Alfie Evans

[IcySlippy]

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

Anyone following this?

Yes I'm following it.

Heard about it briefly. There should be legal aid so parents can go to court without fundraising and decision include other treatment option. That way no need for fundraising. Demonstrations should not be allowed at any of the hospitals involved, special email if people must make their views felt and even a phone line if it will stop potentially clogging up hospital phones or worse harassment/abuse.

Another very unfortunate case that the nhs can ill afford to go to court over.

There not outside hospital just the court case it's just to support the parents it's not aggressive behaviour or anything Alfie has touched a lot of hearts.

So very sad. Both sides obviously want the best for Alfie, and I think it's clear what is best - and the answer is tragic.

Another very unfortunate case that the nhs can ill afford to go to court over.

^ As a parent you clung to anything to protect your child. Show some respect to his poor parents who are clearly heartbroken.

Incredibly sad. And the poor parents are only kids themselves.

Another very unfortunate case that the nhs can ill afford to go to court over.

No, you can't criticise on the basis of cost. Parents/families/patients have to have that legal recourse. The alternative is unthinkable.

This is a situation that will be so very hard for the parents to understand. If Alfie is only in a 'semi' vegetative state (what an awful term, I wish we could find a more pleasant one), then he will be moving, and seeming to respond to stimuli. It will be very hard for his parents to understand that those responses are random and not linked to what they are doing.

He's their boy. He's so little. I think it's very different if an adult becomes like this. Relatives can reason it out. "This isn't Terry. He would hate to be like this. He wouldn't want to live his life just hooked up to a machine, not able to do anything or move anything, etc."

But he's a little baby. He's just sleeping on their lap. Babies do sleep on your lap when they nap. They don't have hugely established personalities that we can refer to and say "this isn't x". We're designed to cuddle and protect babies and young children.

The doctors will be working hard, and they'll be frustrated that they don't know why he's so ill. But court is the right place for the decision to be made.

I think I'm right in saying is that what Alfie's case has in common with those of Charlie Gard and Isaiah Haastrup, is that the parents of each have a strong religious background, be that personal or cultural. It's hard for medical explanations to counter that.

Desperately sad. As before, will the army commit to helping with the 24 hour care these children will need for life? Even if they survive beyond babyhood, becoming severely disabled but no longer cute babies?

Because that is what will be needed.

Well said lougle

It is very sad, I can understand why his parents are fighting as much as I can understand that the right course of action is a very sad one.

Ah how tragic but it's easy to be objective when its not your child it is different to the charlie gard case though charlies parents had answers even if they didn't want to accept them , social media never helps in cases like this , people jumping on the bandwagon with very little knowledge .

I don't understand why there isn't a legal team?

It's the same all over again, isn't it? All the "Alfie's Army" stuff outside the court.

Just.....no. Let the doctors do their job and minimise the child's suffering.

The parents did have legal representation. Dad dismissed them, seven apparently.

Blue, that's incredibly patronising! The parents are young, but they're hardly kids fgs. They're 20 and 21, not 14 or something.

Having lived this situation and currently dealing with a family being denied heart surgery for their daughter who has the same condition as mine I no longer judge either way.

It is rare that parents are deluded and ignorant of reality and not so rare that communication between doctors and parents is poor. Even the judge has criticised the doctors in this case. Often this comes down simply to a difference in values. What is the value of a short disabled life? Research amply demonstrates that doctors consider lower levels of disability as incompatible with continued life than parents do.

Who is right? In our disablist society it is often considered better to die than live with severe disability but perhaps our values are wrong. Suffering and joy are both hard to determine in someone who has very limited ability to express themselves. Is it the doctor who sees the child for 20 minutes a day or the parents there 24/7 who have the most accurate perception of the child's experience?

All it takes for any of us to be in the same situation tomorrow is one misfortune. All it takes for us to be labelled ignorant, deluded and in sad denial is one disagreement. May none of you ever have to live such a time where you are powerless and fighting an institution which is defended to the hilt always even when they get it wrong. An institution which you yourself had defended until now. May you never live the denial of your reality with the ultimate outcome the death of your child. Most of us who have were you yesterday.

@specialsubject I doubt it, I can guarantee most of that army have long forgotten about Chris and Connie by now. They wouldn't do anything practical at all

I also get the impression that this is largely coming from his dad and that his mums just trailing behind because it's expected

Is it the doctor who sees the child for 20 minutes a day or the parents there 24/7 who have the most accurate perception of the child's experience?

Or another way of looking at it: is it the doctor who has 5 years of medical school and 20 years of training who can best judge, or the non-objective parents who have no background in paediatrics or neuroscience?

I think in this case he should have the chance of further treatment. Alter get haven't found a diagnosis for him, he's also massively sedated. In the videos his parents posted he's clearly responding to his parents voices and touch. Doctors themselves have said they can't say either way what's going on so let them find out.

God, I know kids in similar states that attend my kids school. Kids who are so disabled they're wheeled in on beds. They have a life, it's the only one they know and they're here to feel the sun on their face.

And that is the exact issue. Denial of experience. If you sit on court hearing how your child cannot do x, y and Z and how your child is suffering when you do not see that and you do see them doing x, y and Z, why are they more likely to be right than you?

In this case even the judge has pointed out the inaccuracy of the doctors and how their descriptions of Alfie's condition are at odds with video evidence.

Your comment also amply demonstrates the extreme power imbalance that parents face when challenging doctors. They can never share their reality because the doctor as God narrative still permeates society. Parents are not objective but neither are doctors they bring beliefs and values to their work. Our neonatal consultant hoped we had a stillbirth as in her view this was a better outcome than a living child with a severe disability.

Also Alfie Evans is able to suck on a dummy. That takes a lot of complex brain function. I really do think he deserves a chance, this is very different to the Charlie Gard case. Even the judge has criticised the way doctors from Alder hay have behaved (( laughing and joking in the court ))

I thought sucking was a reflex babies are born with?