Meet the Other Phone. Only the apps you allow.

Meet the Other Phone.
Only the apps you allow.

Buy now

Please or to access all these features

News

See all MNHQ comments on this thread

Alfie Evans 7

926 replies

StayingAtTamaras · 26/04/2018 23:25

Continue here

OP posts:
Thread gallery
6
SilverySurfer · 27/04/2018 20:09

MynameisJune
Surely even Alfie’s parents aren’t that crazy, they realise they’d never be able to come home without being arrested.

I don't think there's anything they are not prepared to do to remove Alfie from the hospital. I hope hospital security is in full force inside and that there are police outside.

GinSoakedItchyPony · 27/04/2018 20:09

Same here Noeuf.

DrinkFeckArseGirls · 27/04/2018 20:11

oh ffs - this is embarrassing although I can totally believe it - a lot of Poles (well, I am one) are nutty about right to live, although mainly bothered about foetuses and not so much about adult disabled people.

MynameisJune · 27/04/2018 20:14

Nutrition and oxygen are part of EOL care as has been explained in previous deleted threads. It isn’t anything new that they are doing.

I’m not a HCP so I can’t say for sure but if his sats were dropping close to 60% then he was at risk of heart attack, or suffocating to death and clearly neither of these are dignified deaths and they can avoid those. It’s agreed that Alfie will die when his disorder attacks the rest of his brain and his organs start to fail. If he isn’t ventilated at that point then no amount of oxygen will help.

Panda81 · 27/04/2018 20:15

Rhodiolia I've noticed that he's on his tummy last couple of pics too, and wondered if there is some sort of medical reason for it. Unless it's just about pressure sores.

Noeuf I question it too. That first 12hrs seemed very serious with urgent requests for CPAP and masks etc. It seems like the additional oxygen has just been enough to stabilise him for now but obviously we can't know how long that will help him for.

Something I've considered what the legal stand point would be... the EOL plan that was leaked named some medication which would be used for comfort if necessary. Do parents have a right to say it can't be used? Because AA went beserk about the link to lethal injection/euthanasia etc. So I think TE was against it. Or does the court rule that the hospital can administer it if they think Alfie is in discomfort?

SouthWestmom · 27/04/2018 20:17

Yes cocoa and gin from those desperate pleas for oxygen and anger over no fluids he is now apparently surviving (no dummy) and back with some forms of support taped to his face.

Possibly it's to prevent the family doing anything themselves and is just a placebo but for him to be surviving now in limbo is incredibly hard for the family I imagine.

When my grandad was ill we lurched between despair and boredom tbh at his bedside and those hours are never truly peaceful.

FrancisUnderwood · 27/04/2018 20:17

With the addition of the sinister intervention from Polish quarters this is becoming more and more like a dystopian hellish nightmare Black Mirror episode every day.

MynameisJune · 27/04/2018 20:18

@panda the EOL is now court mandated. The hospital can give Alfie the meds if they deem it necessary. If the family disagree then I’d guess it would be back to court. They went back to court when AH altered the time of extubation because it deviated from the care plan.

Sozzler · 27/04/2018 20:19

There is an awful lot of speculation on some of these comments. Some posters seem intent on interpreting things to suit their own preconceived opinions.
The Gards wrote a facebook post offering support and sympathy to Alfie's family and saying that they hoped much of the work they had already carried out regarding legislative change would help shape any proposed laws in this area. Fair enough in my view.
They have stated that they have worked with a broad spectrum of people including health professionals, paediatricians, medical ethicists, lawyers and politicians in order to try and shape legislation that will be positive for all involved, not just parents. Surely this could be a good thing. Surely, it isn't in any child's best interests to have their parents fraught and highly stressed by legal fights when they are so poorly or to be stuck in limbo whilst numerous court battles draw out. A gentler, kinder and more transparent approach in these cases would be beneficial to all, especially the children at the centre of such cases.
Charlie Gard's parents have not stated at any point that this proposed legislative change would remove children's rights and put their best interests at risk like some posters have suggested.
I have followed these threads from the beginning and although there have been some lovely, informative and thought provoking comments, there have also been far too many people relishing in bringing titbits of information to the thread and twisting it to criticise bereaved and traumatised parents. I think it is a positive thing for people to discuss this situation respectfully and share their experiences, but at times it has been like watching vultures picking over the tragedy of a very poorly baby and it's been quite repulsive reading if I'm honest.

