Charlie Gard 20

[CremeFresh]

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

Sorry wrong thread.

Yes I think points well made by Shark, Gold and Maryz.
I came across this measured analysis from a Canadian
www.macleans.ca/opinion/the-charlie-gard-story-reveals-what-we-wont-accept-about-medicine/
Hope the link works!

Antiopia My words are inadequate- I hope you find support and comfort.

The Charlie Gard threads on MN are easily the best, discovered them maybe two weeks ago, and the info and personal stories people have contributed are so deeply poignant.

This is how I feel too. So many measured, reasoned and well thought out responses and truly touching accounts from families and HCPs.

Laura Gard has posted her address for CA to post cards too, I really hope that after that it all stops and the family are allowed to grieve in private.

I think you're right unfortunately. I don't want to speculate as it's not the right time but I do think everything will be very public.

I really hope the staff get the support they need. We can be very poor at looking after our own and debriefing.

I so so hope that they don't devote their lives to negative pursuits like legal action that would be just doubly sad.

Agree re the staff frogs they must be feeling shattered and so low at the moment.

I think the staff of the hospital will continue to do their jobs, professionally. They have many patients to care for.

Shark, Gold, Maryz yes. What a privilege to read your posts.

There have been so many people in the course of these threads who have given us so much information, enabling me certainly to have a better understanding of the whole, in so many ways, from the logistics of moving someone in icu, to ethics, to our attitude to children as laid down by law, to sm, and so much more. Thank you all.

I know I've shared this before but it really is an excellent overview of the medical and legal aspects of Charlie's case and well worth a rad..

reaction.life/charlie-gard-facts/

I would like to think that this case sparks a wider debate about the acceptance of death and how to deal with end of life issues. From what I've seen the public are moving further away from coping with death and being willing and able to face this difficult part of the human experience.

On the one hand we have the people who are desperately fighting for the right to end their own suffering in a timely and humane manner and on the other, people who are fighting just as hard to prolong the lives of the terminally ill as they are unable to accept the inevitable. These terminally ill people are frequently suffering and being made to continue in this way as their loved ones are unable to let them go.

As a society, we talk about and prepare endlessly for the healthy baby that hopefully results from a pregnancy, but are unable to face what inevitably comes at the other end of the life continuum. People just don't want to think about it, but a life that is able to end without fear, pain or distress is an achievement to feel good about and just as important as a successful birth imo. I know I'm biased because I enjoy being involved in end of life care and I do accept the pain that results from losing someone, but we need to find a way of reconnecting with death and learning how to handle these issues.

Laura Gard has posted her address for CA to post cards too, I really hope that after that it all stops and the family are allowed to grieve in private It looked like some sort of delivery service/office/business address to me, at least I hope it was!

I think the staff of the hospital will continue to do their jobs, professionally. They have many patients to care for.

Of course they will. But they'll also be completely mentally and emotionally drained.

People REALLY dont understand how medicine OR statistics work:

e.g. "doctors gave my child a 1% chance of survival, and she is still alive and healthy X years on, so doctors can be wrong"

Um, no, that doesn't mean the doctors were wrong, that's not what that means at all!

What do you think it means that DrH has made a statment saying that he's relinquished all financial interests in the treatment, and also seems to not be responding to other parents trying to enquire about it for their children?

I should think DrH has rued the day he responded to any contacts about individual patients tbh and has decided never to go there again.

i hate sticking up for our pm but shes getting a roasting for not stepping in i wish people wouldnt comment on our laws/government-its getting ridiculous
The hysteria from the army is so incoherent, on the one hand the government killed him and steals our rights, on the otherhand our politicians are criticised for NOT "stepping in" - and there is absolutely no discussion whatsoever within the CA platforms about how these are mutually exclusive "Facts"

I'm glad that people are beginning to see how biased BBC news is and always has been!
BBC news is often slower to report emerging news stories, MN in general has taken the stance that this is because they "Fact check" but I've always disagreed, IMO it is because takes less time to report police statements "raw" as they come in than it does to put a spin on things!

wee witch

Thank you for posting that extract from The Times. I posted at the end of the previous thread, querying the role of C&G's PR person, specifically whether she was acting pro bono, like the lawyers.

