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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:
muckypup73 · 14/07/2017 20:46

Maudlinmaud, trust me there is nobody on here that thinks this is the slightest bit entertaining, we are having a discussion and a level headed one at that, I think the majority of people on these posts are wanting the right thing for charlie.

SumThucker · 14/07/2017 20:47

You don't have to join the page to view the content.

muckypup73 · 14/07/2017 20:47

Please can I make this 100% clear, I have not joined charlies bloody army, I can see their posts, without joining.

Writerwannabe83 · 14/07/2017 20:48

I've just finished reading this thread as I was unable to follow it this afternoon.

I too am shocked the C&C have refused imaging of the skull to assess growth. Can't they see the damage they are doing to their own case?

We have many multidisciplinary meetings at work regarding our patients....be it to discuss their health and what we think is the next best step, or if we are having a meeting due to concerns about the parents ability to care for the child and they do not involve parents. They typically include nurses, the doctors involved in the case, HV's, Community Nurses, Social Workers and sometimes the Pokice, but the parents are not involved in the main discussion and are only bought in afterwards so we can discuss our conclusions with them.

However, on three occasions I have been in meetings where the parents have been allowed in because they DEMANDED to be and it absolutely changes the dynamic. As professionals we feel tense and we absolutely do restrict what we want to say for fear of upsetting the parents or angering them. Sometimes it is very hard to say what you honestly think or feel when you can feel their eyes burning in to you. I think in meetings where parents are there the real 'truth' isn't said due to how uncomfortable it feels to actually voice it.

Even though Connie is not allowed to speak (can't see that happening) her presence will undoubtedly affect how the meeting progresses and therefore its conclusion. I would worry that the outcome of the meeting may not be a valid one because it would be based on professionals perhaps skirting around the truth and not speaking as honestly as they would if Connie were not there.

muckypup73 · 14/07/2017 20:49

Whos making the thread??? we are on 930 posts now, venusflytwat, can you not do it???

BeyondDrinksAndKnowsThings · 14/07/2017 20:49

I was talking to a few friends about this earlier btw. All were under the impression that a genuine cure was being withheld. Whilst we were sat watching BBC news - they haven't picked this up from Facebook or anything like that.

Science-related reporting could really do with a bit more work.

muckypup73 · 14/07/2017 20:51

BeyondDrinksAndKnowsThings, someone trul truly needs to do a big balanced write up an honest one.

muckypup73 · 14/07/2017 20:52

Ok cant see venus so I will start thread 9

LogicalPsycho · 14/07/2017 20:52

I don't know if it is just down to me being social media illiterate, but I couldn't see the page's content when I tried to view it without joining. If that's the case and it is infact open I'll remove myself.

NellieBuff · 14/07/2017 20:52

11122aa it may or may not be a nutty idea but posting that C&C will look forward to it is nutty to say the least. Also hospitals have kitchens or are CA saying that GOSH is trying to starve them into submission.

My point was that at a time like this food is the last thing on your mind and you could be eating lobster, cheese sandwich or cardboard and it will all taste the same.

BeefyCakes · 14/07/2017 20:53

What I mean by new tests, any diagnostics that the parents have refused that can confirm just how poorly he is.

I think it speaks volumes because i believe the parents realise that he is very poorly, but refuse any test that will confirm this, this would mean no hope of the treatment in America.

At this stage Charlie should be a ward of court.

Nquartz · 14/07/2017 20:55

Wanted to sneak a post in before it fills up.
Thanks to everyone who updated during the hearing, I couldn't follow it live today so spent the last couple of hours catching up.

I'm surprised it's going to be another 10 days before a decision is reached especially considering the judge rejected the original request for more time. It is better than the meeting etc happening even later if the parents legal team had been given until the end of July to gather evidence.

I've really appreciated the lighthearted comments, DH & were chuckling over a Mario lookalike waiting on the end of the phone since yesterday.

Last thing, has anyone heard from LonelyMummy today? Thinking of her & her ballerina

GabsAlot · 14/07/2017 20:56

unbelivable sirzy talk about twisting things

Venusflytwat · 14/07/2017 20:57

Thanks Mucky :)

LogicalPsycho · 14/07/2017 20:57

I too am shocked the C&C have refused imaging of the skull to assess growth.

I'm shocked but not surprised.
Imaging of his brain would categorically prove it has or hasn't grown. You can shout about doctors being wrong til you're blue in the face, but I'm sure C&C's lawyers didn't want to risk damaging their case by having it undeniably proven.

muckypup73 · 14/07/2017 20:58

I think, cant be 100% sure that lonley mummy may have been on? breifly, or someone mentioned her, so I could be wrong.

muckypup73 · 14/07/2017 20:58

Venusflytwat, your welcome, I diddnt want to not postyours, but wanted to get the post up before we run out lol

Jux · 14/07/2017 21:01

Puzzled oh gosh that wasn't at all what I meant to convey, oh no, Oh how awful. (Though I'm sure you've got the quote right, Puzzled.) Apologies, apologies apologies, I really hope no one was upset by that.

GabsAlot · 14/07/2017 21:01

thats ok didnt realise the posts were public

MirandaWest · 14/07/2017 21:04

I think there was a brief bit of time where Charlie's army was a closed group but then went open again after maybe a few hours.

GabsAlot · 14/07/2017 21:06

somthing that bothrs me though

if the judge happns to rule in favour of treatment isnt that just senng out a message that you can withhiold treatment call doctors liars an then you'll get your way

gosh will look the bad guys and that c and c were right all along

blueskyinmarch · 14/07/2017 21:07

Thank you for this thread. I keep meaning to post something but to be honest I have no words. None. My heart breaks for little Charlie and his parents. They are clearly going through hell.

I have lost a child. Not to illness but in rather more brutal and horrific circumstances. I don't think anything prepares you for this no matter how it happens. These parents are grieving right now and this fight for treatment is how grief is manifesting itself for them. We really need to offer them all the empathy and compassion we can muster.

Puzzledandpissedoff · 14/07/2017 21:07

As professionals we feel tense and we absolutely do restrict what we want to say for fear of upsetting the parents or angering them ...

Thank you once again for your valuable insight, Writer

I've no doubt some will feel it's crucial that the parents shouldn't be "upset or angered" ... whereas others of us believe that what really matters is Charlie and what's best for him (something that's repeatedly been laid down by the courts of course, but regrettably not actioned)

smilingmind · 14/07/2017 21:08

Agree with you about the 'keepsakes' Maudlin