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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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Alfie Evans

999 replies

IcySlippy · 01/02/2018 11:50

www.liverpoolecho.co.uk/news/liverpool-news/alfie-evans-parents-plead-sons-14231597

Anyone following this?

OP posts:
stitchglitched · 21/04/2018 12:41

The complaint from the other parent sounds shocking but that mother is one of the admins on the army page and Alfie's parents are the godparents of her baby. If she has concerns about his care she ought to be raising it with the staff and I hope she is, I'm not sure posting it in such a way that it further riles up the army is helpful to anyone.

TidyDancer · 21/04/2018 12:58

@stitchglitched I noticed that. You really can't take anything that woman says for gospel, she is heavily biased against the hospital and can't be objective in the circumstances. Clearly not all doctors and nurses are wonderful but I very much doubt that the Facebook post on question is either the absolute truth or an honest account of what they believe to be the truth.

whilstlersmother · 21/04/2018 12:59

Hope it’s OK to post this but as it’s already been talked about here, on the previous page, thought it should be.
This is on dignity4life about the baby Jacob in AH.

Just a heads up that the baby they are referring to is Tom & Kate’s godson and his mother is the admin on Alfie’s Army. So it’s very coincidental that she’s posted this up now to ridicule Alder Hey Hospital. Please don’t be fooled by this accusation.

stitchglitched · 21/04/2018 13:02

Yes I think that when the army don't even allow the court judgement on it's page (and it is clear the vast majority haven't read it) but take the word of any post against the hospital as gospel, then this frenzy they have whipped up is going to continue. People are now saying awful things about the hospital and it's staff off the back of that post including stuff about how anyone who has a child there should remove them asap. It is so irresponsible.

GnotherGnu · 21/04/2018 13:33

I refer to the argument made both with Alfie and Charlie Gard that these babies are actually fine and the staff are drugging them etc to make it look like they are severely impaired ...i wonder what the army says when someone asks ' why do you think the hospital is doing that ?'

In my repeated experience, they simply ignore it. They also ignore it when you point out that if the hospital really wanted to kill Alfie they have had countless opportunities to do so without anyone being any of the wiser - I suspect it would have been child's play to introduce an infection, fail to give medication, or be a bit too slow to replace a dislodged breathing tube. I think both points are just too complicated for them to process.

GnotherGnu · 21/04/2018 13:35

Another one they ignore is this report - www.cbsnews.com/news/associated-press-bambino-gesu-childrens-hospital-vatican-pope/. They'd be all over it if that report were about AH.

MorningCuppa · 21/04/2018 13:38

That's interesting stitch.

Yes she did say in the post that she had reported it to PALS and the ward manager.

miffytherabbit1974 · 21/04/2018 14:07

@GnotherGnu - you make some very interesting points that got me thinking.

The level of wilful ignorance on the part of the "Army" is astounding. I have seen this for myself on their FB page and on Twitter and I'm certain that if you told them the sky was blue they would say it was green, if they thought it would back up their argument.

Dissimulation, such as "Alfie is not in pain" (truth: doctors can not say for certain whether he is or not"). "The hospital should 'free' Alfie" (truth: even if they wanted to, the hospital, at this stage, can not legally relinquish their care of Alfie). "Alfie would get a diagnosis if he were allowed to go abroad" (truth: As a consultant has already said 'a diagnosis would not help Alfie' - the "army" are confusing a lack of diagnosis with a lack of treatment and care. For example, one can be treated for high blood pressure before one is eventually diagnosed with the underlying cause of the high blood pressure (kidney disease, say.) Conversely, someone might be treated for high BP and never even find out the underlying cause).

There are dozens of these chunks of misinformation flying about, and it surprises me that many from this "army" who claim to be so invested in Alfie don't even seem to have read the very readily available documents online, which simply and clearly explain Alfie's pathology and prognosis.

I wonder whether for some in and around the phenomena of Alfie's Army, it is more about being a part of a club or social group than it is about a real and well understand stand behind a strongly held belief? Some of the behaviour outside Alderhey Hospital has been very odd indeed. The evening when bazaar tents and a bouncy castle appeared on the grass verge, along with folks having wheelie competitions on their motorbikes "for Alfie", the selling of beer and trinkets along with general merry-making and reports of aggression and drunken behaviour don't really tally with the grave and heart-breaking subject of "defending" or being in solidarity with a child who has a terminal illness.