There's been a lot of criticism of 'the media circus', and some of it is deserved, but we need to remember that it was the family who went public in the first place. They wanted maximum publicity for the fund-raising appeal. It's a bit like the Diana story, though. She encouraged the press in the first place and then ultimately regretted it. Riding the tiger. The same applies to the 'support' of CA. Useful at the beginning but a liability later on.

I'm glad to see C&G's repudiation of the ex UKIP candidate for his 'cynical' remarks about GOSH. However much I disagreed with their decisions, I do think they have conducted themselves with dignity in an impossible situation and I hope that in time they will be able to reconcile their feelings about the hospital and the judiciary.

This morning it is annoying me when they keep saying he was born perfectly healthy which is just not true. I think it would help more people understand the situation if they explained that he was ill from conception/birth (in a respectful way).

I'm sorry that the terrible situation of Charlie and his parents was jumped on by people with horrible twisted agendas and people who want to help but who are not very well educated (and sometimes downright dim) and like Maryz said the hypocrisy of the anti choice brigade who oppose the very medical advances that might help couples affected by this family of illnesses is astounding.

I reported those posts on Facebook too. I found that if you hide the post you want to report, it comes up with an option to report it then although the FB reporting system is woefully inadequate at the best of times and offensive posts usually have to be reported numerous times before they take any action.

Re the media, it was columnists I most took issue with. Sarah Vine and Katy Hopkins in the Mail. I'm also surprised that the Guardian stopped referring to Charlie being 'terminally' ill, and changed it to 'critically' ill, which is surely very different, implying that there was a chance he could survive.

It was also very misleading to keep describing patients treated by Hirano as suffering from a 'similar' condition, when obviously the involvement of the brain - encephalopathic - in Charlie's case meant it was far more serious and, after the series of epileptic fits, there was no question of his ever being able to go home or 'ride a bike'. Interviewing the American parent whose son was able to sit in an electric wheelchair and follow commmands was grossly misleading.

Posting her address is perhaps not the best idea. Maybe they should have posted the spokeswomen official address. She could also deal with any hatemail the family will receive from staunch pro-lifers who are angry at the family for giving up.

It's not her address, it's a service one.

On a slightly different note I found this video of this other kid Art Estopinan Jr from 2013.
m.youtube.com/watch?v=oiy2BdEu-zQ
Looking at the video it is obvious that,
-this kid was never as poorly as CG at CG's age-they had just started noticing symptoms. I am not sure if he was on vent at the begining of treatment- there are pictures with him in hospital as a baby/toddler with no vent.
-'99% of Dr's in US said there was nothing to be done'- yet NHS was accused of 'playing god' / 'GOSH holding CG hostage' etc by Americans
-When NBT was tried on this kid it was at a 'clinical trail stage', not purely 'experimental' with 'theoretic chances' as it was would have been for CG- the court documents mention it is not the 'exactly' the same drug as these trials, it is a slightly different molecule.

Just a bit irritated that MS media have never bothered to report all the facts.

I feel very sad for the parents whose ordeal was prolonged by this glimmer of hope and they still lost thier precious baby. And now have to live with 'what ifs' & anger & bitterness towards the 'system' they feel 'denied us the chance'.

I am sure Dr H will also reflect on his role in all this though may not come out with any public statements.

@Thymeout

Exactly- when I started my post with 'slightly different note' I had not seen your post- I agree it's not the same clinically.

On Sky news, just now, they once again said 'Charlie was born a perfectly healthy baby', all they need to do, to make the narrative truthful, is insert the word 'apparently'. Surely they understand this? Why is the reporting so irresponsible and sloppy? Do they not understand how willfully they are misleading vulnerable people? What people do with information that they believe?
So much about this had made me so upset and angry, but it's the intelligent and powerful exploiting and misleading the disempowered and vulnerable, above all that I'd like to see widely exposed and debated. And thank god for mumsnet, I really don't know how I would have processed this story without the mumsnet threads.