Am I alone in feeling bewildered?

A very sad case, and also many sad life stories among Gransnetters. Thank you all for sharing with us the difficult times and difficult decisions you have had to make as you walked along the path of life. Especially thank you Menopaws for sharing the sad but bitter sweet story of your grandson.
My heart goes out to you all.

Menopaws very brave! I do wonder if all this could be prevented by the parents having access to counselling from a specialist psychologist at an early stage. I do believe that it can arise from medical staff not explaining the circumstances in ways that the parents can truly understand. It then becomes a 'them and us' situation which the lawyers are only too happy to profit from. Then come the camp followers and the religious nuts and before you know it you've got a 'celebrity' parent, for all the wrong reasons.

Unfortunately they will be influenced by cases where doctors were wrong.

I know I would find it hard to accept the decisions, there would always be that "if" in your mind.

Thankyou to all who have shared their heartbreaking stories here. And to those who have been able to be objective in weighing things up, often as a result of their professional training. I’m appalled to hear that “professional” pro-lifers are involved in disrupting the lives of families with sick and dying children. I’m a Catholic but totally agree that the Pope has no business involving himself in this, he is apparently forgetting the little boy at the centre of it all.

I think these awful people can best be described as the 'rent a mob' brigade, who seem to positively enjoy turning up in situations like this and making a complete spectacle of themselves.

Shameful.

I have twice been asked to sign a petition about this, but have refused as I don't feel I have enough information or understanding about this child's condition. I watched a couple of programs recently about who has the right to take away a child's life and it was so, so sad. It was never just considered by one person, but there were meetings with every single person responsible for a child's care plus the parents. There was one case where the doctors did get it wrong, but in saying that, the child was left very disabled, but the parents were happy to look after said child. You do have to wonder though 'if it was my child, at what point would I give up the fight'. There are never going to be any winners or losers, but I do wish the 'mob' mentality could be taken out of the equation.

This has totally got out of hand, these" jobbos" are causing distress to other children and parents at the Hospital, what right have they to threaten the staff who are doing a fantastic job, I have worked in Alder Hey Hospital and the children there receive the best care in the world.
Alfie need to die in peace!

Menopaws,my heart goes out to you.

Menopaws, big warm hug to you.
What a very brave, moving and informative post.
I do feel for little Alfie's parents and would hope that I would find the strength to fight in their situation but also the wisdom to know when to stop.

I agree the child is the top priority but doctors are not always right. What about the other child who docs said had no chance, parents fought in court, eventually' kidnapped' their own son to take him to another country, were arrested and a couple of years later after treatment abroad the child is fit and well? How could any parent disregard that?

Rent-a-mob! Giving absolutely no thought to the distress they’re causing to other patients and their relatives. Have these people no jobs to go to?

I can't comment on the child in question, as I just do not have the knowledge to comment on his situation, it is desperately sad,

I do feel very strongly that while everyone has a right to their own opinion on ethical and moral matters and the right to express it, we do not necessarily have the right to express an opinion anywhere and everywhere.

Surely any hospital should be allowed to function without a mob of noisy protesters outside? And without staff feeling intimidated.

Perhaps the law needs to be changed regarding where people may stage demonstrations. Protesting this kind of situation outside the hospital concerned just seems entirely wrong to me.

I'm afraid the "rent a mob" outside the hospital are an absolute disgrace and their behaviour is despicable. They don't care about this poor child, they just want to be as disruptive as possible. Who do they think they are? They do not care about any of the children in that hospital, and how distressing and frightening they are making it for all who are at the hospital (staff, sick children, distraught Parents).
Yes, the whole thing surrounding this poor little soul is tragic, but the medical staff know a heck of a lot more about it than any of that rent a mob or the rest of us, come to that.
It's terribly distressing for the Parents, and of course, they want to do everything they can, but the sad reality is, for this little boy, there is no miracle cure. He won't have a quality of life, he would just be existing, with the aid of machinery. To my mind, doing that (letting him just exist without any hope of life quality), would be just cruel.
There's no happy ending for this situation, whatever final decision is reached, unfortunately. I wish there was. I wish a magic wand could be waved to make his brain whole again, and fully restored, with all senses intact, but there isn't one. A very sad situation.

Very well put, grandetantJE65.

? menopaws.
A very honest and thought- provoking post.

I'm guessing that in the UK, loved ones have something called an 'advanced directive' or similar legal instrument.

Stated more simply, it means that someone (usually the closest next of kin) is given express, written permission to make life/death decisions when a loved one is so incapacitated, they no longer can. This is to protect someone from being kept alive indefinitely with no chance of recovery.

Unfortunately that is not the case with minor children who are not old enough to put their wishes in writing. When parents decide it's time to let go, all hell breaks loose and if they ask for more time, then often it's the courts that step in wanting to end life...and in the middle of all this, the meddlesome protesters stirring the proverbial pot.

Why can't lawmakers (on both sides of the pond) come up with legal strategies to resolve these cases more justly and more humanely? Often these decisions are made for purely economic reasons (i.e. cost of life support). So, how sound is it for (otherwise disinterested?) third parties to make life and death decisions surrounding someone else's minor child?

People have no confidence in the NHS anymore, and perhaps think that the decisions being made are financial and I have wondered if this had been a royal baby, that they would make the same.
A lesson to be learned in all these cases is as soon as your child gets an illness like this I’d to get a power of attorney for health, then the parents can make these decisions for themselves.

The child should be allowed to live or die as his own body one will dictate. Turn off the machines, if his body is capable of living then it will do so, if not then it could surely only be a happy release for this poor little soul. We would have put a much loved pet to sleep to stop it suffering any more. Do we care more about an animal suffering than we do for a child?

Marianne1953.
I have every faith and confidence in the NHS.

There are hundreds of other parents up and down the country going through their own nightmares with disabled babies and that mob outside the hospital is a disgrace. There are doctors and nurses working long hours and having to negotiate that racket and hatred going to and from work. My heart goes out to the parents and little boy as I'm sure I would be doing exactly the same as them, wanting to save my child's life for as long as possible. someone called that crowd a lynch mob, they see an opportunity to get themselves on the news

I believe the family are being manipulated by a right wing Christian organisation . The parents obviously care about their child but are being misled

marianne that is a ridiculous thing to say.
It is not a question of money, it’s a question of the poor child having a degenerative neurological condition for which no treatment exists.
And parents do not need a POA for their children. As parents they already have the legal right to make healthcare decisions on behalf of their children, as long as what they want is in the child’s best interests in the opinion of the doctors who are treating them, and the Court in difficult cases where agreement can’t be reached.

Hear! Hear! janeainsworth!

Thank you for your thoughts , humbling but appreciated, I really hesitated before posting as I'm not keen on attention but felt some truths were in order and just a bit of information from my heart.
Trust me we are a very happy family and my son and wife have a very and happy full life and include their lad all the time and thanks to carers and Chase they get time to themselves too.
The little girl has provided stimulation and joy to the boy and she signs to him, doesn't bother talking although she could because she signs all she needs and we sign to them both (he's 4 she's 15 months), it is so sweet to watch.
We have learnt so much and heard stories that have opened our eyes and we've also seen the medical professionals at their best.
I believe everyone has at least one crisis in their lives and it teaches you to see the positive hopefully and to be a more understanding and compassionate person in general.
My best wishes to all those people on gnet who have, are and will experience difficulties in their lives.

I'm not sure how to express this without sounding heartless but perhaps very ill people can be the victims of the successes and advances in care made by the medical profession and that, these days, a patient's death is seen as a failure.