We chose to not have a Post Mortem right from the beginning, we felt she had been poked and prodded enough, particularly her final few hours; we wanted her to be left.
Do we regret this decision?
It was initially thought that a condition called Necrotizing Enterocolitis – N.E.C, had taken her from us, that being premature could have been a probable cause, so these reasons swayed us against having a PM. It wasn’t until meetings and then a Child Death Review months later we questioned.
Did we make the right decision?
In August 2012, a group of health care professionals gathered together in a room, a room we weren’t allowed to go, all we knew was the date, which she would be discussed in great detail. Some of these health care professionals had never met her; they had records of words and figures, a timeline of events but had never met her. Talking about her whole life, in a clinical way, she was down as a number.
Only she’s not really a number, she barely makes any statistics. Statistics for me are important, it gives her some kind of inclusion, even if it is something we didn’t want her to be a part of.
Back to the meeting, I remember we spent the day clock watching, wondering how she did; almost like an exam or something she needed to pass, we had no idea on what we were expecting, answers to help with closure I guess, although five years down the line I don’t think closure is really ever that easy, nothing about this would ever bolt shut.
An email arrived, the words gently filtered through, how they discussed her life, how they discussed her death. It took approximately two hours.
Less time we got to process the fact that she was going to die; less than the time it took for the infection to spread which killed her.
The infection which we learned was Sepsis swamped her body, her CRP was of a level that was far too high for even an adult to have coped with (or at least that was what we were told).
She’d had a couple of blips leading up to her death, she’d had these previously but she always, always recovered.
It was this that gave the factor, that had antibiotics been administered sooner, the outcome could have been so much better. Everything could have been so different.
Tiny things, which we’ll never know if it would have saved her life.
Something that made her death preventable.
Keeping her safe
We did – I did everything I could to make her safe, I did all what the guidelines told me to, reported movement changes, reported changes in my own body. I rested when I was told; I remained in hospital when I was told.
I expressed milk, we visited, we spent time with her, we stayed away when we were asked, we did everything we were supposed to. We listened and got excited about the discharge date,
Yet somehow, five years from having my third child I am writing in memory of her.
Everything I did to make her safe just wasn’t enough. I’ve stopped beating myself up, and focusing the blame on me. But closure is harder to find. I’ll always search for the what ifs, I know it’ll never change anything, I am not hurting myself – maybe I am, but I’m not hurting anyone else.
Her death meant changes to the Neonatal Eye Exam which made her poorly.
Her death meant that there should be more staff on, especially a lead nurse on in the PM shift.
Her death has meant looking into timescales around Sepsis and when to treat, to empower staff to contact other members of staff in shorter timescales.
I just wish it hadn’t been her to have made these changes.
I just hope she has been able to save at least one family from the heartache we are living with.