CocoaGin · 27/04/2018 20:20

But both the oxygen and the jejunal feed were removed initially - I don't get why they have been replaced, I suppose.

MynameisJune · 27/04/2018 20:20

@neouf as I explained above at some point no amount of oxygen will help Alfie. For now it’s to keep him comfortable. The plan was never to starve him to death so his NJ tube has been re-sited to feed him. Probably safer than the parents trying some random idea they got from FB.

MynameisJune · 27/04/2018 20:21

@cocoa because he is living longer than expected and the plan wasn’t to starve him to death or induce a heart attack.

SouthWestmom · 27/04/2018 20:21

June I'm not sure waiting for the disease to progress is in the plan, surely? That could be months.

I think AH thought he would die quickly. That's what I took away from reading the court stuff.

MynameisJune · 27/04/2018 20:25

@neouf yes they expected him to die quite quickly. It’s been 4 days which in EOL terms isn’t that long. His disease is quite aggressive in how quickly it has attacked his brain.

At this point It’s probably going to be keep him comfortable and see what happens. If this carries on then I’m sure they will re-evaluate.

There does seem to be a consensus that he struggles without ventilation. His mum asked for immediate intervention the other day in court.

SouthWestmom · 27/04/2018 20:26

June I'm not convinced . There's been differing explanations in previous threads saying that nutrition at EoL is not helpful and can do harm. If he has no awareness, he wouldn't recognise hunger either.

I'm beginning to feel (as a human not intellectually) this is wrong. Just something about putting the family through Monday and him turning blue etc and denying oxygen, food, and now him back on it.

lettuceWrap · 27/04/2018 20:27

The new picture on AA is so sad, he looks very very unwell indeed Sad

Most of the comments underneath are saying how well he’s doing, how healthy he looks, get well soon etc... I know they mean well but can’t they see the oedema, the skin tone? Do they think he’s just sleeping? Sad

CocoaGin · 27/04/2018 20:30

He does look bloated, poor darling Sad

Noeuf i totally agree.

Rhodiolia · 27/04/2018 20:34

lettuceWrap, I thought he looked peaceful and didnt see any signs of being very unwell (in his skin tone etc) Blush. I am not a HCP though.

youarenotkiddingme · 27/04/2018 20:35

The polish presence is quite unnerving.

But they clearly aren't secret detectives or very well under cover as they've given a heads up for 11am tomorrow 🤦🏼‍♀️

lettuceWrap · 27/04/2018 20:42

I’m not a hcp either but my dc has been hospitalised for a serious, but thankfully short illness, and I vividly remember that awful “ill” complexion.

DoryNow · 27/04/2018 20:43

I think the EOL plan was to include no feed as previously said. The failing body cannot digest it, & indeed it can cause vomiting or divert energy for breathing away from the lungs.

I suspect there was a lot of distress for the family when A was initially extubated, understandably, so some feeding was established along with nasal cannula for oxygen.

Please correct me if I've got this wrong.

MynameisJune · 27/04/2018 20:45

@dory the NJ tube was re-inserted for water at first. And now has been used for nutrition but what nutrition and how much we don’t know.

As i stated earlier it was probably less risky to give him small amounts through his tube than his family trying to feed him something themselves.

user1457017537 · 27/04/2018 20:46

This reply has been deleted

Message deleted by MNHQ. Here's a link to our Talk Guidelines.

whywhywhywhywhyyy · 27/04/2018 20:46

The statement from Charlie Gard's mum worries me greatly. It sounds like the law being proposed is going to try and overturn the legal principle that nobody, not the patient, nor their family, nor the courts, can demand a treatment that is against a doctor's best judgement.

lettuceWrap · 27/04/2018 20:48

That law won’t get passed. It just won’t.