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Original poster

Alfie Evans 6

999 replies

CamomileTeaShotofVodka · 26/04/2018 01:49

Following on from the last thread. If there's one already please do delete this one.

Remember not to speculate or make negative comments about the family or discussions will be stopped.

Thoughts are with Alfie tonight Star

Such an important and sensitive topic.

OP posts:
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8
Bluelady · 26/04/2018 15:13

Uber, surely the discussion is harmless? This thread has nothing but compassion for the Evans family and has provided helpful information about the situation for people who don't understand it. Many parents have generously shared their experiences of similar situations. I really don't understand your problem.

MissEliza · 26/04/2018 15:15

Shatners how on earth can we have a healthy debate if we can't even state facts?
The family could arguably say the campaign against the hospital has nothing to do with them but they can't say it doesn't exist. That's dishonest.

derxa · 26/04/2018 15:16

This thread has nothing but compassion for the Evans family You're joking here, I take it.

Duckland · 26/04/2018 15:16

@DiamondsBestFriend

I followed the blog of a woman who had a very poorly baby. She suffered a traumatic brain injury at birth and was expected to live 18-24 months. Shortly after first birthday, her mum was told she was too poorly from repeated chest infections and would likely die in the next few hours and so the mum agreed to end of life care.

However, she didn't die and went on to live a few months receiving just palliative care, which included oxygen, feeds and fluids.

It's not the same because this baby was intubated but she was similar in that she was not going to recover and her brain was too damaged to support life and would give up at some point.

My understanding is, and I could be wrong, that it was not the "wrong" time to bring Alfie off ventilation because he is well enough to remain in treatment, rather that his degenerative disease has caused so much damage that he will be unable to live without intubation, whether that's hours or days and so he should be taken off it and given palliative care only.

The plan was always to transition Alfie to palliative care and stop actively keeping him alive. It was not in that plan that he should die immediately, just whenever he is ready.

I hope this makes sense.

Duckland · 26/04/2018 15:17

*wasn't intubated, that should say

HughLauriesStubble · 26/04/2018 15:18

This reply has been deleted

Message withdrawn at poster's request.

Pittapatter · 26/04/2018 15:18

Derxa
That's what I thought too

Sweetpea55 · 26/04/2018 15:20

Am I correct in thinking that this poor little boy has no brain activity at all?

Bluelady · 26/04/2018 15:20

No not joking, derxa. Only two of you appear to think the rest of us are lacking in compassion and empathy.

TheDrinksAreOnMe · 26/04/2018 15:21

Shatners, eliza, I completely agree with you

MynameisJune · 26/04/2018 15:22

Another one who wants to shut down discussion they deem inappropriate 🙄

In light of the MEP’a new campaign there could be huge legal remifications.

NewDOOFUSfor18 · 26/04/2018 15:25

bluelady there'll be a 3rd one along soon. I have learned a lot through these threads, there's been some revelations along the way, and some have shared heart breaking personal experiences, it's a shame that MNHQ are being so inconsistently heavy handed with the deletions.

DiamondsBestFriend · 26/04/2018 15:26

the only reason Alfie IS still here is because his parents have been resuscitating him, isn't it? assuming that’s even true though? And if it is, the fact that it has been possible for the parents to resuscitate him without actual intervention from the medical teams seems to imply that at the very least his breathing is more in tact than it was thought to have been, given he was previously on a vent?

Ubercornsdiscoball · 26/04/2018 15:27

I haven’t said everyone is female. I said it reads like women at a guillotine.

I’m not trying to ‘shut down’ discussion as I am fully aware and supportive of free speech. Everyone is entitled to an opinion. No issue. I am just amazed this is the 6th thread on this poor child.

Nothing but compassion for the family??

??

I just speak as a children’s nurse who has dealt with similar cases. I felt like shit at the time and your think all this ‘discussion’ (speculation in many cases) is helping people working with him? I literally can’t imagine it.

No i’m Not trying to shut down discussion but i’m Not entirely sure minute-by-minute updates are the way forward here.

MissEliza · 26/04/2018 15:31

Last week I watched the documentaries about Stephen Lawrence. One of the best things the Lawrences did was to push back on extremists who tried to piggy back on their campaign. One moment that stood out was when there was almost rioting at the inquiry and Doreen (I think)) stood up and said she didn't want any of it. If the Evans family had done similar it wound have allowed decisions and discussions to take place in a calmer atmosphere. Right now the relationship between family and hospital is so poor it's hampering the possibility of moving Alfie somewhere else.

