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Am I alone in feeling bewildered?

(92 Posts)
Rosina Tue 24-Apr-18 16:20:45

The sad situation of the little boy with what is said to be irreversible damage to what is left of his brain has been much in the news lately. I am finding it very difficult to understand the crowds of people shouting outside the hospital and the courts, and today I see they have been fighting with police to get into Alder Hey Hospital. To what purpose? What would they do if they did get in? It is understandable that friends and family will have strong feelings about what should happen and must have emotions that are running so high, but where do all the others fit in, and how much distress they must be causing to nursing staff and other small patients.

Situpstraight Tue 24-Apr-18 16:24:18

Where there are Press and TV cameras there will be crowds.
I wonder if they think about the upset they are causing to he family of this poor child?
Probably not interested and probably don’t care, as you say it will not make a bit of difference and is very disruptive to the staff and other visitors who have to pass them.

Anniebach Tue 24-Apr-18 16:34:23

It has become the done thing to protest loudly , their right to cause distress and upset , why they cannot just stand quietly is a mystery, expect they like the sound of their own voices

Bridgeit Tue 24-Apr-18 17:43:38

Me too Rosina, the I just don’t understand these people it is unbelievable .

nanaK54 Tue 24-Apr-18 17:47:24

It is all too sad for words.....

M0nica Tue 24-Apr-18 17:47:56

There is this belief, quoted by one of the protesters 'Where there is life there is hope'. I am sorry in some cases, there isn't - and anyone who has experience of terminal illness or irrecoverable injury knows that.

My heart goes out to the parents of this child, but I believe in there all encompassing love of their son, they are unable to see that by pressing for continued treatment for a condition that is untreatable, they are prolonging both their own and their child's suffering.

I see that this little boy is still breathing on his own, following the removal of his life support system last night and I hope for their sakes he is able to do so long enough for them and their family to spend, hopefully, a few days with him without all the paraphernalia of life support to give them good memories of his life.

Luckygirl Tue 24-Apr-18 18:27:35

It is simply the draw of the media, which need to take a hike and let this family deal with this sad situation in privacy.

The media love these sort of stories. They undoubtedly trawled various court reports to find something dramatic and tear-jerking to report on.

We would have known nothing about this if the media had not hyped it up. And sadly there are those who are happy to jump on the bandwagon and frankly do not have the subtlety or intelligence to understand - they will stand outside the hospital and get their faces on the news.

It truly is sick; and a sorry reflection of some aspects of modern living.

Luckygirl Tue 24-Apr-18 18:29:58

For the latter part of my career I worked on a magazine and was very careful what news I allowed to get into the vision of the editor -I remember telling him that a lad had been run over and his immediate response was "Oh - is he dead?" He got pretty short shrift from me.

Day6 Tue 24-Apr-18 19:10:19

Like the case of little Charlie Gard, I can understand Alfie's parents clinging to any hope that their son will live.

I think if I were in that situation I'd listen to the doctors, and the second opinions which they are bound to have asked for. Then I think, out of love and what is best for the child, I'd want the little one to die peacefully, surrounded by those who love him.

I can understand the parents clinging to any hope, but is there also a need for publicity, a need to make a case when there is none, a need to fight authority and the medical staff, even when they are giving the child the best possible care?

Is this the way society is going? Is it about "ME" now? I cannot help thinking of all the parents who have lost a child to a dreadful illness or condition who went through that awful trauma with dignity and courage and no need for the press or wider world to know about it.

MawBroon Tue 24-Apr-18 19:19:33

My thoughts are also with all the other parents of sick children in Alder Hey. Their lives must be hard enough without this extra publicity and hassle to add to their grief.
It is a desperately sad situation, and those of us who have lost a child of whatever age, but a baby or young child seems especially poignant, we know how we would have given anything for our baby to live at the time. With hindsight however, perhaps it was merciful.
Modern technology has a lot to answer for.
Turning off the life support for Paw because his poor body could take no more was heartbreaking and I would have given anything for it not to have been the least worst course of action, but I had to trust the opinion of those who knew the score.
As for the crowds outside the hospital, what bl**dy business is it of theirs anyway? angry

Bathsheba Tue 24-Apr-18 19:31:38

As for the crowds outside the hospital, what bl**dy business is it of theirs anyway?

Well said Maw. I despise this mob culture, parading as support. The poor family of the desperately ill boy are going through enough at the moment - they can surely do without a baying crowd at the hospital door, holding up posters and banners with pictures of their child. I know if it were my son I would want to rip the posters from their hands. What right do these people think they have to storm the hospital entrance on behalf of a child they don't know? How dare they presume to grieve for him? That is his parents' prerogative.

paddyann Tue 24-Apr-18 19:47:49

this just appeared on my FB page ,might give you some insight into the parents fight .

John May
6 hrs ·

Regardless of what you might think of Alfie’s dad.... the way he might come across .. there is men out there who don’t give their kids the time of day..

