“You can't help but feel helpless when your child is in NICU” - Farhaa and Wasim’s story

In December 2022 we found out we were five weeks pregnant. I had a low-risk pregnancy, so we decided to go on holiday to Tunisia at 25 weeks. The week before we left, I saw what I thought was a mucus plug with a bit of blood, so we rang the paramedics. They came and rang the maternity assessment unit but they said we shouldn’t be concerned, and that everything was normal.

We double-checked that we could still go on holiday and were told again that it was okay. So we went away for a week, but when we came home, we were both ill with a bug and my waters broke at 26 weeks. It was so unexpected – one morning we woke up and found water and more blood.

As new parents, when we saw blood, we assumed the worst but the maternity unit at Leicester Royal Infirmary confirmed that our baby’s heartbeat was okay, movement was still there and instead, my waters had broken.

So many questions were running through our heads - how are we going to prepare for what’s to come? Is our baby going to be formed properly?

Initially I was kept in hospital for two days, our baby was monitored and was doing well. They explained that if I was going to give birth, it would be in the first 48 hours of my waters breaking. In the end, the doctor sent me home as if nothing had happened. The trouble was that I normally commuted to work in Nottingham but the doctors told me to rest, so I had to take my maternity leave straight away.

My contractions started the night after and I started to get a bit more pain. Wasim drove us to the hospital at around 11pm where we found out that I was two centimetres dilated. I remember just being sat in the waiting room and I felt a gush of blood. Every time I dilated I was losing blood, but the medical team was calm.

Riyadh didn’t arrive until 24 hours later. During that time, because it was just us in the delivery room, we asked my mum to come for support, as the whole experience was really scary. My parents drove two hours to Leicester to be with us.

Wasim and I asked the medical staff lots of questions because we wanted reassurance. For people who have never been through parenthood before, and especially being a parent to a premature baby, it’s so nerve-wracking.

I gave birth to Riyadh at 27 weeks, at 9pm on 18 May 2023. I was pushing and everything was fine, but at the last minute all I heard was a doctor say: “No, don't push, stop.” I was terrified and in pain, and then the next thing I knew was I was getting wheeled to theatre, thinking I was going to have to have a c-section.

Luckily, I kept pushing and he came out. The doctor explained after that my placenta had abrupted, so our baby’s heart rate was dropping, as was mine. They needed to get Riyadh out as quickly as possible.

After giving birth they asked me if I wanted to see Riyadh but because I was so worried, I wanted to put his life first. I kept asking, “Is he okay?” but they couldn’t confirm anything. After they wheeled me out of theatre, they showed him to me.

He was absolutely tiny, the size of a hand. He had a little hat on and was wrapped in a plastic bag. When I look back, there are funny memories too – for example, we knew we were having a boy, but one of the doctors said, “She's so beautiful!”, before confirming that he definitely was a boy. I panicked because I’d bought all blue clothes!

Then the doctors wheeled me back to my delivery suite, and at around two o'clock in the morning, we saw him for the first time. We were patient and allowed the medical professionals to stabilise him.

When we first went into NICU, it was an eerie feeling - all the lights were dim, and there were incubators everywhere with monitors making beeping noises. We knew that in the next few months we would have a battle on our hands. It was bittersweet because our baby had arrived and he was okay, but we were still overwhelmed because he looked so unwell.

What helped us most was the communication that Wasim and I had at the time – we were very open and supportive of each other. What carried us through was being positive every single day. Even when there were setbacks, we thought - how do we overcome this?

As parents, you'll have good days and bad days. It's how you overcome moments of disappointment, as sometimes the consultants might tell you certain things you don't want to hear. Not every day is going to be an easy ride.

For parents, we would say try to be positive, whether you're a firm believer in a supreme being or not. Our faith helped us a lot - we never wanted to question why this happened to us, but how are we dealing with this?

We always say we'd never change our journey, even though we did miss out on some things. Wasim never got to cut the umbilical cord and I never got to do skin-to-skin straight away. There are some moments where we wish we had a more normal birthing experience, but then again, we got to meet Riyadh three months early.

You do need to be emotionally strong because every baby in the neonatal unit is on their journey. We used to spend at least eight to nine hours a day in the hospital sitting by Riyadh’s incubator. We made really special friendships with other parents in the unit because we were sharing this journey.

Most of the day, the nurses would leave us to it and we would take control of Riyadh’s care.

Neither of us had held a newborn baby before Riyadh was born, and even if I had Riyadh at full term, I'd still be terrified to change a nappy, never mind on a 27-weeker. But it gave us so much strength and we wanted to be as involved as we could be.

