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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

Charlie Gard 8

999 replies

cjt110 · 14/07/2017 11:49

New thread so that we can await this afternoon's hearing at 1400 (UK time)

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"

OP posts:
SerfTerf · 14/07/2017 16:37

they are only people who want a baby to live, whether they express it well or not.

I don't think CA is "only" people genuinely concerned for Charlie, really. There's a whole motley crew of hangers on and excitement junkies.

goodbyestranger · 14/07/2017 16:37

rabbit and others :)

rabbitnothare · 14/07/2017 16:38

cjt110, sorry that wasn't aimed at youFlowers.

Original poster
cjt110 · 14/07/2017 16:38

rabbitnothare I don't understand your comment?

OP posts:
phoenixtherabbit · 14/07/2017 16:38

annandale I never said they should have the final say and every decision should be theirs, I don't know I just feel a bit weird about the fact parents have literally no say. I don't know why and I know it is not logical at All, I just can't imagine being told what would happen to my baby and having no say in it. I am looking at this from an emotional viewpoint though because I have a little boy of a similar age. I imagine I would probably think differently if i wasn't looking at this emotionally and purely looking at facts etc.

I did think though maybe quite ignorantly that you could request scans etc, obviously not a given that you'll get them but I really thought you could. This is obviously not the case with this case as the parents did not want the scans.

Original poster
cjt110 · 14/07/2017 16:38

I was gonna say rabbitnothare!! Smile

OP posts:
TheWeeWitch · 14/07/2017 16:38

@Sostenueto might be onto something I think.

GabsAlot · 14/07/2017 16:39

thanks for all updates cjt and all for their input and knowledge

Original poster
cjt110 · 14/07/2017 16:39

No trouble Gabs

OP posts:
0nline · 14/07/2017 16:41

i just feel with connie in th room they will be reluctant to say certain things seeing as shes already disagreed with most of what thyve said so far

I can understand GOSH's objection. They are human. High tension is no fun in a meeting at the best of times.

However from another perspective, they have to do fulfill their obligations to their patient, Charlie, and at the level of prestige GOSH operates at, I think they can be trusted to do that, despite any discomfort.

From the perspective of the American doctor, if the level of distraction is as bad as is being presumed (and I am making similar presumptions) it will potentially add to the information he has to apply to his decision. Especially when you bear in mind how litigious America is. Not to mention factoring in the potential for bank rolling of legal costs by groups who have a strong ideological bent.

He will need to consider if he believes in his treatment's outcomes enough in the full context of Charlie's clinical condition, to discount any risk of finding himself where GOSH is today. He can't do that without a full picture of where GOSH is today. And Charlie's parents, all aspects of them, are part of that picture.

So I don't think it is a bad thing Connie will be in the meeting, despite my comprehension of GOSH's earlier objections.

SerfTerf · 14/07/2017 16:43

I'm feeling a bit more sympathy for the dad this week, paradoxically.

It's become clear he's just an ordinary bloke who doesn't really follow complex arguments or subtleties and I think a lot of the explosiveness he exhibits is frustration at wordiness and subtlety.

TBF, he was just a postman happily living his life and then overjoyed to become a dad and then, wallop, everything got very sad and very technical very quickly in his world. Not only were they facing losing their baby, but they were plunged into a word of scientific detail and legal arguments.

He's lost and out of his depth and very, very emotional, I think.

rabbitnothare · 14/07/2017 16:43

I was listening to dr earlier on twitter who said that it's never happened before in her experience and it can be brutally frank.

I am not sure that I could cope with that.

Original poster
cjt110 · 14/07/2017 16:44

I keep seeing the image of Connie, having just had Charlie (I think) with both parents beaming with joy. What fresh hell was about to unfold for them....

OP posts:
Katinkka · 14/07/2017 16:44

I really think it's a bad idea for Connie to be there. I don't agree it should be allowed at all. It's not appropriate or helpful, in fact it will be a hindrance to the experts to speak freely. I think the parents are being pacified and pandered to way too much.

