Meet the Other Phone. Flexible and made to last.

Meet the Other Phone.
Flexible and made to last.

Buy now

Please or to access all these features

AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

See all MNHQ comments on this thread

Charlie Gard 7

999 replies

CaveMum · 13/07/2017 15:58

Continuation of the discussion.

It looks highly unlikely that there will be a verdict today as GOSH have not yet been able to put their case across. The Gard family had their position heard this morning and currently an expert witness from the US is being questioned via video link.

OP posts:
Thread gallery
10
smilingmind · 13/07/2017 22:35

Lovely I am in a FB group (well have blocked it but not left) where people advocate weird, useless and frankly dangerous treatments and many go overseas for treatment, usually to the US. Some improve a little for a short time and then go back for more. Others have spent all their money for nothing but still others go.
It really seems you can get just about any treatment there if you pay for it.
I was a bit drawn in at first. Mainly for supplements and other harmless things which did not help at all. Was never tempted, or convinced enough, to sell everything for a few weeks treatment.
Of course the NHS doesn't recognise any of these treatments because they are stupid and backwards.

nolongersurprised · 13/07/2017 22:36

The American expert seemed a bit disingenuous. Essentially saying that his treatment might well be effective to some extent if the UK assessment of brain damage had been overestimated. And implying that on his review of case note summaries etc things didn't seem clear-cut.

But when asked if he could come and examine Charlie himself (entirely appropriate IMO) he demures, saying it's not his area of expertise. If clinical neurology isn't his area of expertise it's not really appropriate to be commenting on the findings of clinical neurologists.

Lelloteddy · 13/07/2017 22:36

Cinder I sincerely hope those threats have been reported to the police?

Writerwannabe83 · 13/07/2017 22:37

Lots of posts of on the Facebook page from parents saying they've been ignoring their children because of Charlie.

To be fair, I've ignored my son for most of the day because I've been glued to this thread in order to get the updates Grin

muckypup73 · 13/07/2017 22:38

Cinderllaspinkdresswasthebest, that does not surprise me, when they threaten to kill staff members at Gosh, your not allowed to disagree, there was a few question to answer before you actually got to join, I did not go that far, I just watch from afar....

muckypup73 · 13/07/2017 22:38

Writerwannabe83, well thats very honest lol

MissHavishamsleftdaffodil · 13/07/2017 22:39

Just caught up on everything. I'm trying to trust that the judge is playing a longer game here - and yes, the standard judicial process hasn't fixed this situation so maybe he's trying something less orthodox for everyone's sake.

But I agree with a pp it feels more likely now that Charlie may be subjected to this experiment than it did, and I do feel that yet again Charlie has become lost in the massive mess of adult needs and issues, and those having to be put first. The discussion around him today were nothing to do with him as a person, but how he fits into adult agendas. This looks like dragging on well into next week at the very least. Sad

Alfiemoon1 · 13/07/2017 22:40

I don't understand the phrase ca are using if he's still fighting we are still fighting? He isn't fighting he's being kept alive by a machine while his parents go through numerous legal battles. Or am I missing something? I keep seeing that phrase and don't get how it is supporting ca views

muckypup73 · 13/07/2017 22:42

MissHavishamsleftdaffodil, I really cannot see how, because if the judge rules that Charlie can have the treatment, then in future when a child parents are feling the same they will have to go through all this again, I seriously think this will be nipped in the bud and the law will be changed so this cannot happen again, it its otherwise its.........................

TheWeeWitch · 13/07/2017 22:42

Alfie - that's the phrase the parents keep repeating. Kind of a catch phrase.

Cinderllaspinkdresswasthebest · 13/07/2017 22:44

Lelloteddy Thu 13-Jul-17 22:36:44
Cinder I sincerely hope those threats have been reported to the police?

She has Lello and is touch with GOSH legal team - who are keeping a close eye on CA's page.

GabsAlot · 13/07/2017 22:44

i dont gt th fighting comment eithr i think connie said it once

my mum had cancer had chemo made hr worse then she died

i was relieved she want suffring anymore i want hr to be free-if sh had had to go on ventalation i think i would have crumbled

MissTify · 13/07/2017 22:45

I really hoped I had joined a supportive thread regarding the best interests of Charlie, but I've not had any replies to anything I have posted and it seems that the same old posters seem to get the replies. It seems a pretty clique thread, and a reluctance to welcome new posters. It's a real shame, given the subject matter. I would have thought that new posters on this thread would have been made most welcome, given the most sensitive subject matter.

smilingmind · 13/07/2017 22:48

I think, and am really hoping, that the judge is just doing everything in his power to ensure there can not be another appeal.
Surely if we can see how uncertain and uninformed the US doctor was then he, with all his knowledge of the case and the law, must do so.
I don't think there is any chance of a conclusion tomorrow but hopefully it won't be too long and it will be the right one for Charlie.
Maybe all the papers handed in were the Magna Carta. CA were sure it would swing the case in their favour.
Not forgotten you lonely
Sleep well all and see you tomorrow.

muckypup73 · 13/07/2017 22:48

Lightlovelife, if push came to shove, they would have them treated at Gosh, hypocritical mucho....................

