Charlie Gard 20

[CremeFresh]

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

Sorry a bit pissed and emosh

Fake - I will try and answer your question. I am a medic but this is not my area of expertise being very specialised and someone else may be able to answer your question better than me but in essence the mitochondria in the cells also contain DNA as well as the nucleus. The mitochondria are important for releasing energy from nutrients that we take in and allowing chemical reactions in the body to take place and yield energy for everything we do.

Charlie had a severe form of mitochondrial depletion which meant that he had a fault in enzymes involved in making the mitochondrial DNA. He will have had enough DNA working properly when he was born but once he started growing (and as we grow cells divide and we make copies of and also repair our DNA) well he just was not able to make more mitochondrial DNA to keep up and supply energy. This shows early in areas that need a lot of energy to work such as muscles and the brain.
This would explain why he seemed healthy at first but deteriorated so quickly poor Charlie.
I hope I have managed to explain and that my explanation stands scrutiny by those more specialised than me!

I think there were signs that he was not growing/developing when he was 2 weeks old somethng like not feeding normally? Poor little mite, he didn't have a chance, did he?

Maryz
Sadly, Charlie was born too soon.

No Jux sadly he didn't. I hope research may yield a solution. Dr Hinaro as we know is looking at nucleosides but I believe there is interest in stem cells too.

I’ve read all the threads and participated in some of them. Like many of us, I’m grateful to those who shared their knowledge and expertise here. It has always been a complicated medical situation that’s been difficult to understand, and those posters’ explanations have helped enormously. I thought I knew quite a bit about genetics, but actually there was a heck of a lot I didn’t know that I didn’t know, if you see what I mean.

Posters telling their own stories, as parents/relatives/friends, have also made me realise how little I really understood about what such a situation is like. There are a couple of posts on this thread that made me stop and think: what if it was my own grandson in a PICU with little or no prospect? Both my daughter and my son-in-law would be able to understand the science, but I could imagine them pursuing every possibility. What would I do if I thought that pursuit of a remedy was futile? I think I’d end up supporting them, even if I thought they weren’t doing the right thing, because I’d be afraid of my daughter pushing me away for not being supportive or being disloyal, and so I couldn’t be there for her when the inevitable happened.

The emotions are so complex. Yet this is what must get played out in every PICU in the country at times. I do hope that Connie and Chris, and their Mums and Dads, do get to realise in time that they and GOSH and the courts were all trying to do their best for Charlie, but just kind of speaking a different language.

Alci your post provides useful insight too since a number of posters have expressed the hope that if ever faced with a similar situation that friends or family would be able to persuade them to stop pursuing a treatment that had little prospect of achieving anything but the most minor improvement but as you say you would not wish to be shut out for not being supportive.

Peace at last for little Charlie .

As others have said he was such a cute, wee little baby when he was first born and his parents looked so happy. May everyone involved find some way to heal after this awful saga.

Peace and love to Charlie's parents and all who loved him.

I did not know that Maryz .

I've been following since the first thread but haven't commented as yet. I wonder how many others have been like me? I hope there are many as these threads have been amazing for their balanced discussion and especially links to facts (court reports, gosh statements, etc) that weren't readily found on msn and some excellent articles. This whole thing has made me question the "news". False or half reporting. Bias in the msm whether intentional or not. The sheer inaccuracy of reporting. I admit to being a "shameful" DM reader but always knew they weren't good journalists so turned to BBC when I wanted accurate reporting. I see now even that can't be relied up. The whole thing has also brought home how dangerous sm can be. I'm not an avid fb user. I was aware of the pitfalls (everyone else having a "perfect life" lies) but to see how a mob can be stirred up and let loose on sm has been fascinating (in a scary way). The ability of people to hide behind keyboards and post such abuse and horrific statements is shocking. Obviously ca abuse towards gosh was horrific but also latterly shocking words directed towards c&c. I don't see how sm can be policed. Do we need more laws? More moderation? How do we balance that with freedom of speech. I'll admit it's made me quite fearful for my own children's futures. SM seem so uncontrollable. The news isn't really the news anymore. It seems opinions are everywhere and facts are nowhere. I suppose all I can do is try to ensure my children (only babies now) have an awareness of critical thinking as discussed several threads ago?