I am really upset that this is continuing. As I said before, I have disabled children and know many others so quality of life has always been a concern to me. The poor babe will now have to kept alive even longer, possibly in pain and discomfort with zero quality of life.

I am bored with Charlie's Army. They are a bunch of bored halfwits with nothing of worth to say. I don't find their stupidity funny at all. I do find the whole thing interesting from a psychological perspective though and agree with a previous poster that they are meeting unmet needs by being a part of the group which gives them an outlet of expression as well as a feeling of belonging.

Puzzledandpissedoff · 14/07/2017 16:45

Maybe the judge is thinking that if Connie is at the meeting she can't accuse anybody of lying/ conpiracy etc etc. Everything will be seen to be above board, so no room for any challenges later

If only ... it's not exactly worked so far, has it?

SerfTerf · 14/07/2017 16:46

Exactly @cjt110 . It's heartbreaking.

SomeDyke · 14/07/2017 16:48

As regards CY being in the meeting, I think the judge has been extremely careful. If she isn't there, then there could be later claims about what did they have to hide etc. If she is there but can't speak, then the clinicians won't feel under any pressure to explain it to her, and she can't disrupt the discussion. With an independent chair, again that shows not just lack of any bias, but being as open and transparent as possible. The medics should be able to focus on Charlie and the facts of the case and his condition.

I think this is the best possible current scenario for Charlie, in terms of the judge being able to make an informed ruling if that is necessary, and removing as many grounds as possible to prevent a further appeal if the ruling is one the parents disagree with. I think the judge is doing the job he is supposed to do, and he is also, I think, being seen to be doing it!

Whether the process should have been faster, that is a matter for a change in the law/procedures in the future (and the judge BTW has kind of suggested that in terms of what he said earlier). This adversarial court process isn't always what the patient needs to get the best result.

SantasLittleMonkeyButler · 14/07/2017 16:49

Also cjt when you look at that photo & then a photo of them now. They've aged 10 years in 11 months. Perfectly understandably.

Original poster
cjt110 · 14/07/2017 16:51

Santas Yes, much older and more gaunt. No matter their motives, aims or anything else, they just want their boy to be OK. Whether this is the right way to go about things who knows...

Well, I'm going to take a break now. Wishing you all well. Flowers

OP posts:
phoenixtherabbit · 14/07/2017 16:52

rabbit sorry I'm not directly targeting you and I did say I haven't read the other threads so I can't comment on what's been said. If it brings you light relief then fine I was just saying it doesn't do that for me and that makes me feel uncomfortable I haven't told you to stop.

I also can't comment on Alfie because I don't know who he is? I also have only briefly looked at the CA page and I do understand what you're saying about them. I don't agree with what some of them post either.

goodbyestranger what do you think their motive is?

pasanda · 14/07/2017 16:52

Thanks OP for the constant twitter updates. Really helpful as I just couldn't keep up with it all, plus life!!!!

ALoveWorthKeeping · 14/07/2017 16:54

I think Connie is the one that found the US Dr in the first place, so presumably has a "better understanding" of Charlie's condition. And if one of them is there there can be no accusations after of conspiracy or lies.

Pomegranatepompom · 14/07/2017 16:57

To the poster who asked about sending cakes. This would normally be really appreciated but I wonder if cakes would be viewed with caution at the moment due to the threats of harm. I'm sure a card/email/tweet would be appreciated and maybe cakes at a later date?

DarthMaiden · 14/07/2017 16:57

I'm not convinced that CY being in the room (silent or not) is the best outcome for the doctors, but I think on balance it's the best outcome in terms of the case.

It removes any accusations of a lack of transparency further down the line.

There is also the possibility (remote I concede) that hearing the medical detail openly discussed in detail might allow a consensus to be reached.

rabbitnothare · 14/07/2017 16:57

Someone sent a balloon to the PICU staff yesterday I think, I wonder if it got there?