Dustbunny1900 · 13/07/2017 22:49

@MissHavishamsleftadaffodil agreed! But I have to trust the judge wouldnt allow him to be subjected to experiments that may possibly cause him pain. I pray , anyways

LetsGoFlyAKiteee · 13/07/2017 22:55

Good that the judge commented on the threats towards staff as they were plenty on there. Shame the whole GOSH trying to cover up/murder hin comments still being written on there

Just hope this can come to a end whatever the outcome. I just don't see how he can be used as a experiment and it be seen as okay.

nocoolnamesleft · 13/07/2017 22:59

Okay, speaking generally, measuring head growth:

Head circumference (also known as OFC for occipito frontal circumference) is a pretty crude measure. It is used as a proxy for brain growth, as it is the growth of the contents of the skull (usually the brain) that mainly govern the growth of the skull. This is not about the growth of the entire head, but of the vault of the skull, so you're basically measuring from the forehead and the front to the most prominent bit at the back of the head, and back again. No ears in the way, no face in the way, preferably no hair/hats/tape holding lines in the way. It's not especially accurate in most small children because they move. In some ways it would be easier to measure in a child who cannot move. If the head circumference is not increasing appropriately, it is commonly because the brain is not growing enough. It is occasionally because some of the skull bones have joined together too early, but this tends to give a very noticeable unusual head shape, and is pretty easily diagnosed. Sometimes the head circumference goes up too quickly, and that can be that the brain is growing fast, but that would be very rare. Much more commonly, it is because the fluid spaces in the brain are expanding, increasing the pressure in the brain and skull. Oedema over the skull can also cause over reading.

It is recognised that OFC measurement is subject to a fair bit of inter and intra user variability (2 people don't get exactly the same number, one person doesn't get exactly the same number twice). There are 2 safeguards against this. The first is that you monitor over a time period, and like with baby weights, it is the general pattern of increase you look at, not one absolute value. The second safeguard is that most paediatricians have been trained not to measure the head circumference once, but to each time measure it 3 times, to make sure you're getting something fairly consistent, and usually use the largest good measurement.

If a baby/small child's head circumference is growing more slowly (or indeed more rapidly) than would be expected, the first test is usually for the measurement to be repeated. If, however, the general trend is abnormal, then that is when you move onto scanning the head. In really small babies, the first scan is often USS (via the soft spot) - it's quick, it spots big problems, no radiation, but not great detail. CT scan is relatively quick, but radiation, and medium level detail. Tends to only be done in relative emergency (or for a few rare things...this'll get too complicated) because of the radiation. MRI gets the best brain detail, but takes longer. There's no radiation, but nothing ferromagnetic can go in the scan room, so real palaver to perform on unstable PICU patients - different kit for almost everything.

None of the scans give you the head circumference. You could technically try to reconstruct one from all the pictures of slices of the head, but not something anyone ever really tries to do. Because you're using it to look directly at the brain, not to try to reconstruct a measurement whose main purpose is to tell you whether to scan a brain.

Hope that helps.

MyPatronusIsAUnicorn · 13/07/2017 23:01

MissTify what are you on about? People just post. Some reply directly to others. You just join in with the posts, not expect a welcome fanfare. My posts haven't been personally responded to and I'm a long time poster.

Lightlovelife · 13/07/2017 23:01

Yes, Mucky but when the chips are down...
MisTify I have posted several things that no one has responded to, but I think it is because this thread has been so fast moving. A couple of times I have posted things that were relevant at the time and while I have been typing the thread has moved on and my post has been completely out of synch with the way the thread has gone. I don't know how many people are actively contributing to the thread, but it's bound to happen.

PickAChew · 13/07/2017 23:01

Octopus, an accurate skull measurement involves a lot more effort and pain than a tape measure. They need to scan him which involves movement etc. Not the most instant, comfortable or quick and convenient procedure.

PickAChew · 13/07/2017 23:04

And nocoolnames went into more useful detail than me.

Basically, it's not a trivial measurement to make.

thatdearoctopus · 13/07/2017 23:07

OK, so leaving aside CA's assertions that GOSH are lying and making up things about Charlie's condition in order to justify being able to murder him Hmm , if they've said to the judge that his head is not growing, presumably they have some grounds for it?

Venusflytwat · 13/07/2017 23:10

Cinderella that's awful.

I think the Judge is making the mistake of thinking Connie and Chris can still be reached with logic. I mean this kindly. I think he thinks if he can get GOSH to talk to this US scientist and get them to set out how poorly he really is that the US doctor will withdraw his claims. Making it clearer to rule but also easier for Charlie's parents to accept the ruling.

I just don't think they can get to that place now. Not now that CA and the pro-life vultures and the keyboard warriors have escalated this so. It's gone too far.

I really hope tomorrow brings clarity that there is no new evidence which is genuinely applicable here.

GabsAlot · 13/07/2017 23:10

thanks nocool

do you think if thats the case the judge has dropped the qustion of has his head grown if its that complicated

Swipe left for the next trending thread