Alfie Evans 7

[StayingAtTamaras]

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I’m a mother of 45 years. I develop a severe brain disorder whereby I deteriorate quickly. My brain is now 70% water and my reflexes, breathing are controlled only by my brain stem (like how you stand up, breathe, etc. All unconscious mechanics). I am in a semi-vegetative state at best and put on life support. I can not communicate, breathe on my own, express emotion. I can’t tell you if I’m in pain or not.

My adult children cannot accept this and believe I can get better, despite being told my medical experts this can never happen. After almost 18 months and further brain deterioration the medics decide it’s futile to continue. My children then decide to fight the medical profession and the courts. Others jump on the bandwagon and fuel their pain with their beliefs which may not be mine, and offer them nothing but sound bytes and false hope. This goes on for weeks whilst I lay there like a husk.

As a human being and person who does have their own mind, I’d like to thank my children in advance for caring for me so much but please don’t keep me like that, please don’t drag me across the world to alleviate your grief. I don’t want this. And don’t believe I’m being “murdered”. I’m being set free and I’d like my children set free from this nightmare too.

I can say this as an adult. A child cannot.

I agree with that sentiment numpty but bet 100% that AA wouldn't give a hoot about an adult in a similar situation or even a teenager. The baby is very easy to latch on to - god knows but AE was beautiful and you would have to be pretty hardened not to be moved by his plight.

Agree frag. My priority is Alfie then his family. No one else. I feel his parents were used and I feel so sad for them.

I'm battling the trolls on FB now. Just replied to this pile of bile

"I am not a doctor so I may be very wrong but food to stomach, surely that’s not the only way to administer nutrition to someone in such condition? Anyhow, it is not the medical aspects I was on about but rather moral. If i was a nurse or a doctor, I would cut my hand off before switching off life support to a little child against his parent’s will. Nothing could make me do it. I would quit my job. How do they sleep at night knowing the grief they left behind? Who are they to decide when someone dies? Again, that is a violation of the law of God. If this kid was a royal, would the same have happened? I assure you not. I understand what you are saying, but some things just don’t make sense. My main question is why would UK government not allow for a child to be taken to Italy? What is it to UK? It is something they failed to diagnose anyway. What if in Italy they diagnosed him?! What if another child God forbid comes with the same thing, you wont know what it is again and you will push for that child’s elimination? I am just afraid that there is something greater behind this that neither me nor you nor anyone else is aware off. Why else be so desperate to push for his death."

I told her that's why she's not a nurse, our hospitals would be full of poor souls stuck between life and death being kept artificially alive. I'm also coming up against religious cuckoos and gun fanatics but I will not give in or be shouted down. Our brilliant NHS staff deserve better than this crap. They must be devastated.

Oh numpty that is so appalling! I just don't know how you get through to people with views like that, the poor medical profession must feel so under fire. Well done for trying to counteract the bonkers opinions on there.

There really is no end to people's ignorance and stupidity. I think you're in a losing battle numptynuts if you can't even get them to understand the basic fundamentals but good on you for trying.

Got to try. Might be fruitless but these people do not rule the world and the silent majority count as well. (Not that I'm being silent any longer)

I wonder how those parents would feel if their child needed an hdu bed and there wasn't one available, because we were keeping a child alive in a vegetative state with no chance of recovery? It's an awful thing to consider, but resources in the NHS aren't unlimited, and how many people would be able to afford that level of care privately? People are already denied treatments for things that could be helped because of costs, paying for unlimited care when doing so could actually be causing or prolonging suffering with no hope of recovery is unthinkable.

Also reversing the situation so that parents wishes are always followed, what happens when a parent denies essential life saving treatment, do the parents rights still count as more important than the childs needs? People really need to consider what is being proposed here with new legislation on parental rights.

If any good can come from this whole sad situation, then I hope it is that we consider the rights of the child to privacy, dignity and respect and to place quality of life above quantity.

Hopefully there will be sensible debate and discussion in the future, I have to say that in real life I haven't come across a single person who believes the hospital should have kept Alfie on life support.

Also reversing the situation so that parents wishes are always followed, what happens when a parent denies essential life saving treatment, do the parents rights still count as more important than the childs needs? People really need to consider what is being proposed here with new legislation on parental rights.

