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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Charlie Gard 9

999 replies

muckypup73 · 14/07/2017 20:53

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"

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Thread gallery
6
lougle · 15/07/2017 08:01

I'm a bit confused. Did Armstrong argue that because he/she believed it to be the case, or because CY believes it to be the case and he/she is representing CY's position?

TefalTester123 · 15/07/2017 08:02

Great threads. Been watching a while.
Absolutely cannot understand why judge asked US medic to come here. It was reported that he (the US Dr) sounded reticent to come when initially asked.

Surely the type of info he needs in order to decide if treatment might have any effect is obtained from measurements, scans etc not looking at the baby. Any case conferences could easily be done by video calls.

In any other profession you'd be asked for something like a list of criteria that need to be met for treatment to commence.

muckypup73 · 15/07/2017 08:05

stitchglitched, I think Ca hear what they want to hear and miss the bits they want, so they can dramatise everything.

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Sostenueto · 15/07/2017 08:05

Judge Francis is trying his best to get this over and done with as quick as is possible for the sake of Charlie, not his parents. He has, however, got to curtail the parents from constantly trying to prolong the inevitable because either way, with or without the so called wonder drug charlie will die. He cannot survive indefinitely. But even if the final decision is given on the 25th and the original order is upheld there will be yet more delays as it will be close to Charlie's first birthday. The child, of course, will be totally unaware of his birthday, but the parents will insist he lives to 'celebrate' it. Would we be classed as totally crass, unfeeling and bike to deny him that? Yes we would I'm afraid, so inevitable delay up ahead. I cannot see peace for Charlie until well into August. So, in our bid to be humane, we are being inhumane. Sad

Alittlepotofrosie · 15/07/2017 08:06

He might have sounded reticent because of the practicalities of dropping everything in the us to rush over to the uk. Maybe he was considering whether that was possible on a short timescale.

Sostenueto · 15/07/2017 08:06

Vile*

Ceto · 15/07/2017 08:08

Just reading in the MailOnline that the Gards' lawyers want Connie to be present at meetings with the American doctor because she 'knows as much as anyone in the UK about the condition.' That is excruciatingly embarrassing. I don't know how the doctors manage to deal with such a deluded person.

I had the impression that that was solely generated by Connie and that it wasn't the lawyers' idea. After the judge initially indicated that he thought C&C should not be there, Armstrong tried to push for it, then asked for a break to talk to them, then came back to say they still felt they should be there. It sounds a bit as if Armstrong wanted to talk to them to advise against pushing it (because, as I understand it, it's pretty unprecedented) but they insisted.

muckypup73 · 15/07/2017 08:08

Alittlepotofrosie, we would all go to the ends of the earth for our children, however when a little baby is suffering its totally different, the judge is leaving no stone unturned becuase of how high profile it is, the doctor that is comming from the Usa was not told the extent of Charlies condition, when he comes and exams Charlie and draw his own conclusions which I firmly belive he will say that Charlie is too sick to have the treatment and therefore, the new evidence will be dimissed.

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Sostenueto · 15/07/2017 08:09

Bike equals vile

Ceto · 15/07/2017 08:11

I wonder what happens if they have the conference, Hirano says he can do nothing without a scan and the parents still refuse? Given that that would be the end of their case, I wonder if GOSH could ask for an earlier hearing.

NellieBuff · 15/07/2017 08:12

Alittlepotofrosie Isn't it funny I also thought Charlie should be allowed to pass peacefully at the start of this and now I after hearing more and more I feel even more strongly that it is so wrong to keep the poor wee soul going and that the sooner he can pass the better.

I am not saying I am right and you are wrong just funny how perceptions can change as things progress.

muckypup73 · 15/07/2017 08:13

Ceto, I think thats what might happen, they refuse the scan and the judge then says new evidence dismissed.

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Sostenueto · 15/07/2017 08:14

The final decision I thought would be the 25th?

Sostenueto · 15/07/2017 08:15

Hi mucky! Yep judge playing a right good poker hand IMO.

Stardustandicecream · 15/07/2017 08:16

I feel so sorry for Connie - what an awful position to be in and what a responsibility and stress she now has going to that dr meeting alone.
I truly hope she and her husband getting some good counseling throughout this. I don't know the medical side of it but I do know a mothers instinct should ALWAYS be trusted. I hope they decide on the right outcome for Charlie soon .

Sostenueto · 15/07/2017 08:18

They have refused all help and counselling star.

Nquartz · 15/07/2017 08:18

online your post brought a lump to my throat, I agree completely. I've also been thinking about this a lot and I think I could rely on my mum to keep a level head whereas I think MIL would fall more into the "life at all costs' camp.

Sostenueto I know the thread has moved on since, but I also don't think that you've been overly critical of C&C. It's such a difficult subject but I think you've been compassionate and sympathetic. As has been said numerous times over the 9 threads that it is possible to have massive sympathy for them and still disagree with some of their actions.

muckypup73 · 15/07/2017 08:19

Sostenueto, I agree, the judical wink said it all yesterday.

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user1476694639 · 15/07/2017 08:20

I've been keenly following the CG case and lurking on this thread as I have a son (my first) a few months' younger.

