Our baby woke up on her first Christmas Day without us - Karen's story

Just before Christmas, four years ago, I was seven months pregnant. My husband and I were looking forward to the holidays. It was due to be our last Christmas together before we became parents to our first little girl in February.

Then it began. I started getting signs that our baby was coming. At the hospital we were told it was most likely a false alarm, but I needed to stay in for 24 hours for monitoring and was given a steroid injection to help the baby’s lungs, just in case. Early next morning, I woke up in labour.

I was given a second steroid injection and moved to the labour ward and by 7am, the room filled with extra hospital staff as our baby was born. She was taken to the other side of the room and medics crowded round her whilst we waited to hear her voice or 'she's okay'. Eventually, we heard her cry. I was able to hold her for a precious few minutes before she was taken off to the “NICU”. At 2kg, she was so tiny. I was in shock.

The next few weeks were a rollercoaster. Two days after giving birth, I was discharged from hospital. Leaving hospital without our baby was a difficult experience that will stay with me forever. We were lucky though – we lived nearby. Every morning I drove to see her. I held her against my chest for hours, never tiring of staring at her amazing tiny features. As the days passed, the situation became clearer.

She had an atypical head shape which wasn't due to the birth. Her head had probably been moulded in the womb and it was probably why she was premature, but no one really knew how or why. The neurologists visited and she had a brain scan. She also needed a CT scan to check if the plates in her skull had prematurely fused together. If they had, she would need an operation.

I remember like it was yesterday being stood beside the CT scanner at the children’s hospital, desperately trying to hold back the tears as my vulnerable little girl lay alone, surrounded by the moving machine.

Emotionally, all I could focus on was her. Family and friends visited and then left again, coming from, and returning to their various sides of the country. Every day, going home without our baby really hurt. I expressed round the clock, woken by my alarm at night. The hideous experience of trying to express at 3am without my baby near, made more insufferable by those who said "well, at least you can get some sleep whilst your baby is in hospital".

Despite all the phone calls, texts and visits, we felt alone. Whatever the situation, it was ours to deal with. I told everyone I was fine, including myself. We were lucky. Around us were families who had been in NICU for much longer and with much more difficult stories.

I drove home from NICU on Christmas Eve, leaving our little girl at the hospital. She would wake up on her first Christmas Day without us. I sat in the car after arriving home, tears pouring, consumed with sadness and guilt. We went to the hospital first thing to find presents by her incubator, gifted by strangers. Some of the few who knew what we were going through, had made it out the other side and were passing on their best wishes.

Three weeks after she was born, we were able to try breast feeding. She could only breast feed a little before she tired, so she also had 'top ups' from a bottle which took less energy. From there, the routine began – breastfeed, bottle top-up, express, repeat. She thrived. A week later, I was re-admitted to hospital for us to be on the maternity ward together. Whilst sitting on the ward one day, one of the NICU consultants appeared.

My heart was in knots as she told me the CT scan had been examined by a specialist and our little girl would not need an operation on her head. She would be fine. The news took ages to sink in as I sat there, slowly realising just how scared I'd been. Shortly after, we were both discharged.

The following months comprised mixed emotions. Overwhelming gratitude to leave hospital with a healthy baby; thankful to the amazing professionals who helped our little girl; worried about her vulnerability outside the safe NICU environment; guilt that my body had let her down; thankful to have access to a fantastic healthcare system and sadness that the lottery of life means many don't have this; grief for the sudden, unexpected loss of my pregnancy bump, our third trimester and the 'normal birth experience'; emotionally closed in conversations with ‘normal mums’; absolute exhaustion from months of two-hourly breastfeeding, bottle top-ups and expressing; and upset at the injustice of it all followed by unrelenting guilt for thinking anything negative when many people have to deal with so much worse.

Some of my deepest fears came during my second pregnancy. As the pregnancy progressed, I grew increasingly petrified that this baby would also suffer by getting 'stuck' somehow, head-down in my womb. My midwife helped me get support from peri-natal services and I also had a scan in the later weeks which showed the baby was breech and gave me some desperately needed reassurance.

Now, I can look back with more perspective, my overwhelming feeling is amazement at our little girl. Four years on and no one would ever know that she started life so small. Our pride in her strength has no bounds. If I could go back and give myself some advice it would be to stop putting pressure on myself to deal quickly with my emotions. Yes, talking about our feelings is paramount to our mental health, but that doesn’t make it easy to do. It takes time. Time does heal, you will get through this and be stronger for it, for the best view really does come after the hardest climb.