“I know you will hurt, but you will dig deep, you will find the strength and you will find your path” - Jessica’s story

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Jessica shares her experience about when her daughter Hettie was diagnosed with grade three HIE shortly after birth. Jessica was warned that she was unlikely to survive, however, she made a miraculous and gradual recovery. Hettie is now 16 months old, and although she has a developmental delay, she is thriving.

I remember getting to 37 weeks pregnant – I was feeling positive and excited at the imminent arrival of our second baby. After a smooth delivery of our eldest Lily (then aged 2) I hadn’t really thought much outside the ‘normal’ and was imagining our life as a family of four.

Three days later, I woke up in the night to what I thought was my waters breaking. I felt excited, but when I went to the bathroom and it was then I noticed it was bright red blood. An ambulance was called and I was taken to our local hospital in Plymouth.

On arrival, they struggled to find a heartbeat. We just expected to hear that heart-warming thump of our babies’ heartbeat, but it never came. There are many very clear memories that I don’t think will fade, and this was one of them - the instant fear that I thought we has lost our baby.

The room went calm, then there was some frantic discussion and the midwife grabbed the US machine and found our babies’ heartbeat. It was very slow, so slow it was masked by mine. I remember feeling relief that our baby was alive and I just thought that all would now be well.

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Our baby girl Hettie was born minutes later, with me under general anaesthetic and my partner, Jake, waiting in a room nearby. She required multiple resuscitation efforts and an emergency blood transfusion in theatre. Her APGAR score was one at ten minutes old. At just over around 30 minutes old the call was made to begin ‘cooling’ her.

Luckily Plymouth hospital is our regional level three-unit, so Hettie began therapeutic hypothermia treatment immediately. She was cooled to 33 degrees Celsius for 72 hours.

We went to visit her that morning, I remember holding my PCA on my lap in the wheelchair, determined to get to her. I was in so much pain, explained by the fact I’d not only had a c-section, but an incredibly fast c-section (two minutes from door to delivery). I was so excited to see her, seeing past all the wires and tubes. I believed the worst was over and I just saw our daughter lying there resting and recovering.

Later that day we were given the devastating news that Hettie was unlikely to survive. She was having seizures, was in multi-organ failure, and her brain activity was ‘worryingly quiet’. Another conversation I will never forget and I can remember the faces of everyone in the room, the conversation almost word for word and our reaction. Our world came crumbling down and the grief was so physical I could barely function at that moment.

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We spent the next 24 hours making memories by taking photos, having her baptized, getting our family in the say ‘hello’, and ‘goodbye’, and getting prints of her hands and feet. At her bedside, I would stare at her and sing her songs, read her stories and tell her about her family.

Even just writing this part down brings back such intense emotions. Her MRI confirmed a grade three HIE and her organs continued to deteriorate. Her CFAM showed little brain activity and we spent almost every hour of the day with her, only popping out to put out eldest to bed. I made the decision to hand express milk for comfort and used the colostrum for Hettie’s mouthcare.

On day three she was rewarmed, but there were still no signs of life. We knew it did not look good, but we also held onto this tiny bit of hope that something miraculous could happen.

On day eight we had the conversation about swapping from active treatment to comfort care. I was terrified of what this might look like - terrified of seeing her struggle, holding her for her last moments, devastated to be losing my precious little girl. We were given some time to think about where we would like her to be, either staying on the NICU, moving to a hospice or coming home. We chose to stay on the unit as it felt comfortable, safe, supportive and loving. Hettie was well looked after.

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About four hours after that conversation Hettie triggered the ventilator for the first time, and everything changed. Slowly, but surely, she triggered more breaths over 24 hours. After 48 hours she was successfully extubated and she began to gain strength and even managed to breastfeed.

When we were discharged we still had a lot of unknowns, we expected her to be severely disabled, and her kidneys remained in failure. After six months her kidneys stabilized and, as of now, that remains the case. The first year of her life was hard to navigate for me. I had some dark days, full of grief and an overwhelming state of sadness. With a lot of support and time, I’ve made it through the worst. My days are bright and full of hope.

Hettie is now 16 months old, and although she has a developmental delay, she is thriving. We still continue our breastfeeding journey. She is a beautiful, uplifting, magnificent addition to our family and we are so lucky to have her.

We are fortunate to have had the support and care we have had. Hettie has a phenomenal team behind her, both past and present. The care has been faultless and compassionate and I cannot praise them enough.

To anyone going through this now, I am so sorry. I know you will suffer, you will hurt, but you will dig deep, you will find the strength and you will find your path. I promise.