"It could be the difference between being a rocket scientist or a brain surgeon" - Steph's story

Steph's daughter, Mia, was born full term and diagnosed with grade 2 HIE (Hypoxic Ischemic Encephalopathy). Here, Steph describes the birth and how her and her daughter recovered from the experience.

On October 10th 2019, I woke up after a few hours sleep and realised I was in active labour. I called the hospital and they told me to come in. This was it, I was finally having my baby - and only three days overdue. The contractions were painful but bearable. I was excited!

As we got to the hospital the contractions were getting more painful, but I knew I was in safe hands. Very quickly the pain became more and more unbearable. This was my first pregnancy so I was not too sure what to expect. I very quickly decided I needed an epidural.

I tried to have gas and air, but I was really starting to feel frightened and was panicking so much that it wasn’t able to take effect. There were midwives monitoring my baby, but they were struggling to get a heartbeat. They escalated through their ranks attempting to locate one and then I felt a gush.

I remember seeing a look pass between two midwives and then suddenly there were about 25 people in the room. My placenta had ruptured. What I thought was my waters breaking was actually blood. I didn’t know any of this at the time. I didn’t know anything other than the unbearable pain I was experiencing.

“Steph, we have to get your baby out NOW!” This is something I hear a lot when I replay the memories of my labour. The amazing consultant who got my baby out had appeared without my knowledge and something was wrong. Her voice broke through the absolute chaos and brought me back to the room instantly. I was in labour and I had to use every inch of my being to save my daughter. I pushed past all the pain, and with her help, Mia was born.

The room was silent, except for the army of people. No crying. What was happening? I had only been in the delivery room for half an hour. This must all be some awful nightmare? Then I started to feel dizzy, as I lost a third of my blood. I remember looking at my partner who had been watching everything happening, completely powerless.

I was asking if Mia was okay but nobody had an answer. There were two midwives in the room crying. After 10 long minutes of CPR, my baby had a heartbeat. They didn’t know how long she had gone without oxygen and she was very unwell. They whisked her away for cooling therapy which I now know is an astounding treatment to help the brain of a baby born with HIE (Hypoxic Ischemic Encephalopathy). This was her diagnosis, grade 2.

We hadn’t named her. She couldn’t fight without a name. There was no question anymore about which name to decide on so we named her Mia. It means “longed for child” and as we had tried to conceive naturally, but had turned to IVF in the end. There was no name more suited. We weren’t losing her now.

I was too unwell to meet her for many hours, but I got to hold her hand through the incubator before they moved her to the John Radcliffe hospital. I had to stay in the Royal Berkshire hospital for another 12 hours, but as soon as they moved me, we were able to be together. I wasn’t able to hold her for five long, indescribable days, but when I did it was the best day of my life. I don’t think anything will ever top it.

Mia was in NICU with mostly premature babies for 11 days. They were so tiny and she looked so big compared to them. There was literature everywhere about premature birth but I could find hardly anything about HIE. I did find one leaflet mentioning that for a baby with HIE, it could be the difference between being a rocket scientist or a brain surgeon. I found this so comforting as you go to some very dark places with some of the information you are told by the consultants about the future your baby might experience.

Mia had seizures while she was being acclimatised back to her normal body temperature, some while I was holding her. I cannot explain that feeling on top of the grief and trauma that I was already experiencing. She was very unwell for those first few days and was intubated a number of times. We thought we were going to lose her more than once.

The uncertainty of a brain injury is an anxiety I cannot explain and the whole experience has left me with PTSD. I spent so much time on the internet trying to figure out what might happen but the only thing that helps with hindsight, is time. There are stories of hope out there but they are few and far between.

We are extremely lucky that Mia is doing amazingly well. Her brain scan at 9 days old showed no signs of brain injury. She is now 15 months old and has been discharged from all consultant care with the consultant himself telling us how amazed he is with her progress. HIE is an injury that can cause issues in the future, so we aren’t ‘out of the woods’, but she is our little miracle. She has fought from before she was even born and she might even be that rocket scientist we read about.