Archie Battersbee - Thread 3

[BongoJim]

Follow on from previous full thread

www.mumsnet.com/talk/in_the_news/4596573-archie-battersebee-case-thread-2?page=1

I feel exactly the same @tiddytidtwo . My dad was 62 and had acute heart failure from an undiagnosed heart condition and had a cardiac arrest in hosp all very suddenly back in April. He went into hosp on the weds with breathing problems and on the Fri morning he arrested so I find the suddenness so hard to get my head around. It took 40 mins of cpr and 2 shocks to get him back.

I was prepped for total brain death but amazingly his CT scan was fine, as was his eeg which really surprised all the docs. It seemed like locked in syndrome. Seemingly his mri was fine too but in 2 weeks he just had spontaneous eye opening and just didn't respond to any command and didn't react to pain in the "right" way. He was classed as semi vegetative but it was so confusing for me as he looked like him just staring up at the ceiling and ignoring me.

Eventually a specialist neuro looked at mri and found some (fairly) mild brain damage but his prognosis was poor and the patient in the bed just didn't match what the scans said. The neuro said very unlikely any meaningful recovery and the cardiac docs said he was in acute heart failure so even if he did miraculously make a recovery his heart was so sick statistically he would only have an absolute max of 12 months to live.

I couldn't even imagine how utterly awful that would be for my dad to have survived the arrest to come around to being told he had less than a year to live and could expect death at any time. He would be so afraid.

My dad looked like my dad, he had some help with the ventilator and was given heart meds but he looked so well in himself compared to archie. In my heart of hearts I know turning his life support off was the kindest and only real possibility, quality of life is important. There is a fate worse than death. I trusted the doctors experience and education.

But I'm finding this case has made me question my own compliance to turn off his life support, should I have fought for more time for dad? Maybe 4 weeks instead of 2 and he could have come around and I could have told him how much I loved him and how thankful I was to him and I could have got my last goodbye knowing that he could hear me at least?

Then logic comes knocking and I know I did the right thing by him but it's catching me unawares. I'm still grieving and I know I should just avoid this case but I just can't look away, it's everywhere.

@TiddyTidTwo yes, that is my experience of working in ICU. The patient is the absolute priority but when it comes to EOL care, the family is very much in mind, too, because they will remember what happened forever. Some relatives want to be present and others would rather have some quality time and leave with that memory. Either way, nursing and medical staff do their very best to make it as peaceful as possible.

"Then logic comes knocking and I know I did the right thing by him but it's catching me unawares. I'm still grieving and I know I should just avoid this case but I just can't look away, it's everywhere."

That's how I feel. Exactly this.

Re: brain herniation, or ‘coming’. Recovery is not possible. It really isn’t.

You can, but it's very rare

www.karger.com/Article/Fulltext/488235

www.hindawi.com/journals/cricc/2015/895035/

More an interesting curiosity of how brains are amazing, than showing any hope of recovery here though. Archie's case is very different and it's clear he is beyond recovery.

The weird thing is my dad had these twitches coming from his shoulders (I was told these twitches are a sign of abnormality in the brain) that would make it him physically move his arm.

When his sedation wore off he would physically be trying to cough due to the tube giving discomfort. His eyes were bloodshot from being open so long sometimes.

I found these things so distressing to witness and just couldn't stand him doing these reflexes that made him seem so human and yet with no hope of recovery.

It seemed so wrong his poor body was doing these things when he had no chance. It seemed almost disrespectful to keep him like this. I wanted him to be completely sedated so his body would be resting and once he died I was relieved he could be still once more.

I find it hard to get my head around how hollie can bare to see archie decaying and withering away.

I'm so very sorry for every poster whose finding this case has made them question their choices.

It's exactly why so much of the rhetoric around these cases is so toxic.

"Fighting" for someone isn't always about prolonging life. It's about putting that persons best interests first, protecting their dignity and considering what their wishes would have been in such circumstances even when it conflicts with every emotion you have to to keep them with you.

In that respect I think the courageous decision is not to "fight" but to "accept" and work with the medical team to provide the best possible palliative care.

These are decisions no person ever wants to make on behalf of a loved one and if cases such as these teach us anything, it should be that as adults we should be having these conversations with loved ones whilst in good health (and preferably having a living will) so any such decision is out of their hands anyway because our wishes are clearly known.

Obviously that's no possible for a child, but as a family if there is a commonality on what the adults would want for themselves, it may help shape the choices to be made for a child.

I really hope Hollie and family have the support they need around them tonight.

Same @Hamsternautss
My dad was very lightly sedated and clutched my hand and twitched his mouth when I played messages from his grandchildren.

But without the machines he couldnt survive and they were struggling with his BP. He was on dialysis too but it wasn't working. But they kept going till we got there. They brushed his hair (not in the style he liked 😂 but we said nothing)

So we did get to talk to him, tell him everything and say goodbye and those in ICU gave us that. I hope he heard us. It was peaceful and dignified.

I really hope Archie's mum has that too, rather than fighting and doing what she's doing.

@BreadInCaptivity ❤️

But I'm finding this case has made me question my own compliance to turn off his life support, should I have fought for more time for dad?

If you ignore what Hollie is saying though, and focus on the state of Archie, it’s obvious that the doctors were right. He hasn’t made any form of recovery from his initial presentation. His body is very very unstable, he is unresponsive, hasn’t moved, has fixed, dilated pupils and is in a nappy. Would anyone want this for their own body?

