“After hardship comes ease” – Umal’s story

I have five children - Ayub, Jannah, Safa, Bilaal and Adam, and three of them were born prematurely. My daughter Jannah was born at 23 weeks, but she sadly passed away. She would be nine now. My daughter Safa was born at 35+4 and Adam was born at 26+5 weeks.

I had two emergency c section births with Bilaal and Ayub, before my extremely premature births with Jannah and Adam. I have since been diagnosed with cervical incompetence and the doctors shared with me that there are a few studies that have linked fully dilated emergency c section and cervical incompetence.

33 years ago, my brother was born premature but other than him I didn’t know anyone who had a premature baby before. My concern mainly was the number of weeks at which they were born; my little brother was born after 29 weeks so I was worried about the extreme prematurity.

My emotions were going up and down and I just didn’t know if it was normal to have such premature babies – it felt like a rollercoaster.

I spent a lot of time on social media looking for other people’s stories to find out if anyone was going through a similar experience to me. Reading stories about other people’s experiences can really change their whole day.

When Jannah was born at 23 weeks and then passed away, I felt disconnected from it. I was told to be grateful that I had my first-born, Ayub, but I found it really hard. The post-natal ward was the hardest experience – it was so difficult to be surrounded by other babies when a baby is in NICU or if you’ve lost a baby. My husband was my absolute rock and I felt that I could speak to him about it which was so important for me.

My advice for any husband or partner is that words don’t always help – it’s the listening and just being there. We need someone to offload to.

After I lost Jannah, two weeks later my mum was diagnosed with thyroid cancer. Everything became so overwhelming. I spent the whole summer with my mum while she had treatment, but then when I came home, I was pregnant was with Safa, I had to focus not just on my pregnancy but my mum, too.

When we were told Safa was a girl, I started crying - I was so emotional and holding my breath.

There’s a saying in the Qur’an which says “after hardship comes ease” – which I think of often when I remember those times I spent in hospital, on the neonatal unit. There is always ease and happiness after hardship, so I try to be grateful. I just took every day as it came – and every day it did get easier.

When Adam was born at 26+5, he was in hospital for 13 weeks. When he was in NICU I would take milk and sit with him for a few hours every day, and then we he got to SCBU I was there from 9am until 9pm.

On the unit the Bliss Champion came to speak to me which was really nice - especially when I was sitting there cotside with my baby for hours. I also went to group sessions in the parent room which was really helpful.

The support I had from my husband and family was amazing – when Adam was in hospital, it was a waiting game and my children saw me go back and forth constantly between home and the hospital which was hard for them. Every evening we did a circle time together so we could talk about our feelings and pray for Adam, that he would be home soon.

Our parents from Somalia have suffered from PTSD silently from the civil war and hold the mentality of just getting on with it and not talking about feelings. However the next generation is trying to heal themselves in situations so it doesn’t leave any lasting trauma. We all believe that the will of Allah will help us.

I’m really lucky that I’ve grown up in the UK and can speak fluent English – it means that in a time of unconscious bias, I find that when I open my mouth I am given the opportunity to advocate.

People from my community don’t understand the rights they have because of the tunnel vision of getting on with it and not wanting to (or being able to) question things.

It’s much harder for other women from Somalia who may have a language barrier and struggle to speak up for themselves, or even understand what’s going on with their baby while they’re in neonatal care. They need more support.

We’re so grateful that Adam is happy and healthy now and is ready to start nursery soon.