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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:
confusedlittleone · 11/02/2018 10:21

@RunningOutOfCharge not all babies especially those with neurological conditions

ItsAllABitStrangeReally · 11/02/2018 10:50

Running, not all babies. Very brain damaged babies often struggle to suck.

My friends son was born with catastrophic brain damage, they actually did switch off his life support. When he didn't die they were given the option of withdrawing food and fluid (( as was the norm 20 years ago )) of course they refused (( who wouldn't?? ))

I can still remember her saying about a doctor walking past and saying that babie's sucking on a dummy. He needs a lot going on to be able to do that. And they were sent home to see what would happen basically.

He's still here. He's very disabled but is mobile. He can't speak but can play with his dogs and loves watching CBeebies and music.

He doesn't have the sort of life I'd enjoy but it's the only one he's ever known and he's happy. He certainly has a life worth living. He like Alfie Evans suffered out of control seizures for years (( in a cruel, twist of fate he developed normally until toddler hood then all the seizures caused massive damage )) but after being in pretty much constant status, epilepticus has been pretty much seizure free for years.

I'm just uncomfortable with making these massive decisions without giving any chances when there are signs of hope. I'm not overly sentimental. Having disabled children means I've seen a lot of death and suffering. I think in some cases then a decision needs to be made to end life. But in this little boys case I think he deserves the chance to at least find a reason and be given a diagnosis.

RunningOutOfCharge · 11/02/2018 10:57

Well haven't the doctors been doing exactly that.... trying to find a diagnosis

Have they not come to a conclusion

lougle · 11/02/2018 21:36

Many kids in special schools have no diagnosis from start to finish. There's a project called 100,000 genomes, which is a genome mapping study. It's doing whole body genome mapping of 50,000 people with learning disabilities thought to have a genetic origin, but no diagnosis, and 50,000 people with cancer. My DD1 has been in the study since Nov 2016. She was in the DDD study for 4 years before that, which was a smaller scale version. She's had her no diagnosis-diagnosis for 9 years now.

SuperTimbs · 12/02/2018 06:58

Even the judge has criticised the way doctors from Alder hay have behaved (( laughing and joking in the court ))

Did this really happen?! If so, that is absolutely dreadful behaviour.

Vevvie · 16/02/2018 09:22

I don’t think the judge has criticised the medics, he asked for explanations of the videos showing the baby appearing to have reflexes.

www.google.co.uk/amp/s/www.liverpoolecho.co.uk/news/liverpool-news/powerful-videos-alfie-evans-forced-14264767.amp

confusedlittleone · 20/02/2018 18:54

The judge has ruled they can end life support

Samcro · 20/02/2018 19:03

i feel so sad by this, poor littlelad and his poor family
I often wonder how a judge can actually decide these cases
Have they been to medical school.

LondonHereICome · 20/02/2018 19:05

I think that's a sensible decision

Samcro · 20/02/2018 19:06

Why?
Why is it sensible? What an odd thing to say

SpitefulMidLifeAnimal · 20/02/2018 19:10

-I often wonder how a judge can actually decide these cases
Have they been to medical school

No, that's what expert witnesses are for.

Samcro · 20/02/2018 19:14

Thanks i wasnt sure, so iassume his parents would be included as experts

throwcushions · 20/02/2018 19:23

No Samcro. Only medical experts. The parents' team will include medical experts though.

DianaPrincessOfThemyscira · 20/02/2018 19:34

I haven’t followed this but I live five minutes from Alder Hey and on Sunday there was people out and about with placards etc.

I am not the parent of a disabled child, but I’ve always believed that my right to a live child doesn’t trump my child’s right to a dignified death, if they have no quality of life or are in pain.

A terrible and tragic story for all concerned.

GnotherGnu · 28/02/2018 16:55

I think in this case he should have the chance of further treatment

But what further treatment? No-one has put forward any treatment that will realistically even stop the degeneration of his brain, let alone reverse it.

I see the appeal is to be heard tomorrow.