Exactly and I've just put that across to them. Wonder what their response will be to that.

Well done numpty, is this on FB or Twitter? I've been fighting the trolls too about the diagnosis / murdering staff, it's unbelievable the vitriol against my colleagues, ( not PICU myself but have been on receiving end of grief fuelled accusations) & the complete ignorance of how the NHS & EOL care works.

The article about TE trying to give mouth to mouth has just stirred things again..though does seem like take a while to die down.
Do find the seeing his face in cloud thing a bit odd. If was from his parents not so as brings them comfort but from a group of strangers who never met him.. Duno.

Hopefully the posts of murders and whatever else rubbish will face.. Its sad but what was done was a kindness in the end.

Very good points fenneltea I would not be surprised to see some effort being made to attempt to change the laws to give parents rights over their child. I believe it would be a retrograde step and really hope it would not be successful.

I can't imagine what would have happened had Alfie's parents been allowed to transport him to Italy or Poland or god know's where. Who knows what he might have suffered as a result of decisions they would have taken when quite honestly not in their right minds, due to extreme emotion and distress. How could that conceivably be seen to be the right thing for Alfie?

I hope they are being given help to come to terms with what has happened. Actually that's probably an unrealistic expectation but I hope that in time that they can find some peace.

I also hope we never see anything like this ever again.

My SIL works at AH and has been terrified going to work. The same day AE died so did one of her patients..... Someone she fed, played with, medicated and cared for.....she is devastated...like all of the clinicians will be in AE ward!
This whole scenario has been awful and the way AH have been slagged off regarding care has been terrible. People with no knowledge or medical know how.... unluckily I have good knowledge due to bring the mum of a severly disabled boy.
I know what midazolam and Fentanyl are and why they are used...I understand feeding tubes and howthey erode .... Unfortunately most of the AA have no knowledge and Google is thier best friend !!!

I suggest that everyone who wants to make a donation dies to SWAN syndromes without a name .... Alfie was a SWAN..... And there are many millions of children out there waiting for diagnosis!!!
I've uploaded a pic of my son's mic-key button ...it's too big and only been in for 2 months..... I care for this...not a nurse or a doctor so he gets the best mummy care available...and it still looks manky when removed...it's the nature of the beast ...it's not poor care it's a feeding tube !!!!

Facebook. I've been accused of worshipping and kneeling down to sovereignty...all sorts, but having none of it. I have actually shut two or three down as I can shout louder. Or maybe they don't have an answer to common sense!!

The religion thing is really irking me though. How can you spout stuff about God's will then want human mechanical intervention. I accused them of wanting the best if both worlds but twisting the truth to suit their agenda.

I asked one if Jesus carried around a defribrillator. I'm waiting for her response....

The religion thing does seem to be to suit the agenda of 'life at any costs', in my view a compassionate God would want to alleviate suffering, not prolong it.

If a life is artificially prolonged then surely that is against Gods wishes?

A read a book once that had a saying that it was better sometimes whether religious or not to hand your problems that you can't fix to a higher being, to 'let go and let god' he described it as, and psychologically I think it's quite a good technique, but letting go and letting god could apply equally in this situation, in fact removing life support would be doing just that. If they believe there is a heaven then why would they want to keep a child here suffering?

IceBearRocks thinking of your SIL and all involved at AH, so so sad and of course very many children up and down the country receiving EOL - so hard for everyone

I don't know why my post was deleted when many posts after it are stating exactky the same things. Anyway... here's a helpful link

petition.parliament.uk/petitions/215782

Thanks FluffyPineapple signed.

Well that's interesting FlyingBird I wasn't aware of that. I know that one of the relatives started a JustGiving page which apparently has reached £130k out of the £150k target. I thought maybe it was for legal fees but in a Daily Mail article it's suggested it be used for the funeral. I'm not sure what sort of funeral would cost £130k but it would be nice if there was some left over which could be donated to help other sick children at AH.

I have to say, that's A LOT of legal aid. Particularly when LA is a scant resource these days and so many claims aren't eligible for it - e.g. child custody cases unless you can prove domestic abuse

Would everyone be eligible for legal aid in this circumstance? Or is it income related? So the evans would get full funding, but would say a nurse and a middle manager on 70k a year? Because that sort of legal cost you’d need to be super rich to afford.