This all feels like an escalation and a few steps up from the Charlie Gard case. There's more hysteria, more reactive behaviour, more online abuse, and the father seems much more aware of how to utilise social media to draw attention to the plight of Alfie Evans. To a large degree, despite the horrible situation he's in with his desperately poorly son, he's been successful at this. The Just Giving page attached to those closely involved with him and Alfie's Army have raised well over £100k for expenses and treatment/costs etc. He's also become a familiar face, via interviews, on TV and in the papers. It all just leaves a weird taste in my mouth. I don't want to say anymore, but it does.

kirinm · 21/04/2018 14:17

I'm sorry but i can't believe that post at 11:06. A pillow over a baby's face and it only gets reported to PALS? Given that would be attempted murder, that would be straight intothe hands of the police. AH really need to start acting on some of this stuff as it's so out of order.

MorningCuppa · 21/04/2018 14:20

Tom Evans latest post to the Facebook page -

Lady Hale, Lord Wilson and Lord Kerr are the same three judges who upheld Alfie’s original ‘death sentence’ back in March.

We asked them to watch the recent videos of Alfie, and their decision now admits that Alfie “looks like a normal boy”. However, their paperwork still says his brain no longer exists, his life is futile, he may not be allowed to go, but must be made to die – all in his own best interests. Only the paperwork matters to these people – the real child does not.

This is not justice. This is a cruel, murderous bureaucracy.

We have instructed our lawyers to submit an urgent application to the European Court of Human Rights, and they have done so today.

We will not give up. We will continue to fight, by all means available to us within the law, to save our son’s live.

Correct me if I'm wrong but the European court of human rights can't do anything Now can they? Haven't they already been there?

kirinm · 21/04/2018 14:26

If it's a different argument to the one raised in the ECHR previously they can subject to permission. I'm assuming it's a different argument now they've got the Christian radicals assisting?

Puzzledandpissedoff · 21/04/2018 14:28

Cuppa as I understand it, the ECHR will consider any application made to them but not necessarily agree to another hearing ... and in this case I believe (hope?) that the chances of them agreeing are nil

The question, of course, is what happens then ... Sad

In the meantime, no doubt the hospital's lawyers are keeping a careful watch on allegations made by those close to Alfie's parents, which may or may not be accurate

Ollivander84 · 21/04/2018 14:36

They don't seem to get that about the diagnosis. For example I kill off my neutrophils. They treat it by giving me strong drugs so I produce more in the hope I can't kill them all off. But there is no diagnosis for WHY I kill them off, or why it started happening and they can't stop it happening

I just feel sorry for Alfie really. CG raised an interesting discussion between myself and family where my dad said "you don't even have to say you wouldn't want to live like that, I would have already known that"
But that's because he knows the joy I take in reading, riding my horse and a million things I wouldn't be able to do. Maybe it's harder because they can't see what he's missing with being younger, or they think there will suddenly be a cure. Or if he backs down that the "army" will be all "well you killed him"
No winners but the bravest and most loving and difficult decision a parent can make is to switch off life support

miffytherabbit1974 · 21/04/2018 14:47

I’m not a paediatrician, I’m not an expert, but I’ve watched some of the videos (in particular, the more recent ones) posted by Alfie’s father, and it’s immediately obvious that Alfie does not look or behave in any way like a “normal” (and by extension, healthy) boy. His gaze is entirely blank, his pupils are of mismatched size. Very rarely, there is footage of him moving reflexively, but it’s so obvious that these responses are not conscious interactions or anything even approximating awareness or consciousness. His body is entirely floppy, apart from these intermittent reflex reactions.

My older brother, John, died from an opportunistic infection. He had a brain injury which lead to permanent brain damage along with, what was in those days termed as, quadriplegia. I know it has become unfashionable and looked upon by some as heartless or somehow brutal, but it was almost seen as a release from the suffering and pain he’d experienced when he did die, even though his life was utterly irreplaceable and of as much value as all the rest of us on this planet.

I understand that we all deal with grief differently, and I’m assuming that this is what is driving Alfie Evans’ father to say some of the stuff he’s saying right now. It really seems like a very extreme kind of denial to question the actual imaging scans of Alfie’s brain. Scans which show irrefutable evidence of the damage this horrible illness has wrought. Indeed, one consultant has stated that Alfie’s brain is now more-or-less water, and only the brain stem is intact. This is the bit I am struggling with, because Tom Evans has obviously been told this. So it really boggles me as to why he would want to keep his son going when Alfie’s mind is no longer present. I guess it goes back to the original point in this paragraph - grief must just affect us all very differently. And I have to remind myself that Tom Evans is functioning under these conditions.

cocoabutterformula · 21/04/2018 16:06

Miffy so sorry about your brother Sad.