I found myself much more emotional that I expected on the news that Charlie has now passed and I feel so heartbroken for his parents. I admit there have been times I've lacked sympathy for Connie in particular and found myself feeling frustrated at her constant need to fight and be on sm. I'm aware of the accusations of parent bashing being lobbed at these threads off and on. I have to say I found that posters have given me MORE sympathy for the parents. I've expanded my somewhat black and white view of their actions and can see why they might have taken all the actions they took now. Those that shared their personal experiences of losing a child thank you for expanding my thinking - I wanted to take Connie aside and say "just be with him" but reading your posts made me really think about how personal grieve is and how we all cope with it in the only way we can at that moment and it doesn't necessarily follow that you'd do what is "expected".

My heart really does break for them now as I feel they genuinely thought they could "save" him. I don't know how they will be able to grieve whilst they feel so strongly that they've been wronged. I only hope they get the support and love they need to get through this somehow. I hope they don't feel the need to keep fighting for Charlie. I hope they can set up a fund or donate to an existing fund in his memory and honour him that way.

It's shameful how the pro life American pastor etc jumped on the "cause"; how Trump felt he could piggyback earlier in the proceedings to benefit his political opinions; how an America doctor could give such hope to desperate parents without even having the courtesy to examine Charlie himself until court ordered (effectively); and how a group of strangers could set themselves up as an army fighting for a poorly baby and in doing so "claim" the tragedy for themselves, claim the family's heartache as their own, the family's personal loss as a loss to them too even though they were (mainly) strangers. Connie was right in saying theirs was a unique situation...but not because they have lost their baby or because ls was withdrawn. Sadly these threads have made me aware of how many others have been through that also. It is a unique set of circumstances in terms of the above. In terms of people effectively using a terminally ill baby to further their own causes or to give themselves "status" as a fighter or a wronged person. All the background chatter as it were ...all it seems to have done is prolong the agony for c&c give them false hope and more desperation.

I admire gosh for their compassion and for their determination to put Charlie's interests at the centre of all this. I am proud we are a country where the child has their own rights and parents have only responsibilities. Parents cannot always be relied upon to be rational in such extreme circumstances as much as we'd all like to think we'd only ever want what's best for our child. We have a justice system that enabled both parents and medical staff to give their "side" and for an independent judge to determine what was in Charlie's interests (although I do feel their needs to be some way to shorten the process somehow whilst allowing each side sufficient time to prepare their evidence).

At the end of it all there is only little Charlie. He was never destined to be here for long. I only hope his 11 months were not filled with pain. I hope he could sense his parents' love and his family's love and indeed I'm sure the love of the medical staff caring for him for his short life. Those that actual knew him and his real life and not just the "cause or the fight for Charlie". He wasn't a cause or a fight or indeed a discussion point he was a real little baby who was here for too short a time due to cruel fate of genes. Lets hope that their will be a real and proper cure in the future.

To all those who have lost or experienced anything like this loss my heart goes out to you 💐

Shark, I have also lurked in the background apart from 2 posts. This thread has been informative and thought provoking.
I am glad it has been kept on track and was not allowed to spiral into a slanging match.
Having witnessed many traumatic deaths in a professional capacity and had close family die under the age of sixteen ( one traumatic, one of cancer), I have learnt that people deal with grief and loss very differently.
Hopefully Charlie's family will gain peace and their anger will eventually dissipate.
The Children's Act will continue to try to protect children and hopefully GOSH/NHS will recover from the abuse they have received.
Let's hope that something positive can come out of this and that if an expert is used for an opinion then they have to assess the patient prior to giving that opinion.
As a parent my heart goes out to Charlie's family. Charlie RIP.
As a nurse my thoughts are with the teams involved.
Thank you to all who have shared their stories, I have learnt a lot and hopefully can take some of the points mentioned into how I practice.
Nellie good luck with fostering your angel.

