“These kids are fierce, but so are we” - Jessica’s story for HIE Awareness Day

Jessica 1

Today is HIE Awareness Day. Jessica shares her experience of having a little girl, Hettie, who was born at full-term and suffered from Hypoxic-ischaemic Encephalopathy (HIE).

Trigger warning: this story contains references to suicidal thoughts

They always say writing the first sentence is the most difficult. After going through such a significant life event, I feel almost uneasy trying to find a place to start with this story, but I am choosing to begin with hope. Even though we were in the height of Covid-19 I got to enjoy a magical, full term pregnancy prior to entering NICU.

I know this statement alone will hurt many in the NICU community who did not experience this due to pre-term deliveries, and I am deeply sorry for that. Please continue to read as I hope there are many relatable discussions.

Even though we reached term, I still don’t consider myself ‘lucky’. I thought we were well and truly ‘out of the woods’ and safe, especially once I arrived at 37 weeks gestation.

It was around 2am when I had a placenta abruption at home. I thought my waters were breaking but then realised it was bright red blood and lots of it. I was ambulanced to hospital and had a category one (life-threatening) c-section, under general anaesthetic. Our little girl, Hettie, required almost 30 minutes of resus and an emergency transfusion in theatre.

A heartbeat eventually came back but she wasn’t breathing herself so was intubated. She went to NICU and started therapeutic hypothermia treatment (‘cooling’). The next day we were told she had had continuous seizures overnight, was in multiorgan failure and was very unlikely to survive.

It was confirmed that Hettie had severe (grade 3) HIE and her organs were continuing to fail. After 72 hours she was ‘warmed up’ and her brain activity was ‘worryingly quiet’ - she had no primitive reflexes. It was believed she was brain dead, as she was still on full life support and showing no signs of life after seven days.

Hettie survived.

She left NICU with severe brain damage and kidney failure, but we were fantastically well supported and plans were in place.

Initially, for maybe two or three months, we were just so delighted she had survived that life felt okay. A nondescript word to use but I don’t think I had the capacity to be anything else at that point. Just okay.

Month three rolled in and after a letter saying I had been rejected by the perinatal mental health team, my world fell apart. I felt so abandoned. That letter really triggered a wave of emotions, and I could hardly function.

I had all-consuming flashbacks and felt very vacant in my day. I was fortunate to have family with me every day to help me, baby Hettie and our two-year-old, Lily.

I felt such grief and couldn’t make sense of it, as Hettie was alive. To me, it felt like my brain didn’t think she had survived and even holding her and feeling so much love and gratitude it didn’t add up or make sense.

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I spiralled over a few months, struggling to figure out what I was feeling and became reckless with my actions. I didn’t care if I walked into something, I would imagine falling down the stairs, I walked into roads without looking because it didn’t matter if a car hit me (lucky we live in a village, so the risk was low). I thought about jumping off things, imagined drowning in rivers, I was worried I’d pick up a kitchen knife.

I often would hit my head on door frames walking through as I needed to feel some pain, physically, to try and make sense of the all-consuming emotional pain I was experiencing. I never put anyone else at risk, but I had no love for my life. Yet deep down, I couldn’t bear the thought of my daughters not having their Mummy, and this fundamentally kept me safe.

I threw myself into research (I am a physio by profession) and spent hours figuring out how I could give Hettie the best outcome. I knew milestones weren’t going to be met in ‘normal’ timeframes, so I worked on play ideas and games based on the evidence in literature, and my neuroanatomy understanding that would challenge her for her current stage.

I focussed on her and did about four hours of structured, and well-thought-out, play each day. I could get my two-year-old involved too, and it kept me afloat. I had some private CBT which had such a positive effect that I started to get some light back in my days.

I started to understand why I felt this way and that joy and grief can coexist. Still, my focus was all around Hettie’s goals and ‘what next’. I didn’t take a day off or let myself lose momentum, as I had to keep going.

I knew I needed to feel confident that, whatever her outcome, I had done all I possibly could within my expertise for her.

This was positive in that I knew I was doing her justice, but a negative is that I felt immense pressure. I knew it felt heavy and there were blips in her rehab where I thought I was getting it wrong and began doubting and second-guessing myself.

As Hettie got older, between the age of one and two I continued to slowly improve mentally, or at least I thought I was. Hettie was making good progress and I was delighted to see the relationship between my daughters start to flourish.

I knew around age two Hettie would have her Bayley development assessment and neonatologist review and I believed that by the time that rolled around, life would feel a little more normal.

Hettie’s Bayley assessment revealed she had a mild gross motor delay but would catch up, and that she was cognitively normal for her age. It was something we thought entirely impossible two years prior, so I was ecstatic for Hettie!

However, it turns out that feeling didn’t translate to me as I had expected it to. I didn’t get a feeling of relief; I got a feeling of immense sadness and loss.

On reflection, I think it happened because I finally allowed myself to acknowledge what we had all been through, the reality of our life for the past two years, the sacrifices, the struggles, and the endless appointments.

I admit that I had done very little to support my own mental well-being during this period. I’m not sure mums are great at this anyway, but in this complex situation I really did not have the capacity to think ‘I deserve an afternoon to myself’.

I wasn’t sure what to do with myself, I felt unhappier than I ever had since that first week in NICU. I was devastated that this was the card we were dealt and that I had lost so much of me.

I got flashbacks again, and would find myself walking around NICU in my mind whilst bathing the girls or looking over her crib next to her ventilator. It was happening almost every few minutes during the day and I was continuously tearful.

About two months after this began, and I had tried returning to exercise and taking an hour for a bath or a walk, I knew deep down it wasn’t sustainable. I was always anti-medication and felt like I needed my brain to be ‘natural’ to process the trauma and figure it out. Around this point I knew I had no other option so began a low dose of sertraline. Fast forward three months and I am doing so much better.

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I still think about those traumatic moments, but I don’t feel it so physically. I acknowledge the sad memories, but I am not living in them. Experiencing that grief all day, every day in front of my thriving child was torture because unlike the early days where it made more sense and was expected, it didn’t at this stage.

The sertraline is allowing me to process these events and memories better. The awful conversations around death, memory-making in NICU with footprints and photos, taking her car seat out of the car, shutting the door to her bedroom thinking we’d have to eventually go in without our baby. It’s hard and is taking its toll still, but I am going in the right direction.

No one navigates trauma the same way, and unfortunately it’s not linear and it certainly doesn’t follow a guidebook. It creeps up when you least expect it and feels immensely powerful.

All I will say is you are more powerful. Find what works for you but be patient with yourself. Please reach out for help as it’s much harder to work this out alone.

If day by day is too much, then do hour by hour. Write down three positives at the end of the day (however little they may seem: I was present at bath time, I read a chapter of my book, I enjoyed a cup of tea). Know you are not alone, even when you feel you are. There is a huge community out there rooting for you and supporting you.

These kids are fierce, but so are we. We just hold it differently because we are holding so much more.

Peeps HIE offer information and support to families affected by HIE