There are some wonderfully articulate and measured posts on this thread, one wishes that some of the 'Army' could be encouraged to read them but of course they won't as it wouldn't suit their narrative.

Grauniad · 21/04/2018 16:21

Sorry for the loss of your brother, Miffy. Were you old enough to remember him before his injury?

I had a severely disabled brother who was more or less left to die at a week old as the doctors felt there was nothing to be done. I don’t remember him at all as I was under two at the time, but from my parents’ account it was quite firmly taken out of their hands - they were told he wouldn’t live and essentially to go away and have another baby.

He could probably have had a reasonable quality of life these days (he had hydrocephalus).

I wouldn’t want to go back to the days of doctors playing god, but it seems clear that this poor child has no pleasure in life and no hope of improvement.

cocoabutterformula · 21/04/2018 16:38

Grauniad that is so sad. It does almost feel as though the pendulum has swung too far the other way now with the advent of social media and we are all suddenly our own experts, can you imagine 50 years ago not listening to doctors, teachers, police etc?!

bananasandwicheseveryday · 21/04/2018 16:42

Such a sad situation. There will always be occasions when the medical profession hasn't got it quite right with regard to outcomes, timelines etc. Some of those will be times when things turned out better than predicted, but there will be many when situations went the other way. I don't have experience of a child in anything approaching Alfie's condition, but I can understand why the parents would want to believe the stories when things turned out better than predicted. Sadly, I don't think there is anyone around them gently reminding them that so many people have looked at their son and have come to the same conclusion. Personally, I think the other hospitals have been irresponsible in offering false hope to the parents. I'm not sure they have been clear enough that the chances of Alfie even surviving the journey are slim and that even if he does make it to the hospital, he is not going to survive in anything other than his current state. To think another hospital would try to keep him alive until they can give a name to his condition, actually horrifies me.
Equally sadly, I think that when Alfie does die, his parents, egged on by AA, will blame AH for 'delaying ' the move which they do clearly believe will eventually lead to his recovery.
I hope that the ECHR make it clear that poor Alfie should be allowed to pass away with whatever peace and dignity can be afforded him AND that the parents are supported by people other than the baying crowd that is AA.

Grauniad · 21/04/2018 16:46

It was pretty much exactly fifty years ago, give or take. I just can’t imagine being told, ‘Leave him with us and go home —best not to get too attached.’

miffytherabbit1974 · 21/04/2018 16:52

I'm very sorry to hear about the loss of your brother too, Grauniad. These losses of loved ones leave a space that can't be filled, and are often accompanied with a sense of "...I wonder if..." and similar thoughts and feelings. I was five and John was eight when he died, so I remember him, although not as vividly these days as I would like to.

You make such a good point, and one that I had forgotten about, regarding going back to a time when some doctors really did behave like mini-gods - giving or withholding life according to their own particular value systems. There's often a complaint that hospital ethics committees and boards are too bureaucratic and interfering, but they are essential in preventing the kind of single-handed, and often on-a-whim behaviour of lone doctors making life or death decisions that often occurred in past decades.

miffytherabbit1974 · 21/04/2018 16:58

@Grauniad

"It was pretty much exactly fifty years ago, give or take. I just can’t imagine being told, ‘Leave him with us and go home —best not to get too attached.’"

This was very affecting and powerful to read. Again I'd like to say I'm sorry for the loss you and your family experiences, Grauniad.

Dinosaurchicken · 21/04/2018 17:00

I remember during the Gard case I commented asking a woman if she had read the court judgements.
Her reply ?

“Lol and u hav ?”

I told her that I had because I didn’t like to go around making statements without understanding the full situation.

Never got a response to that.

I don’t think a lot of them are even aware they can read the court documents.

miffytherabbit1974 · 21/04/2018 17:05

Sorry for the spelling mistake earlier, my last post should've said experienced not experiences. Apologies.

JediStoleMyBike · 21/04/2018 18:02

Pictures have started to go up of Alfie's alleged mistreatment, with pictures I notice on Facebook. Above this is a post made by a woman I used to work with whose brother's grandson has just passed away at Alder Hey, whose last week was blighted by the protests. It's awfully, terribly sad but surely the army can't think Alfie is the only sick or dying child.

IronicWitttUsername · 21/04/2018 18:12

The photos going up aren't good at all. But things happen sometimes. Like another child arrests so things like wiping secretions get pushed lower down list.

The burn type injury isn't good.

However these things are at a nursing level. It doesn't change the consultants of all the relevant hosp saying there is no hope of recovery.

2 totally different issues.