Wonderful post shark

Seconding everyone who's said what a great thread this has been. This whole sad case has reflected badly on an awful lot of people, especially the media and sections of the pro-life movement, but Mumsnet has really gone up in my estimation - pure prejudice on my part, but I'd never have expected Mumsnet to host what might actually have been the most balanced, compassionate and informative discussion on the internet of poor Charlie's story. My particular thoughts go to those of you who've written about your own experiences on here. Rest in peace, Charlie, and I hope your parents find support and, in the end, acceptance.

Great post, Shark. You have expressed very well what many of us are thinking.

To be fair to the BBC, I have just been listening to Fergus Walsh on Radio 5 and he has given a very balanced view of what happened over the last 6 months regarding the court cases, the huge publicity the fund raising caused meaning every nuance was played out in public, and how Charlie's plight was jumped on by people with their own agenda and people who had no idea about how our health system worked or how our courts worked regarding disputes like this. Let's hope we do learn from this experience.

Peace at last for a very ill little boy.

I'm grateful children have rights here or this would have been dragged on and on for the parent's needs, not his.

I hope all involved can find some peace and reflection.

Bubbles

Yes, his piece on the 10 o'clock News last night was good

Shame the BBC website has opted for misleading headlines and old pictures, up to this point

Great post Shark

And I agree with shark - I've actually come to feel much more sympathy for the parents through reading some of the posts on here. It's clear that they genuinely convinced themselves that their son could become a "normal", healthy little boy without a terminal illness, which was something that even the US doctor wasn't offering them. Poor poor things. I very much blame all the fanatics and hangers-on who exploited this case for feeding the poor parents' false hopes in service of their own "causes", not to mention the media (which persisted in talking about "saving" Charlie). On balance, I do think it's preferable for children to remain anonymous in these cases: "Baby CG" would not have attracted anywhere near the same level of intrusive publicity, exploitative sentimentality and international faux-outrage as "Baby Charlie". I guess the parents' fund-raising efforts for Charlie would have been hampered by anonymity, or was there some other reason for naming him that I'm not aware of?

Another lurker saying "great post Shark"

I have realised that I mainly get the 'news' from mumsnet: opinion that acknowledges that it is opinion, facts that are based in reality and evidence, compassion and consideration always present, thought provoking, horizon expanding, articulate.

Peace and love to all x

The parents wanted him named and released pictures for the fund raising. When a national newspaper is used for that, you cannot put the lid back on the box. In the latest court case the parents wanted it to be heard in public despite the hugely sensitive nature of what was being discussed. I rather think their anger at the Drs at GOSH drove that.

If people want publicity the is no doubt it opens a Pandora's Box of hangers on but I think one of the worst aspects of this was Dr Hirano giving false hope in January and never visiting the patient until July and only then because the judge could not accept his evidence until he did so. That was cruel in the extreme and almost certainly prolonged the situation. There are discussions to be had about this and I totally agree that GOSH needed to go to Court to get a resolution. It is hugely sad it dragged on for months with the various court decisions from April to just earlier in the week. However, if mediation will not work, and another hospital would not take Charlie, unsurprisingly as their medics would agree with GOSH and wouldn't want the court cases, then court is the only option. That takes too long for most observers but the parents did, in effect, win more time. Maybe that was beneficial to them but sadly was not in the best interests of Charlie and he really did need to come first.

It's public because the parent genuinely believe GOSH were being mean, or spiteful, or just wrong in their treatment of charlie.

They believe what they are saying about prisoner of the state, corrupt judges, bias, lying hospitals

i dont know if parent believed that, or their Army
i think they googled and thought they had a cure with their googling.
very sad, but understandable in 2017.
love Shark's post

I think The CA went too far, far too far.