But this 21 year old lad has fought with everything he has got ... followed every possible avenue . When no options are left, he finds one. Has Left no stone unturned all for the love of his son.. just goes to show anyone can achieve anything with passion behind you. I think they are finally going to get what they have fought for. And am happy for them

*Raised funds to fight the decision in court
*Challenged the government many times with out giving up
*Created massive support by the people
*Support from and met the Pope
*Organised treatment in Italy
*Backing from European Parliament
*citizenship in Italy for his child
*Has a military plane on standby
*Effected a whole city like no one single person has before
*And never took no for a answer

All this whiles his child is sick and with no experience

At 21

And I take my hat off to him.

MawBroon Tue 24-Apr-18 20:11:14

Paddyann the one person who matters in this is the child.
Parents do not have absolute rights over what happens to their children, it is the welfare of the child which is paramount in law.
So while I can sympathise with the young father, (I have beeen there,) nevertheless, medical opinion is united in saying that the wee boy should be allowed to slip in his parents’ arms because nothing further can be done and he has no viable future. I can fully understand why the parents don’t want to accept this, but if that child is suffering, who are they doing it for ? Modern medical technology can technically keep him “alive” but to what end, is it a life?
Emotions are running high as evidenced by the somewhat garbled FB post, dare I say “uninformed”?
M0nica and others before her have said, just because you can do something, does not make it right.
Let him die in peace, let the parents grieve and let the doctors and nurses treating the wee boy exercise their professional judgement.

MawBroon Tue 24-Apr-18 20:11:57

“Slip away”

Baggs Tue 24-Apr-18 20:15:11

Well put, maw.

nigglynellie Tue 24-Apr-18 20:18:00

Excellent post MawBroon.

Bathsheba Tue 24-Apr-18 20:22:12

Hear hear Maw, spot on.

nigglynellie Tue 24-Apr-18 20:30:23

It's quality of life, not quantity, and tragically this little boy has, and never will have any quality of life. For his sake his parents need to let him go, and those demonstrators who clearly haven't a clue what they're talking about, need to 'go home' and leave the hospital full of other sick children and their sometimes frantically worried parents, in peace!

Iam64 Tue 24-Apr-18 20:44:57

I don't expect any of us needed to read the facebook post in order to have insight into the 'parents fight'.
It's rare for the state to be asked to intervene, in the shape of a High Court Family Judge, when parents and the medical team caring for their child can't agree. The Children Act places the child at the heart of these rare and distressing disputes.

Deedaa Tue 24-Apr-18 20:51:10

The father has achieved a great deal, particularly when you consider how young he is, but I wonder how much thought he has given to the future. Suppose this little boy does survive and lives for years severely disabled? A helpless baby is one thing, a helpless middle aged man is something else, especially if you think about the lack of help for families in these situations.

The demonstrators don't appear to realise that in any case of serious illness hospitals do speak to other hospitals, both here and abroad, to discuss treatment options. They are not in the business of holding patients prisoner, they would far rather co operate with others on finding a cure. The sight of hordes of people trying to storm the hospital is just disgusting. Don't they realise that there are other families with seriously ill children who must be having an appalling time.

Day6 Tue 24-Apr-18 21:00:38

All this whiles his child is sick and with no experience

And because many pro-life groups support his keeping his desparately disabled/sick child alive. Why do you think the Pope got involved?

I can understand the father not wanting to give up on his child, but really - is he thinking of what is best for his son? The cause and protest should not become more important than his son's right to die peacefully if Doctors have agreed there is no more to be done for him.

paddyann Tue 24-Apr-18 21:40:54

He's doing what HE thinks should be done and he has to come to terms with the reality in his own time .Dont be too judgemental about him he's barely out of childhood and is doing his best for his family.I'd hate to be in his shoes.When my daughter was dying there was no way we would have questioned the doctors ..because we were too naive to think doctors could ever be wrong.Sometimes I wish I had stood up to them and asked more question instead of blindly accepting what they said.Maybe then I wouldn't have felt that it was my fault she died ...of course now 40 odd years later I understand it wasn't my fault.It took a long time to come to terms with it though .

M0nica Tue 24-Apr-18 21:47:28

This little boy's death is inevitable. Medical reports shows that three quarters of the white matter in his brain has been destroyed and has been replaced by spinal fluid and water. The pathways in his brain responsible for all six senses have been destroyed, including those responsible for being awake and responsive.

There is absolutely no chance that his brain can regenerate and he can recover any of what he has lost - and the degeneration continues. The doctors rightly say that further treatment is futile. Better by far to take away the artificial means of keeping him alive and let him gently die.

Iam64 Tue 24-Apr-18 22:18:10

The Judge won’t agree the child can go to Italy. He’s asked the parents and the medical team to talk to see if it’s possible for the little boy to go to a hospice or home

Beau Tue 24-Apr-18 23:02:27

My DGS was there for minor surgery yesterday and while he was under general anaesthetic, those people were online asking anyone already inside the hospital to set off the fire alarms to cause maximum disruption. (This was after they had blocked all the roads and the police had sealed the hospital doors temporarily). I was worried about what would happen to DGS in that situation and was also very conscious of the noise of the demonstrators which must be so distressing to the parents of other children admitted to Alder Hey. Poor Alfie needs some peace too, my heart breaks for him.