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Sepsis Stole Our Baby

Our daughter at 5 weeks old, who never left the hospital, contracted sepsis. A sepsis (which we were told is similar to Meningitis) swamped her tiny premature body.

Rewind 5 weeks.

Due to contracting HELLP syndrome in pregnancy, I was minutes from seizing so the the decision was made to have an emergency c-section at 26+6 weeks.
We had been told she had great odds of survival, 80% actually; even more so because she was a girl.
She was expected to be on a ventilator for at least 10 days.
Less than 24 hours later she no longer needed the ventilator, she switched to the Cpap machine. This, we were told she’d be on for a few weeks too. The next day she came off that too, switched to a Vaportherm machine, which gently gives oxygen, to ensure her lungs wouldn’t stick together.
She surprised everyone.

A Little Diva

She sailed through everything she was meant to.
Feisty little diva – knew exactly what she wanted; including pulling up to 8 feeding tubes out a day.
We even had a discharge date, a date to make plans as a family if five.
Five days before she died, she was out for a cuddle, we loved our cuddles, all her requirements would settle her, she’d be so relaxed. This particular day she had an apnoea whilst on me. She was whisked back into her incubator, feet were rubbed she came around.
We were told that babies often forget to breathe, and she was at that point due for another transfusion.
It was scary.
We visited again I mentioned she had slight odema in her arms, we were told this was normal, not to worry.

Cuddles

I was able to have a cuddle, only this time I was terrified of hurting her.
She was in need of some relaxation, time to recover from her transfusion. Premature babies need lots of rest, even after nappy changes and feeds.
3 days before she died we visited with a milk run, where we discovered she’d had a test – an eye test, we’d only heard about it through other parents on the ward, we didn’t know she’d be having one too.

They don’t like parents being present due to how invasive and distressing it is for the babies (although in hindsight, maybe a cuddle would help the distress), can often make babies unwell.

I only saw her in the incubator on that visit, she had really found it distressing she really needed rest. Her oxygen requirements were raised.
The following day she was still recovering, but she was able to have a feed. We were hoping for a better day. Her final full day, we visited, her O2 was still raised but she seemed to have perked right up. I was allowed a cuddle her brother saw her out of the incubator for the first time.
We left the hospital that day on a high, with plans for the next day for have a girlie day. My eldest daughter was going to get her first cuddle.

Everything Changed

Less than 24 hours later Melody was gone.
No girlie day, no warm cuddles.
She died.
Over night, the night in which we’d had a wonderful day with her, she was changing.
The O2 requirements increased, in turn she needed a ventilator to breathe for her.
Her heart was restarted 5 times.
Antibiotics sooner could have changed our outcome, something none of us will ever know.
With her CRP level at 110. The sepsis taking hold of her, there was nothing more that the doctors could do.
When we walked into the unit, with only a hint of what was to come (we thought she’d had either another apnoea or was going to be transferred), only to be told our five week old miniature Princess wasn’t going to survive.
We had to say goodbye.

Sepsis

It wasn’t something we were greatly aware of; that Sepsis and Meningitis could happen in a place where your child has never left.
We were surprised when we were told this. We knew that there was another baby poorly with suspected Meningitis on the ward, but we never knew just how common it is in the NICU.
Of course knowledge probably wouldn’t have helped her; we’re not doctors. But awareness that it can happen.
However you never get over the shock of having your seemingly healthy baby die.

NICU Parents

Never be afraid to mention changes. Although the nurses see them every day, as parents we’re the ones who learn every single inch of our babies, their bodies.

Ask questions. If you don’t understand then ask again, explain that you didn’t quite understand.
That baby is YOURS.
That part is hard, I found sometimes it felt like she wasn’t ours at times.

Make yourself aware. I never knew milk banks existed, or that I could get breast milk from other sources. I didn’t want her to have formula, it seemed harsh for her tiny tummy, but I couldn’t pump enough, quickly.

Learn about the procedures and tests, again ask. If you’re not happy get a second opinion. There are things we would have wanted and declined had we asked more.

I often wonder whether I did enough. Asked enough, spoke up for her.

Sepsis can happen in the hospital, in the NICU and can kill. It can destroy everything.
It stole our baby.

I Tried To Keep Her Safe

Decisions

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?

Sometimes, yes.

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?

August 2012

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.

Processing

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.

Changes

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.