I remember the day Nova was born as though it was yesterday.
My fiancé had left for work, and I was home alone. Nova had been moving less and less the past few days, and on the day she was born she hadn’t moved at all. Whilst he was at work I decided enough was enough and rang up triage at the hospital and explained about the reduced movements. They wanted me to come in there and then. I got my fiancé to leave work and we went straight in.
When we got there it felt like we were waiting forever in the waiting room. Luckily, they managed to find Nova’s heartbeat, and it was nice and steady. Unluckily, I had protein in my urine and was diagnosed with severe pre-eclampsia. Apparently my blood pressure was through the roof and the doctors were shocked I was still walking at the time! I was admitted straight to hospital and over heard the hospital staff talking about delivery.
All I could think about was how could my baby live, she wasn’t ready to leave my body.
She wasn’t due until November, and it was only August!
The amount of guilt you can feel about your own body is unreal. I felt (and still feel) as though I had failed her. A guilt I know many women in my situation feel.
Nova was delivered within the hour by emergency c section. The placenta was not providing her with enough nutrients and oxygen and she was better off out than in.
She was a tiny 1lb 12, which was very small for her gestation and by all accounts she was partly blue due to the low amount of oxygen she was receiving.
I got a quick glimpse of her bundled up before she was whisked off to the neonatal intensive care unit (NICU) and I was taken to the high depndancy unit (HDU).
To this day those pictures still make me cry. She looked so tiny and helpless. She didn’t belong in an incubator, she was meant to be inside me. I was allowed into the NICU the following day, and I managed to hold her hand. She was so small it only just wrapped around the tip of my little finger. She was on a ventilator and was, for the time being, stable.
The following day however Nova had a sudden turn for the worse. Her oxygen sats were dropping and the ventilator wasn’t working anymore. My fiancé and I were told that there was only one treatment option left, and if it didn’t work she would die.
They we’re allowing the treatment to take a couple of hours to work, if it didn’t work it never would and we were told to prepare to say our goodbyes.
I was a nervous wreck waiting in my hospital bed for the news that the treatment was working. Nothing can ever prepare you to give birth so early. I don’t know how I would feel if I had had to say goodbye to her after only a couple of days and luckily the treatment did work. Nova had a relatively settled NICU stay thereafter.
In time, I was allowed home. Despite recovering from major surgery, I still managed to walk to and from the train station to make the journey to hospital everyday. I probably did overdo it, but NOTHING would stop me from being with my daughter.
After 69 days in the NICU, Nova was allowed home. She came home on oxygen, due to being diagnosed with Chronic Lung disease. She was only on it for a few months before coming off and we will be forever grateful to the staff at Birmingham Women’s Hospital, who spent countless hours looking after Nova when we couldn’t be there. Without the dedication and support of their staff we wouldn’t have a daughter to take home. Me and Nova both owe our lives to the NHS.
Nova is now nearly 15 months old, and is a happy, smiley, giggly little girl. She does still have a few health problems. She was recently diagnosed with a rare form of epilepsy called West Syndrome. It affects roughly 1 in 3000 infants in the UK each year. We’re not sure if it is a result of her prematurity, but the doctors haven’t ruled it out.
West Syndrome (Like in Nova’s case) is very often misdiagnosed. Nova was misdiagnosed with a reflux flare up. It turns out she was having seizures!
I don’t have any ill feelings towards the doctors who misdiagnosed her though, they can only be experts in so many conditions. One of my biggest regrets is not pushing harder for a diagnosis when I knew something was wrong. Early detection and treatment is key for a better outcome with West Syndrome. Unfortunately for Nova, by the time she was officially diagnosed her eyesight had gone, and she had regressed developmentally to that of a newborn despite being almost 9 months old. Although she is 15 months old now, she still cannot see properly and cannot sit, crawl or walk.
If the reader can take anything away from this, it is to always push if you think anything is wrong. You are the only voice your child has.
With thanks to Rebecca Bradley for sharing her story, raising awareness of premature birth and West Syndrome.
If you experience reduced movements or have any concerns through pregnancy, like Rebecca, contact your midwife straight away.
Do you have a story to share? Contact Catriona at firstname.lastname@example.org
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