Charlie Gard Case 4

[LovelyBath77]

A new thread to follow on from the others about this case

@Jenny it's because the medication has not passed clinical trials for use in Charlie's condition so it would be completely unethical to administer it

Ultimately it's not about the parents that's another reason why, although they don't seem to get that.

Bore that seems possible but there does seem to be a link to MN. Of course we don't know how many other people outside the group have been sent the same email.
Certainly I have never posted on CA.
Petitions I sign aren't the obvious ones they would look for. I have signed a few about Trump though.

LovelyBath don't worry, working in pairs with very poorly patients is very common.
And even if they did feel nervous around you for whatever reason, we know that very ill patients, especially those who have had a bad experience previously, are justified in wanting to be in control of their care.

The type of situation I have referred to above is thankfully, not the norm.

Tbf really from some of the posts on CA, you'd think some were lawyers,doctors,etc because of the authority they post with(did you see the numbered post with "steps to save charlie") don't they realise that there are actual professionally trained and qualified people already doing all this? "Tell the solicitor to show them the MRI"

Give me strength.

reallyanother
It is possible to set up an unincorporated trust purely for the benefit of one child - but there is no gift aid or tax deductibility for donors
also HMRC always sniff around so you need v v v good records
(I've run a few for people)

Setting up a Charity takes a couple of months
and the bank account opening is almost the biggest nightmare because of MLR rules

NOTHING in anything I've seen to do with CA is a proper Charity or Trust. (and its my day job to know how to look)

Alabama I wrote back after to the consultant in charge and apologised and had a lovely reply. they said patients often get upset when things are not explained properly and they were sorry if that had affected me during my stay. So hopefully that is sorted out now. I actually ran out in the night from my little room as I was so scared and asked to go back in the ward, and they took an old lady in there instead! In the middle of the night. I feel awful about that. But it's in the past now.

Sorry for diversion btw.

There's a video of Connie's dad singing these lyrics to the tune of Loch Lomond on the CA page. Everyone started piling in saying it was so uplifting and they should release it as a single

And @lovelybath when I first qualified I often dragged in sister to very poorly people to support me and to affirm my judgement as you're still learning at first! Could have been as innocent as that,as even now I will call a more experienced staff member if in doubt xx

I work in adult dialysis, and in many ways it is far more straightforward because the patients generally make decisions themselves about ceilings of care and quality of life. However I've known quite a few previously on-board relatives suddenly try to reverse dialysis decisions once the patient gets sick, either by pressuring the patient, or by insisting that the patient "didn't understand what they were saying". It's a panic response as the patient's death becomes real to them.

I can see that the parents in this case may have happily agreed that Charlie's quality of life was awful and he shouldn't be kept on ITU forever during the first case (when they thought there was a prospect of sending him for a cure), but now that turning off the machines seems imminent they will do or say anything to hang on to him, regardless of his condition.

I have seen hysterical relatives refusing to let go of dead bodies after unsuccessful resuscitations, and this feels the same. Their media advice has been awful - their grief really shouldn't be playing out in public like this, it is like watching a car crash and will be hugely traumatic for them to look back on.

Same here Tinsel. The parents were very supportive of each other and as you say a great bond formed.

I get that it is unlikely to work and even if it did, the damage is likely irreversible but at least then the parents could have some closure. There must be a reason this isn't an option?? Other than needing emergency FDA approval.

Well I don't know! I'm not a doctor, I havent seen his case notes in person, but here's a vague guess, if you'll let me have a stab at it?

The medication can only be given to him while he's alive
To keep him alive they need to keep ventilating and supporting whatever other organs they are artificially supporting
They would have to continue doing this for the duration of the treatment
It is taking invasive painful (usually) equipment to keep his organs supported for all this time.
The longer he is on a breathing tube the more likely he is to develop a chest infection and dye painfully whilst on life support, as opposed to having the machines taken out and dying peacefully

Just because the meds go in his feed tube, do not mean they're harmless, the other interventions which they are using now to keep him alive do a lot of harm, carry a lot of risk.

The treatment might have side effects. Just because it's not delivered via a hurty needle doesn't mean it won't cause internal pain

I have visions of protest's outside the British Embassy in Washington DC as the USA has well established groups who will use it for their agenda.

:(

reallyanotherone, I did some digging around on that neuroscientist and couldn't find anything either.

No, it's not a registered charity so I have no idea why the admin is saying that the charity commission will audit it

Lexie yes it may have been something like that, I was very poorly and they realised late afternoon, I had bowel ischemia and a closed loop obstructions requiring urgent surgery (it is unusual and not as easy to diagnose as most obstructions, and also more severe.). Consultant was not available. So understandable I think. Hospital was on a 'black alert' as so busy. I think it gave me some experience of how scary it can be for patients though and how we can lose trust- they thought I simply has a tummy bug previous to this and it was a bit of a drama.

Anyway, back to the case.

Same here Tinsel. The parents were very supportive of each other and as you say a great bond formed

Yes I'm sure that's very common
But it doesn't appear to be the case in C&Cs case, and I was explaining why I think that's okay for them to be selfish, but for the mob behind them, not so much IYKWIM

Hope you're feeling better now lovely and it was a lovely gesture to write to the hospital afterwards x

There has been a lot of talk throughout this case of the 'parental rights' regarding Charlie. I underwent a court case regarding my own child when I wanted to move 150 miles away from her father, who I was separated from, so I could be close to my family. The message that I was constantly given from my legal team was that parents don't have any rights, they only have responsibilities, and I think that the two are very different. A lot of people who support Charlie's parents in wanting to try this experimental treatment, talk about their rights as parents to do so, and many of them also say that parents know what is best for their child. I'm afraid that I have to disagree. I don't think that parents always do know what is best for their child and that feelings of their own pain and suffering and grief can take over what is best for the needs of their child. In this particular case, it does feel like the needs of the parents are taking priority over the needs of the child.

Are they actually proposing they all stock up at the next sale for him? Are they taking the fucking piss?!

Fucking hell.

Thanks Lexie. I started my letter "I think you will remember me, I was that patient.." I didn't expect such a nice reply from the consultant. I think he did feel bad, as he wasn't there and wasn't what he thought. He sounded reassured I was OK.

I looked through some of the photos on the other Charlie FB page, he's wearing the same t-shirt (mummy's little soldier) in a photo taken at the start of May as in the photos last week, so it does seems like he hasn't grown much - way back in the thread someone mentioned that his aunt said he was still in 9-12 month clothes but thought he looked much bigger.
Poor wee soul.

I doubt any credible evidence is capable of being lodged tomorrow which meets the judge's criteria so if the hearing is set for 10am Thursday I assume the final decision will be made very shortly thereafter

I'm not so sure ... after all, counsel's answer to the judge's "have you found any evidence for me?" isn't going to be a simple "no". They'll probably bluster about needing yet more time - some expert's ill or on holiday - the paperwork got lost, etc, etc

Whether the judge would then effectively say "no; you had your chance and now you're out of time" we obviously can't know

Just thought of something. You don't think this will now turn into some kind of negligence case? I can't see how they would have grounds though. As far as I'm aware it has to be 1. Something another doc / surgeon in same position would never do 2. That actual has then caused harm.