Am I alone in feeling bewildered?

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.

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?

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

Very well put, grandetantJE65.

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.

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.

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 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?

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.

Menopaws,my heart goes out to you.

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!

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.

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.

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.

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.

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.

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.

Who are these people who want to disrupt the running of a hospital? The staff are having a difficult enough time as it is without the 'mob rule'. No hospital would want a child's life to come to an end. Where is respect for all those other families in the hospital?

Doctors don’t know everything. While I think that in general there should be a limit placed on the cost of treating one person, regardless of age or anything else, at the same time ‘miracles’ happen. Look at this article about a man with almost no brain who lived a normal life!
www.iflscience.com/brain/man-tiny-brain-lived-normal-life/
The little boy looks adorable and if he were mine I would fight for him, but within limits. It would be nice to think he could go home and enjoy a peaceful life surrounded with love but, if nothing else, the publicity might make that impossible.

I allowed the doctors to turn off life support for my husband as the prognosis was dreadful. My three sons were there with me and we all replied "yes" in unison when the medics asked the question. Not one of us has felt guilty.

Omg beau how terrible, who in their right mind would do that? I hope DGS is ok and getting over his op. These pro-life mobs should be ashamed of themselves.

Menopaws .
Two of my children are disabled & 30 years ago we went through the trauma of being told that we both needed to stay at the hospital as my daughter wouldn't last the night. She did & 30 years on has a good quality of life.
I have spent most of my working life dealing with Court of Protection cases & it has really shown me the effect that profound disability of a child (no real hope of independent life) has on a lot of families.
Many couples separate & it has a profound effect on siblings, who often feel pushed out & rather sidelined. The child often ends up in residential care with a poor quality of life (through no fault of the parents).
I do not doubt the fathers love for his baby but what will happen in the future when he is 31, 41 etc?
I really have no words to say about rent a mob & their intimidation of the staff, patients & visitors to Alder Hey hospital.

Menopaws That is a moving post. I have asked the people screeching online about this that he is 'entitled to have every chance of life' exactly what they think that life would be like but they never respond except to say more of the same.
My sister works with adults with severe learning difficulties many of whom also have behavioural difficulties and now that people are living longer, she often has to help their parents who can be in their late 80s. If the adult child cannot for any reason get to the day centres, their parents are in a very difficult situation.
I am sure that many of these demonstrators are also people who complain about disabled people getting benefits.

There is a lot more information coming out about these demonstrators. Some of them are from American pro-life groups who are the same people who protest outside abortion clinics.
According to the Times, a man claiming to be a lawyer told them that they had the right to take the baby out of the hospital. He turned out to just be a law student.
There are the most ridiculous comments online saying things like he is going to be given a lethal injection and so on.
I believe in protest and have been to many but I do have problems with loud and aggressive protests outside children's hospitals especially when they are very close. The police will try to pen demonstrators outside courts or Parliament which is annoying but it is justified outside hospitals which need greater protection. These protests will escalate every time hospitals have to take this kind of action and they need to be discouraged for the benefit of other patients, visitors and their parents.

menopaws

I am sickened by the pope's involvement in this - how can he allow himself to be sucked in to this media circus?