I remain extremely confused as to the exact facts of the case. Unless I'm missing something, we don't actually know why Charlie's parents are refusing an MRI (if they are)(?). This speculation is based on inference from the judge's words (?).

Likewise, if no one has taken an EEG since the seizures, it's unclear how GOSH can be certain about the extent of his brain damage. Likewise, no one seems wholly certain whether Charlie is in pain or is brain damaged 'beyond pain'. It is the right thing to give him prophylactic morphine - just incase.

My impression is that the situation is much less black and white than some commentary on here would suggest. I also place far less trust in NHS professionals than some commentators on here. I certainly don't think GOSH are evil, but it's wholly possible that they are - like much of the NHS - overworked and underresourced. Based on my experience of having a rare cause of infertility, I've also found the NHS to be quite conservative about what they're willing to do, and the likelihood of success. This is because, quite sensibly, there is a high bar of evidence required before public money is spent on it.

The idea of a child's welfare can be different from their best interests, and is intrinsically a conservative idea. As an example, it is not good for the welfare of anyone to go on a one way mission to Mars. Happily for future human space exploration, we permit rational adults to choose actions against their own welfare (but in their perceived best interests). I also chose actions against my own welfare - as defined by the fertility regulator - in order to try for a child, based on a gut instinct about my own poor health and reading scientific papers. This turned out to be the right decision.

Unfortunately, at the cutting edge of medicine, there's often a lack of certainty about the success of treatment, the prognosis and even the underlying physical mechanisms. It's perfectly reasonable for the parents both to question uncertainties, such as whether their son is in pain, and to ask themselves what they'd want in his position - they are his closest relations and know him best.

There are countless people with severe disabilities who campaign against assisted dying because they feel it devalues their lives. By extension, they would prefer to live than not. Hence, it is unclear whether Charlie, were he a (theoretical) nondisabled adult, would choose to risk a medical treatment with likely minor improvement rather than lose his life. First, we have no idea of his perceived experiences. Second, he may have hope that a medical breakthrough may be able to reverse his condition in the future (this is often a hope of terminally-ill adults). Unfortunately, we have no way of asking him what he wants - he is both brain damaged and a very young child.

I appreciate that some of the posters on CA are both abusive, and overemotional. However, if it was as cut-and-dried as it appears from CA -vs- Mumsnet, then I don't think the judge would be spending additional time on the case. He doesn't have any stake in making the parents feel good about themselves if the evidence is clear that they're torturing their poor son.

muckypup73 · 15/07/2017 08:20

Stardustandicecream, a mothers instinct should be followed yes, but when that is to the detriment of the child then its a different story.

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Nquartz · 15/07/2017 08:22

Stardustandicecream even when a mother appears to be massively in denial about her son's condition (e.g. he watches the ipad) and more than world-renowned doctors? Surely sometimes decisions need to be made by someone objective

Sostenueto · 15/07/2017 08:23

No more hearing after this one ceto. 3 courts and 3 appeals were in favour of terminating Charlie's suffering. If the judge says no to wonder drug then the original ruling will be upheld. This is, in effect, the parents last chance and the judge must make sure that it is. It cannot and should not be prolonged anymore.

Lexieblue · 15/07/2017 08:23

I do actually think Connie could be considered an expert by experience of the lived experience of Charlie's condition but (and it's a big but) before people specialise they have to undertake many many years of studying general medicine which then informs understanding of the specialism She's not on an equal footing because she hasn't done that. That's not to say her views and experiences aren't valid because they are, it's just that it is highly unlikely Connie will have any medical knowledge to add to the discussion that is not unknown to the experts.
I am uncomfortable with Connie being there because one of two things will happen I believe, one it will stifle frank discussion for fear of upsetting her or two Connie will find it too distressing and either shout out/interrupt or absolutely devastate her. Neither can be a good outcome in charlies interests.
The judge is obviously trying to build bridges between the medical team and parents by encouraging transparency. I can see why he has said Connie can be there. It's just so sad it has come to this.

NellieBuff · 15/07/2017 08:25

It was my DH that pointed this out on the CA page so if they're saying "he's unresponsive" it's will be because he's thinking "can't you leave me the uck alone" if it wasn't so tragic it would be funny as the whole point is Charlie cannot think and has absolutely no comprehension at all.

Stardustandicecream I am afraid that you and I are going to have to completely disagree on that one. Medicine and fact win in this case for me (and every time)

Stardustandicecream · 15/07/2017 08:27

I guess they must feel like the counseling will be one sided and no impartial that's such a shame - hopefully they will have some after though - what they are going through is a massive trauma and they need trauma counseling.
I can understand their wanting to refuse medication help - I actually had drs try to push that on me - when I was trying to push for care for my baby who was sick but the drs were missing and not diagnosing her ailments properly - it always shocked me how they could just assume it was all my head and try and medicate me whilst not treating my D.C. Properly. We did eventually get the treatment needed but my what a battle. I guess that's why I'm a bit siding with the parents even though I know in this case the reality is the drug won't make much difference. Just because I know how strong and powerful a mothers instinct is and how easy it is to mislabel a mum (Esp for some reasons dads don't get this) as deluded when actually they are so close to their baby they so pick up on little movements or changes that other people don't see.
Poor family and poor hospital staff - the whole thing is so sad.