Charlie Gard 10

[user1498911470]

Hi guys new thread.

Let's try to keep this one as sensible and measured as the past 7 threads have been.

Please note the MNHQ comment on thread number 7.

"Hi everyone,

..... We had to remove several parent-blaming posts, so we'd like to ask folk not to do this. We think we can all agree that this is a truly awful time for all involved and we just wouldn't wish it on anyone. If there's anything we could do with more of, it's support. We'll continue to remove reported posts that break TGs (if we've missed something, do feel free to let us know).

If we have to make too many deletions, we will need to look at removing the thread; which is the last thing we wish to do.

Thanks all"

Starting now as 9 will fill up quickly.

Perhaps this is happening because there is no 'new' news. The US doctor and (maybe the Italian doctor) aren't due until Monday (although if I were them I might slip quietly in today) and most of what there is to say has been said.
This has been a great set of threads, but maybe we need a break.

Please do not let the thread descend into something that HQ will shut down.

There is a warning in the OP from them, just to mention.

Marigold76, yes - and I lived in the US for a few years in the early 90s where medicine was fantastic if you could access it. Many could not. Many families stayed in the military because of the healthcare provision which they told me they couldn't afford in civilian life, even though they badly wanted to leave. Socialized medicine has prevented Charlie from dying already.

It's also a fact that regardless of Charlie's lack of quality of life, the NHS can't afford these sorts of challenge to doctors' decisions - the users have to rely on the integrity and expertise of doctors' judgments or we're all sunk. Of course being able to challenge negligence is vital because doctors have to be capable of being held to account in that situation, but I hope the legal processes are changed to safeguard against this sort of thing - as opposed to medical negligence claims - happening again.

Listening to that last caller on Any Answers was sobering. Poor, poor lady and poor, poor son. It's tragic thinking of their struggle.

The thing is @ChristopherWren that the social media tsunami in many ways IS the parents' case. If it hadn't been for CA, this would have proceeded as many similar cases before have.

So it throws up questions; How do these situations work when a large, loose band of online "supporters" leak information, name medical and legal personnel, break court orders and spread misinformation? Will the legal process have to adapt to social media battles?

You might be right, Light.

However, all was calm discussing the complexities of the treatments etc until that dreadful spokesman came out with that statement last night.

It's the people surrounding the family that are keeping this case in the media, including some family members. They will continue to do so until this is resolved.

I bring ca posts here to argue against because we can't do it directly.

Anyone not toeing the party line is censored, harassed, deleted, blocked.

this is the only place i have found where i can express my opinion, and say why i think ca opinion and actions are wrong.

Sostenueto, I also agree that your posts have been very measured, for some reason this number 10 seems to be going downhill and I do hope these threads will not get deleted because its not fair, they have been very informative and very measured.

Thanks logical and thanks to all for support. Now to get back on track let's discuss why the judge has decided in allowing the doctors and experts to meet and come to a consensus about what's best for Charlie with no interference from court meaning g no lawyers present.
I believe the judge us trying to change the way the law deals with such cases. The long drawing out of this case has highlighted that maybe a different approach from the beginning is needed. In fact a period of mediation between the professional bodies and loved ones should take place first so that all facts are presented to the court straight away with no need then for appeals etc after the judge has issued his judgement. Perhaps if the meeting on Monday had been done before the very first court case then all this circus would have been avoided. Thoughts on this please

Yes @Sostenueto, I'm not clear on exactly what the pre-court discussion and mediation process was and have been curious about that.

Perhaps if disputed hospital cases formally entered a defined, statutory mediation process before court, that would be helpful.

I agree with gathering all possible info before a single court judgement.

I don't agree, muckypup as I have found this thread as interesting as previous ones. Particularly some of SerfTerf's posts.

Sostenueto the judge has mentioned already that he doesn't believe courts are the best forum for these cases where doctors and family come to blows, so he's set up a forum of the sort I would expect him to suggest going forward. I also can't help thinking that he hopes the parents will gradually see how hopeless Charlie's case is, as the medical information is hammered out by discussion between the doctors.

Cross post with SerfTerf this time .... I type so slowly.

I'm reposting a post that appeared at the end of the last thread that many people won't have seen. It was posted by @sashh and everything below should be credited to her:

". Sostonueto wrote that it is Charlie's mitochondria that are at fault. As I understand it, this is not so. There is nothing wrong with his mitochondria but they can't work properly because they need a specific enzyme in order to function. The RRM2B gene codes for the production of this enzyme. Charlie has a mutation of the RRM2B gene. He has inherited the mutation from both his parents, if just one parent carried the mutated gene then Charlie would not have the disease.