Riyadh faced many medical battles in NICU. When he was first born, they identified he had E. coli in his eyes and later in his belly button. The medical staff rang us at about 11 p.m. and our hearts dropped because we didn't want to see him go through any more procedures. They thought that the bacteria had travelled up to his brain, so they needed to take spinal fluid by doing a lumbar puncture.

We prayed for Riyadh, and luckily, they didn’t need to do the lumbar puncture in the end.

The next hurdle was that Riyadh’s septum had ripped completely as a side effect of the CPAP. The team said they would have to call a tissue specialist which might require another procedure. Luckily again, his septum grew back.

Some moments in our neonatal journey were so stressful. At one point, I was so worried that I couldn't express. I cried to Wasim, and the nurses said we could either give him formula or donor milk.

Wasim and I are Muslim, so from a religious point of view, we had to find out if giving Riyadh donor milk was acceptable. In our religion, due to kinship ties, we need to know where the donor milk comes from. It can be difficult for our community in NICU as there are certain barriers or obstacles that we have to overcome.

In the end, we consulted a religious figurehead, but after some assurance from the staff at the hospital and giving myself a bit more time, my supply gradually started to build back up. We continued with breast milk until the near end of our NICU stay as Riyadh wasn’t latching on well enough, and then went with combi feeding between formula and breast milk.

After four weeks, and just before Father’s Day in June, Riyadh moved over to special care. He was thriving and it was amazing. When we left NICU, the other parents were all clapping as we wheeled him out. It was such a good moment because we all said to each other, we'll see you on the other side.

After two weeks we were transferred from Leicester Royal to Leicester General because Riyadh was stable, and because it is the nearest hospital to home. However, when he was in Leicester General we noticed that Riyadh had become unwell again.

His face was filled with a lot of fluid and we noticed that on the monitor, his respiratory rate was in the hundreds, around 180 or 170. He was working so hard to breathe and his head was bobbing. The nurses put him on his front, then on his side. He was just staring at us with these eyes and I remember the monitor wouldn't stop beeping. My husband said, “I know something is wrong.” He instinctively knew that Riyadh needed help.

Over time, what became apparent was that Riyadh had developed chronic lung disease and needed respiratory support. It was terrifying. That night we went home and the next morning they rang us to say Riyadh was being moved back to NICU at Leicester Royal. I remember crying – it felt like such a backward step. Suddenly we were back to the start - Riyadh was back in an incubator but was so much bigger. It was heartbreaking to see.

At this point, we were so used to him in a cot with clothes on, but instead he was back in a nappy, in the incubator. It was a lot to take in. They explained to us later that Riyadh had fluid on his lungs, but his face was full too - he looked like he had eye bags.

He had also had a massive increase in weight and they couldn't put a finger on why he had such a drastic jump. When they did another x-ray, our consultants showed us how his lungs had been damaged. It became even more apparent after our second visit back to intensive care.

One day we arrived at NICU and all the nurses had gowns, gloves, and masks on again. I remember the team saying they had taken Riyadh’s blood as he might have CMV (an infection).

The consultant showed us his x-ray and we could see that Riyadh’s lungs were cloudy - the CMV had caused the lungs to collapse. CMV can be contracted during pregnancy and I remembered when we came back from Tunisia, we were poorly. Naturally, as a mother, I thought I had made him unwell, and that it was my fault. If Riyadh caught CMV through me, it could be as severe as causing other organs to be impacted.

All of a sudden, it felt like our very first day in NICU again. Luckily, we found out that the CMV had been contracted after birth, which meant there were low traces of CMV in Riyadh’s blood and eventually, it became dormant. Riyadh got much better again and was transferred back to Leicester General for special care. We got him feeding, roomed in and the nurses said we could take him home on oxygen. They knew how much we had participated in his care.

Mentally, we always thought we'd be home by Riyadh’s due date (mid-August), and anything earlier would be a bonus. Riyadh came home on 2 August, and we eventually weaned him off oxygen. He came off it all together on my birthday – it was the best gift ever.

Our main advice for parents is:

You can't help but feel helpless when your child is in the neonatal unit. I can give you skin-to-skin and milk, but I can't make your septum grow back. I can't give you better lungs. We prayed constantly.

Despite the rollercoaster of emotions and difficult moments, it was a beautiful journey.

We made friends with other parents in the unit - checking in on them can mean a lot. Some parents were of an entirely different faith but would come to us and say, “I prayed for your baby” or, the parents that weren’t religious would encourage us to stay positive.

Other parents are a big part of your journey, as well as the nurses, the doctors - all the staff. Bliss also spreads the right messages and pushes for change within neonatal care. Our gratitude lies with the nurses who look after the babies 24 hours and we can't thank them highly enough, and the consultants too.

Words can't ever do justice for how they care for our babies.