope Connie and Chris and their family will have some high quality time - however brief - with Charlie in the hospice. And that the various last moments one poster spoke about so eloquently - eg hand and footprints being made, snippets of hair, a memory box - will give them some peace, and that Charlie's passing will be peaceful.

And that Connie and Chris will be able to use some of their extraordinary focus, fight and commitment to set up the foundation for similarly afflicted children using the funds raised.

Hi all,

Can we draw a line here and stop the derailing, please? If this turns into a bunfight, we'll remove the thread. We've reinstated the previously removed post as we think we were a wee bit hasty, sorry about that.

I think the process as I understand it is/was appropriately neutral and flexible- where there is genuinely new evidence then people should be able to bring it to be tested in court. (I'm not a lawyer so feel free not to read on )

So I'm not sure you could ever be able to rule out a case like this happening again even if there was more mediation.

Maybe you could reduce these cases if it was a condition that drs giving evidence about possible treatment in court had to have seen the patient first. But that seems a bit like a hammer to crack a nut and you can imagine it might rule out some cases which could be valid- like very time sensitive ones or ones where the experts are very far flung.

However it sounds like a combination of factors in this case may have brought 'new evidence' to court which perhaps in another case wouldn't have been attempted to be brought- because in another case more parental trust might have been placed in the medical or scientific consensus, in conventions about what doctors, scientists and patients do, and in the research, medical and ethical regulation around it all, than has been the case here.

As Devil put well, this particular couple may have felt particularly compelled to keep 'fighting' for their own, other very personal reasons.

Personally I was dismayed at the type of support and advice they will have received from self interested political and anti choice groups too. That seems like a terrible taking advantage of the parents and sadly I can't imagine any court process can ever screen out for that.

Just catching up .Well done smileingmind for reporting the hate post on GOSH's page..these eedjits use 'nazi' so flippantly and in totally trhe wrong context..yet they CA wanted Charlie to become a ''test subject?''...Say no more!

Nate the first ruling for withdrawing life support was in April. It has took this long because the parents kept on appealing and then the last fiasco with so called new evidence etc. It has been through 3 courts so the wait has been caused by the parents.

Rhodiolia
I was obviously being too cryptic. The American (MH) in question posted an update which has been shared on that page.

I think it would be only sensible for GOSH etc to review their procedures following this case, to see if there was anything they could have done better/differently. I would hope in such cases that looking at 'best practice' was something that was always active. As regards the court process, I cannot see anyone wanting to remove the parents right to appeal, or indeed the Guardian etc. But I think that going straight for the adversarial process might not always be the best course. Publicity -- in this case the family wanted it, but that need not always be so. And then we have the public interest aspect, and the fact that sometimes justice needs to be seen to be done, at least in terms of the final published judgements and statements of position.

The one aspect I'm actually quite ambivalent about is the tweeting from the court room aspect (leaving aside the american rleigious nutters who seem to have repeatedly videoed and photographed from the court room). As I understand it, court artists, for example, AREN'T allowed to sketch within the court room. So, do journalists in court make notes the old-fashioned way, or use electronic devices? If you can't sketch you can doodle.................

Okay, I think as great as it is from a news aspect to get an almost live reasonable precis from people like Joshua Rozenberg, you then have the spectator aspect, it becomes almost addictive. And does the tweeting have potential to interrupt the court process?

I think there might be room for improvement in terms of more mediation and less adversarial court room stuff. Legal aid for parents in such cases obviously, that needs to change ASAP, people in such a situation should not have to rely on the goodwill of the legal profession.
The guardian/hospital/family triumvirate system seems to have worked quite well, in terms of the patients needs being addressed. And given the kneejerk 'parents know best, how dare the state interfere' reaction, I think that the rights of the child and the way they have been upheld all along, we have a lot to be proud of in terms of our medical ethics set-up and our legal system. Damn sight better than what might go on in the US if Dr Hirano is anything to base a judgement on................

Great post somedyke

Some idiot on CA has posted a photo of GOSH's hospital entrance with a nazi flag filter over it..cannot see any way of reporting it,either.