RhubarbYoghurt · 28/02/2018 19:22

I spent a lot of time with a young family whose beautiful baby was on a ventilator. Said baby was due to be removed from ventilation due to what doctors described as catastrophic brain injury. Scans and a massive series of tests told them that the baby would be unable to survive, that they would pass several moments after the ventilator was turned down.

I pointed out that baby was licking tubes and was told that it was a reflex. I spoke to my husband who worked in brain injury and he thought I was grasping at straws and needed to get a grip of myself to support the family. He felt that the doctors had it right and I agreed with him after a gentle chat.

Beautiful baby had their ventilator removed and it was the most traumatic thing I had ever witnessed. I have a disabled child myself and have seen some traumatic things in life. But keeping yourself in check whilst supporting others is what you need to do. I don't think I will ever get over what I saw.

After 15 minutes of continuous breathing doctors realised that baby was not going to pass away. And after 3 hours was moved to a ward. A while down the line and baby is alive and whilst brain damaged and in need of a lot of care, can smile, make eye contact and appears to be happy.

Apologies if this reads poorly but I don't want to put the family who may recognise the circumstances and have tried to make the child's gender woolly for the same reasons.

RhubarbYoghurt · 28/02/2018 19:27

I think my point is that sometimes no one really knows. You can have the most amazing experts to hand and they can't guarantee that their diagnosis/experience/shared knowledge/ hopes will get it right every time.

Sometimes what one person seems no quality of life, is enough for someone else. The only ones who can tell how much they love that person is their family.

Whilst the little boy would need a lot of care and time. His parents want to have the chance to make his choices and not medical staff. Don't we as parents want to make decisions for our babies.

I don't always make the right decision for my children. But I do my best every day.

Birdsgottafly · 06/03/2018 15:09

They've lost their final appeal. My heart goes out to everyone involved in this, especially his Parents, of course.

cinderellawantstogototheball · 06/03/2018 15:22

Everything about a case like this is tragic. Everyone wants the best for the child. It's just so sad, your heart breaks for the parents and the doctors who are doing their best.

When my mother died, she had a week or so in a coma after a catastrophic brain haemorrhage. We were given a day of blinding hope when a nurse (who was an excellent nurse but sadly struggled a bit with English and therefore getting across her point) said they had taken away a tube because: "she didn't like it, so she bit it."

We were convinced this meant there must be a spark of brain activity. Only the next day did another nurse correct us by saying kindly no, her colleague would have meant a gag reflex. It was totally unintentional but it did make a nightmare situation even more painful.

Bad enough then - but with a little baby when you only have a dr's word that anything is a reflex and not a sign of brain activity - god, you can't blame the parents for wanting to cling onto any shred of hope. Heartbreaking.

TheFirstMrsDV · 06/03/2018 16:47

It is indeed heartbreaking and my thoughts go out to Alfie's parents and everyone who loves him.
The judge has had nothing but praise for the way they have conducted themselves during this awful time.

I hope they are getting good support.

confusedlittleone · 06/03/2018 19:23

@Birdsgottafly they still have another legal route this won't be the end of it

Tessliketrees · 12/04/2018 23:12

The Echo should be fucking ashamed of themselves (if such a thing were possible for the press). They have loved every minute of this the sinister sick fucks.

Headline states -

Merseyside Police monitored the situation but the large-scale protest appeared to be peaceful

Final line of the article quote police as saying-

Please note that access to the hospital is currently being disrupted and protesters are asked to be respectful of other patients and visitors trying to access the location

Yeah, if you are blocking access to a fucking childrens hospital you are not peaceful.

Keepgoingdontstop · 15/04/2018 20:22

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SunnySkiesSleepsintheMorning · 15/04/2018 21:56

I find it hard to believe the “ward stunk of cannabis”. Surely someone in the intensive care unit would have noticed....

Keepgoingdontstop · 16/04/2018 00:36

Well she wouldn’t just say that!! Nurses are not allowed to speak out about anything!!!