I was going to start an explanation about this, but I couldn't make it clear so I took to youtube.

Links to a couple of youtube videos - the first one I show to students as an easy reminder of what is inside the cell.

The second one explains the function of the mitochondria - it's a bit more scientific so (in the least patronising way possible) if you don't understand the terms then when you see the pictures a 'chain' of blobs, each differently coloured 'blob' is a different substance and if it wasn't there the 'chain' would not exist and therefore the function performed by it would not exist.

The third one is beautiful, it has no explanations but you can see how much is going on in a single mitochondrion.

youtu.be/rABKB5aS2Zg

youtu.be/_UQwbb00UV0

youtu.be/RrS2uROUjK4

Think of the time it could save serf especially in a case like this where time really is the essence. If having that period of mediation overseen by an independent ethics person as is now being done happened at the very beginning the parents then would have had no grounds to repeatedly bring the case back to court. All evidence all viewpoints all options for the parents would be covered and as you can only make a judgement on facts presented at that time and not on evidence bought months down the line it should be made clear the case will be judged on present facts and orders carried out on that premise only. Hope that makes sense.

Thanks caveman have already read it and I got it a bit wrong lol but only a layman, but general gyst the same. I should have researched a bit better.

The CA stuff is secondary to me, though I confess that I am shocked that a large group of people can be so ill-informed and closed off to debate/discussion. Perhaps we really haven't come that far after all, in some ways it is reminicesnt of Witch Hunts with the mob baying for blood

I agree. It is IMO a modern day version of our Ye Olde Flaming Pitchfork tendencies.

I don't think those tendencies can ever really be eliminated from humanity. Corralled to some extent, but not eradicated.

But my concern is that modern communications have removed the restrictions that geography placed on contagion. So rather than being in an age where Flaming Pitchforks is carrying on in a long term decline, we are actually in an era where it's resurgent.

Globally attitudes, outlooks, positions appear to being hardening, shifting towards the more hardline and actively whipped up beyond a point where most people's inner brake would come into play. Which is worrying.*

And that's a context where ChristopherWren makes a point worth giving real consideration, regardless of irritation wording might cause. Because I think the vast majority of people have a range views that may contrast but still be very much on the scale of reasonable. And they need a place for debate and dialectic. A place where they feel free to express themselves without concern of dogpiling.

Cos the last thing humanity needs is the the bulk of people, who have varied but reasonable views, to feel the only place they can express those views is in the confines of groups that lean pitchforky.

*NB i have already confessed that I have a long standing fascination for these groups, and like any "almost an obsession" it is entirely possible I have ended up assigning them more weight than is warranted, cos as a " thing" it has got bigger in my mind than it is in reality. Which means my concern may be disproportionate to the size of the issue. So feel free to roll eyeballs at me, cos I won't take it personally. I roll my own eyeballs at me quite regularly.

The problem is as per Gosh poistion statement didnt they try talking and mediation and the parents refused?

Think of the time it could save serf especially in a case like this where time really is the essence. If having that period of mediation overseen by an independent ethics person as is now being done happened at the very beginning the parents then would have had no grounds to repeatedly bring the case back to court.

Yes and maybe thrashing it out in a collaborative atmosphere (rather than an adversarial legal framework) would have made the conversations easier and the parents would have felt more "heard".

The two american women living with mito are apparently "on standby" to appear via video link.

One has pointed out that there may be many more cases of the specific mutation charlie has because often insurance doesn't cover/parents can't afford genetic testing..

Yes love, our shitty socialised medicine that is killing babies to save money provides that genetic testing free. With the added benefit that it adds to the research and knowledge of mito mutations.

Well I'm hoping for a sensible thread lime this one to continue and I for one welcome people with differing views because I believe I learn an awful lot by listening to others points if view. Unfortunately sometimes our emotions do get the better of us all and I beg everyone now to pass the bottle round, make amends and start afresh in the true nature of these threads with a unanimous effort to learn, respect and enjoy each others thoughts. Cheers to all of you

The challenge with mediation is that it only works if both parties are willing to offer some form of compromise and find an element of common ground. I imagine it's nearly impossible to find common ground between believing there is a strong likelihood of a cure for a child abd believing that life support should be withdrawn.

Writerwannabe83

I know it was a couple of hours ago but I wanted to comment & say that I agree 100% with your post.

If the court orders them to go to mediation if they wish to carry on with a court case maybe that will work or is it undemocratic?

It would be mandatory mediation with all the medical representations in one go. Everyone would have a chance to put their views on outcome and evidence to support it.
Without that you could have a situation where the legal procedure is being used to serve one outcome, not necessarily the one that is right for the patient.