The extra time hasn’t helped Hollie come to terms with things, she now seems to be projecting life upon Archie where there is none. Archie’s dignity is impacted and Hollie will be worse for it, when this all finally ends.

People who are brain stem dead look so very peaceful. They can look 'well'. They aren't in pain because they can't feel pain. They are just 'sleeping'. I can understand why it's so hard to accept that the person lying in the bed is not going to get better.

Sadly, Hollie has been led to believe that the very powerful drugs are 'normal' and don't indicate any problems.

I do hope she is well supported in the future. She will relive this time once all the pressure has lifted and it will be so hard. She has other children to parent so she won't be able to just collapse.

💐For those who have experienced a loved one in a similar situation.

We as siblings have discussed this before I actually wrote a letter on my wishes with friends 20 years ago.

There was a case study in school about a woman who had a severe brain injury, she appeared to be trying to pull her feeding tube out - there was a dispute between her family afaik? It was a long time ago.

Our teacher advised us to write out our wish and discuss them with loved ones.

I don’t want to survive incapacitated and fully reliant on other people.

I see the hardship it puts upon the family when a loved one is left half living, it is heartbreaking.

I hope my post is not offensive or insensitive to anyone.

Hollie will be worse for it, when this all finally ends.

We genuinely don't know that.

It may well be that she finds comfort in the knowledge she did everything she could to prolong his treatment.

Finding her son hanging from the bannisters will have been (and will remain) the worst moment of her existence. I'm sure she has questioned over and over again what she could have done differently. A million "if only" and "what if" thoughts.

If treatment is withdrawn tomorrow then that will be how she can process why he died, not because he tried to commit suicide or a prank gone wrong and Hollie did everything she could to prevent that, even if she couldn't prevent the incident in the first place.

You don't have to agree with her decisions to have some empathy for them.

Good grief.

Only on MN.

@TiddyTidTwo

That's given me such a lump in my throat reading what happened with your dad. I'm so sorry, its just the most heartbreaking place to be.

I really struggle with never knowing if my dad even knew I was there. He had covid a week or so before hosp admission so they wouldn't let me see him till a negative pcr came through, we were just what's apping. Then he arrested a few hours before his pcr came back negative.

On one hand a cardiac arrest is very peaceful as you just blackout so if he had died there and then I'd know it was peaceful and he had no clue his life was ending. But they got him back and that's where the never knowing really hurts as I'll never know what he could hear or know if he heard me.

I was so afraid to watch life support turn off and it did take 20 hours for him to go, but like your dad it was dignified and peaceful when he did.

The staff on ICU were all so amazing. I was on my own so it was hard but they were all incredibly kind.

I am haunted by ICU and the experience of it, but I have comfort in how well they all cared for my dad. I worry for Hollie after Archies body dies as she is going to be so bitter towards the staff and won't have any of the "at leasts" that we had.

I've had the "what do you want to happen if " conversations with my DC ( I know DH views) It is a tough thing to instigate .

I remember the excitement of getting my Provisional with a kidney donor card included ( this was 1984 ) and filling it in.(Sadly now I cannot donate blood or body)

The amount of human suffering Andrea Williams is directly responsible for causing is terrible. Lucky I don't believe in an afterlife so I have no belief she'll be punished for it. And I'm sure her intentions are good. What a way to use your life.

"I really struggle with never knowing if my dad even knew I was there."

I'll bet my house he did know you were there. It's a very emotional, confusing time and hold in your heart that you were holding his hand as he peacefully passed over ❤️

Big hugs and to everyone else who has gone through the same x

Yes I think she will take comfort from the knowledge that she did everything she felt she had to do. There have been so many court appearances though, so much uncertainty for so long, and to lose a child- no one could come out of that unscathed.

I think any situation propagated by denial makes a harder landing, in the end. It’s not just “doing everything she could”, it’s ignoring the reality of the situation.

That video she posted of his fixed, dilated pupils and filmy corneas “looking” at his teddy demonstrated how far she’s spiralled down the rabbit hole. There’ll be a lot more to process when this is over.

absolutely i feel the same ive told my dh if im not going to have a full life switch it all off-not him but you know

he feels the same

sorry forgot to tag @EmeraldShamrock1

I was so afraid to watch life support turn off and it did take 20 hours for him to go, but like your dad it was dignified and peaceful when he did.

It brings me comfort to hear it was dignified and peaceful.

We were unable to be with Mam April 2020 heavy covid restrictions - it was the longest 20 hours of my life willing her to go once help was removed.

She was absolutely terrified of dying, the thoughts of her being alone haunts me.

We use to laugh about her fear of death I always said I'll mind you when your time comes.

Hollie will unfortunately face a lot of hardship once he is physically gone.

Some posters have said they hope that they haven't offended anyone.

I can sincerely say that I haven't been offended.

I also think it's a positive thing if the thread has enabled posters to pour out their own personal feelings and experiences that they may have been bottling in for ages.

My heart goes out to all of you who have been in Hollie's situation either with a child or adult family member or friend. I can't begin to imagine how painful it must be.

Also with the thread being about Archie , I think its fine for posters to be free to discuss how he is currently , but also what's gone on before and what may happen after . Its not exclusively restricted to 'in the moment' i.e. his life support being removed .

On this thread posters are expressing their sympathy for his Mum but not necessarily agreeing with the way she goes about things. Who are we to judge her. Apart from slanging off the hospital staff. This is out of order.

Could someone post a link to her interview please as I can’t find it x