Yamayo · 26/04/2018 15:32

Wasn't it mentioned in court that the only activity they could see on EEGs was epileptic activity? (To answer Sweetpea's question)

BuntyII · 26/04/2018 15:33

@Ubercornsdiscoball there are lots of nurses on this discussion thread, as well as parents who have had to go through the process of EOL care. Most of the discussion has been illuminating and sensitive. Everyone following this discussion is doing so because they care about the outcome for this little boy, they care about his wellbeing, just as his parents appealed for people to care.

LunaTrap · 26/04/2018 15:34

I think if a politician is attempting to change the law so that parental rights supercede a child's best interests off the back of this case that is certainly worthy of discussion. This has gone far beyond a private medical matter- it is being played out very publicly, the NHS and it's staff are being called murderers and people are calling for children to basically become the property of their parents.

KeneftYakimoski · 26/04/2018 15:35

I think if a politician is attempting to change the law

No-one gives a shit what a ex-UKIP MEP thinks about UK law.

MynameisJune · 26/04/2018 15:35

@uber just scroll past, there is no need to comment if you don’t like what is being discussed.

No one here has claimed these threads help anyone treating Alfie. They help a lot of us who can’t have this opinion anywhere else in social media without being called murderers. Yesterday I was told by friends of friends that i can’t love my daughter very much if I would let her die when she was perfectly fine.

MynameisJune · 26/04/2018 15:39

@keneft I hope you’re right, Alfie’s Army has 420k followers. Admittedly from around the world but a lot of British people. Charlie’s Army had similar number iirc that’s a lot of people to sign petitions.

DoryNow · 26/04/2018 15:40

Also Uber the legal explanations & discussions have been very illuminating & will help HCP's like myself & others providing end of life care, wether to children or adults to be better practioners. Having been on the end of a grief stricken family's false accusations myself ( thankfully prior to social media)I feel for the staff involved as well as Alfies parents.

MNHQ
YetAnotherHelenMumsnet · 26/04/2018 15:41

@MissEliza

Omg I can't believe my comment about the Evans family got deleted! So apparently we aren't allowed to point out that the family are saying things that are plainly untrue. Why should they get protection that others haven't?! Absolutely ridiculous.

Hi MissEliza,
We have checked, and there can be no doubt that what you posted was an attack. Hopefully there won't be any further deletions, however in the event that you have any further queries could you please report them rather than derail the thread? It seems just to have got on track, and it would be good to keep it that way.

MycatsaPirate · 26/04/2018 15:42

I've not read the whole thread and I think I've missed out three whole threads on this subject but doubtless it's going over the same points repeatedly.

My heart goes out to everyone who has posted on this thread about the loss of their own child. No parent should have to go through this, it's just the most heart wrenching thing imaginable. Three of my friends have lost babies/children and I have seen the utter devastation it causes to them.

I am finding the whole AE case hard, it's so difficult to not become invested in it, either as part of the 'Army' or as part of the other side who think it's time to let him go with dignity rather than fighting on.

But I think everyone agrees that this is just so sad and poor little Alfie deserves more than to die surrounded by anger. He should be surrounded by peace, tranquillity and love in his final days, not by the hostility currently.

I wish that the parents had accepted the hospitals decision originally, that they had removed ventilation, that they had had the chance to go to a hospice and have these few days with him tube free, to cuddle him, talk to him and walk about with him. To just be with him as a normal baby and cherish the time with him peacefully. I suspect, looking back in the future, his parents may well wish the same.

But hindsight is a wonderful thing and grief does terrible things to the mind.

TerfinUSA · 26/04/2018 15:43

"The family could arguably say the campaign against the hospital has nothing to do with them but they can't say it doesn't exist. That's dishonest"

Um, I'm struggling to see how calling the family dishonest is demonstrating 'nothing but compassion for the Evans family'.

Many of the posters on this thread seem to be devoted to criticising the family on the basis that they are factually wrong. Which is fine, but it's in no way compassionate whatsoever. Not even in the slightest.

The parents have a dying child who they want to save, whether or not that's medically possible, their beliefs are entirely reasonable in view of their status as parents of this child, and those questioning their motives are very obviously lacking in compassion.