“Prayer got me through the dark days” - Alma’s story #ByYourSide

My neonatal journey was completely unexpected because my pregnancy was going well.

But six weeks before my due date, I caught the Delta strain of Covid-19 and it was the start of a horrendous rollercoaster. By day seven, I started to struggle with my breathing and got admitted to hospital.

The majority of my family also got Covid-19. When I was in hospital, both my parents and older brother were also admitted, it was so stressful.

Whilst at hospital, my breathing continued to deteriorate resulting in me needing more oxygen. The doctor wanted to give me steroids to help the lung development of the baby in case she needed to come out early but I was very much in denial. I thought it was too early and I wasn’t ready.

A doctor from the neonatal unit came to see me and explained that this would be a late-term premature baby, so the chances were likely that we’d be in a good position.

My condition continued to worsen and so an emergency c-section was performed at 34 weeks and five days. My baby girl Aafiya was rushed down to the NICU and then I was taken down to the ICU.

I was all by myself too as my husband wasn't allowed to be there as he also had Covid-19.

When I woke up the next morning, the nurse in the ICU gave me the number for the NICU. I rang them and they gave me an update straight away and sent me photos of Aafiya.

Knowing my daughter was being well looked after in the NICU made me feel at ease whilst I was in the ICU and recovery ward for five days and couldn’t see her. On the fifth day, Aafiya had come off her oxygen and was doing a lot better. She was even having a bit of milk in a bottle.

The NICU team did transitional care and I got to see my baby. To finally see her after five days apart was so special and emotional. She was taking her feeds well and sleeping. The only issue at that point was she couldn't keep her body temperature.

Aafiya was put on a hot cot and we were told that once she could maintain the right temperature, we would be able to take her home.

However, three days later she became lethargic and wouldn't take her milk. It got quite worrying for myself and the nurses. It turned out Aafiya had sepsis. It was a horrendous day because she was taken for tests and then readmitted to the NICU.

I wasn’t allowed to visit my daughter in the NICU for a few days until my Covid’19 PCR test was negative. When I finally got to see Aafiya again she looked so much worse compared to when I first saw her.

Initially, she had a bit of weight on her face and she seemed like a healthy baby who weighed five and a half pounds. However now, she had lost all the weight off her face. It was a very overwhelming first-time experience in the NICU. All the machines and the constant beeping and alarms were quite daunting.

I'd never seen anything like it. Aafiya was in an incubator and I couldn’t hold her.

She ended up staying at The Grange University Hospital, Cwmbran NICU for six weeks and it continued to be a rollercoaster.

She deteriorated again after getting severe diarrhoea. The doctors didn’t know what was wrong with her so they got a gastroenterologist from Heath Hospital, Cardiff involved and there was even a discussion about transferring her there.

Thankfully there was no need for the transfer as she started to improve. It was one step forward, two steps back for a very long time. At one point she had made it out of ICU and went into the growing and learning nursery, before going back to ICU.

The nurses were just phenomenal - they became my family, especially when my husband wasn’t there.

I had real mum guilt with my eldest daughter Aaliyah as she was only two at the time. We were blessed that she could stay with my aunty whilst I was in hospital, so I knew she’d be okay, but I'd never spent a night away from her before.

Aaliyah hadn't seen me for two weeks, and then I had to leave her every day to go to the NICU to see Aafiya. It was really tough.

I would spend the entire morning with my daughter at home before putting her down for her afternoon nap. Once she was asleep my husband and I would leave for the NICU whilst my mum or aunty stayed at our house.

It meant that when Aaliyah woke up from her nap she would wonder where I’d gone and she did, every day for the six weeks we had to go to the NICU.

At the same time, it was horrendous having to leave my premature baby in the NICU. I'd get emotional leaving her every single day and it never, ever got easier but it was something I had to do.

My husband's work really helped - they let him have the entire time off work. I'm so glad that the Neonatal Leave and Pay Bill is being passed through Parliament, I'd be heartbroken if it doesn't.

I was constantly on the Bliss website when I was in the NICU, and our neonatal unit had a support page on Facebook too. I think that's where you find the most comfort, through reading other parents’ stories. Although I've got such a big family and amazing friends who were all there for me emotionally, they didn’t fully understand what I was going through.

I also know my faith had a huge part in helping me with the entire rollercoaster journey we went through. I'm a Muslim, I believe in Allah, and I just think everything comes from him.

Prayer really got me through the dark days when Aafiya severely deteriorated and we didn't know if she was going to survive. I kept telling my family and friends to please pray for her.

I truly believe part of why she did get better is because of all the prayers that everyone was sending her way. I’m so lucky now as I feel like I can talk about everything with a smile on my face, knowing how far we’ve come. Aafiya turned one on September 7 2022 and corrected age one on October 14 2022. We've come full circle now and she's doing amazingly.