Am I alone in feeling bewildered?

Like all in here my heart breaks for the parents of this terminally ill child. I do however feel nothing but disgust for the demonstrators outside who are intimidating staff and the families of other children being treated there. One wonder how many of them would be around to help the family if by some miracle Alfie survived. Feeding a baby and changing its nappy is one thing, doing the same for a massive 25 year old is quite another. I mean no disrespect to anyone dealing with a similar situation, it just makes me so angry to hear and read the ignorant and slanderous comments.

I'm sure there must be people there who have a genuine belief that the child should be given a chance to survive, but there are also people who just like to jump on bandwagons and shout loudly, without having a great deal of insight into what exactly is happening. They remind me of the sort of mobs that turn up outside courts. It is disgusting that, in cases such as these, doctors and nurses - the people who are dealing with very sad and difficult cases day in and day out - have to endure the insults and threats hurled at them by some of these people.

My understanding is that it is the doctors' opinion that the child has a degenerative neurological condition and is already profoundly disabled. In my view, it was right to remove life support because if a child or adult cannot function without being artificially ventilated then they are not really alive. However, at the moment the child is breathing on his own and I think it is right that he be given water and any other support to prevent pain and discomfort - and I'm not sure if efforts should be made to feed him. It is very difficult for people who have no medical background to know what is the kindest and right thing to do. On the other hand, as paddyann says, doctors aren't infallible.

I do have a great deal of sympathy for the parents and agree with paddyann that the boy's father, who is only 21, should not be judged for pulling out all the stops to do what he believes is right but, as Day6 said, I wonder whether he has though about what sort of a life this little boy would have even if he were to survive - and how that would impact upon him and his partner, their future relationship and any children they may have. From what I have read, the little boy would have to be fed intravenously, would be unable to communicate, might not have a swallow reflex, etc, etc. It's not the sort of life I'd want for myself or for anyone close to me.

My grandson is peg fed, cannot speak or walk and never will, laughs and smiles and understands everything and signs and adores his little sister.
He is handsome and loving and does as well as he can at special school.
His parents have amazed us in their care for him.
However he is getting bigger and needs the house adapted and filled with equipment soon.
He cannot be entertained with any one thing for more than a few seconds and is very demanding for attention.
If he cannot make his wants understood he has massive head banging tantrums, striking out etc which can only be stopped by physical restraint, he is strong top half although weak bottom half. My son is pretty much the only one who can do this. He has taken on full childcare as his wife is able to earn well but means long days in the city to make it work.
Without restraining the tantrum he stops breathing and needs resuscitating by parents or carers or the called ambulance men, who have permission to call it if he doesn't breathe for over nine minutes (he has reached 8).
Is this the life I want for my son and family. Not really.
Is this the life I want for my grandson. Def no.
Has this taught all of us something about life. God yes
Am I grateful for that. God yes.
Would I change anything. I don't know
Do I wish he had died a baby. Honestly yes
Am I glad to have him and know him and love him. 1000% yes.
One night or one day he will not restart, it is not always tantrum related, he has been known to stop mid a happy meal time.
He was never on life support so we never had to turn anything off but as others have so rightly said, cuddling a sick baby is actually lovely, dealing with a bigger child/man is quite another.
Our chap isn't suffering as such and people worldwide have much much bigger issues than us but let the doctors make their decisions and let this lad at Alder Hey go peacefully out of the bloody media because as big and clever as it sounds to want them to live whatever it isn't much fun.

Brave, brave post Menopaws

Menopaws kind thoughts to you and your family

Being childless perhaps I shouldn't be posting on this thread but I do admire the father for doing all he can for his child.

However, I do not admire the crowds outside the hospital. Asking those inside to do everything to cause disruption is ignoring the needs of the other patients there, if they want to stand outside peacefully then that is fine but shouting, attempting to storm the building and intimidating staff achieves nothing. These protesters will not have detailed information about Alfie's condition yet feel able to try to intimidate caring medical professionals who would have thought long and hard before making the heartbreaking decision to switch off the machines.

Thank you Menopaws.
What this courageous father (and of course, mother, who has been quieter) need is quiet words from someone like you. That is not what he is getting from other people with their own agenda.

Meno The parents of little Alfie need people just like you to speak to them and not all the pro life/ anarchist type trouble makers they have at present.
All the people quietly getting on with hard and heartbreaking at times lives.

Menopaws I echo what others have said - a very brave and enlightening post.

Menopaws, another echo of what others have said. The behaviour of many of those in so called Alfie's Army has been appalling. Causing distress and disruption at a children's hospital is disgusting. Reports this morning indicate the medical team involved have been on the receiving end of threats.

Menopaws

I respect your post so much.

Menopaws . Thank you for your brave and achingly honest post.

There is no better way to describe people like that other than to say they they're idiots. The child was managing to breath on his own when the life support was switched off but for how long that will go on for is anyone's guess if it hasn't already stopped. So rest in peace little one.

It’s a very difficult situation, and for one I would not like to be in that place.
It must be heartbreaking for them. What can you say, we,don’t know enough about the case really to make a comment. I know Dr.Hilary said on good morning Britain this morning that the chemical in his brain is probably helping the little one to breath but who knows how long that will last. Very sad looking at his father is heartbreaking they will need a lot of help if there baby dies. I wonder how Charlie Gards parents are now.

Menopaws I respect you and your family. {flowers}

Sheilasue it’s not if their baby dies it is when

Unfortunately it pulls at peoples heart strings and it feels like a battle against all odds. The little man standing up against the giants .
Look at how long the Stephen Lawerence case lasted.
We all like to champion a good cause.

menopaws

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

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 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.

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.

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.

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.

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.

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?