"Having a baby on a neonatal unit is the toughest thing I’ve ever gone through" - Dan's story #ByYourSide

Dan 1

Dan's baby girl Ayla was born 16 weeks early. For World Prematurity Day 2023, Dan shares how his neonatal journey impacted him, and what got him through it.

Listen to Dan's story

Click the 'play' button to hear Dan's story in his own words.

On 1 October 2021, our daughter Ayla was born at 24 weeks and three days.

We arrived at Heartlands Hospital at 06:50 am. My girlfriend, Catherine, had been awake most of the night with what we thought was round ligament pain. She began to bleed at around 05:40 so we went straight to the hospital. We’d experienced a threatened miscarriage earlier in the pregnancy and were fearing the worst.

By around 09:30 am we were told Catherine was going into labour. We couldn’t believe it - it was and will always be the most bittersweet moment. The joy of being told your baby is on the way was overshadowed by the fear your baby probably won’t make it.

Catherine gave birth to Ayla at 12:25 p.m. We were rushed to the emergency room on the neonatal unit – eight staff were recorded as present but it felt like 80.

I thought my baby was going to die. I didn’t find any information about a baby being born 16 weeks early and surviving. I couldn’t get my head around why this was happening. Ayla was moved onto a table, and for three minutes and forty-five seconds, there wasn’t a heartbeat. There are no words to give justice to my feelings during that time. Then, a faint heartbeat was found. Heart rate was at 65% and blood saturation was at 58%. Thirty seconds passed.

Ayla hadn’t changed colour. The team had to insert an ET tube into her throat and suction the lungs (this is called Laryngoscope). At this point, the heartbeat disappeared. After two minutes and ten seconds, a heartbeat was found and Ayla was alive.

They’d allowed Ayla to be placed on Catherine’s chest for a moment as we looked down at this beautiful little creation. From there the team moved Ayla to an incubator in a unit on the ward and we were left with the midwife who did a great job with us.

The day after, we were given a tour of the neonatal unit and were advised of the rules of the unit. A weekly COVID test was required and we weren’t allowed on the unit if we had symptoms and hadn’t done any tests. It was so noisy and there were so many people going in and out of this ward. I felt overwhelmed. The beeps of the machines, I still hear them. I was fixated on numbers dropping and rising.

For Ayla to go home, she had to come off a CPAP machine and all oxygen support, then move to another unit at Heartlands, and then to Good Hope Hospital for the final stage of care, which was proving she could be breastfed and breathe independent of any machine.

Ayla weighed 700g when she was born. Her skin was bright red except for bruises which she had all over her body and it was difficult to see. When I first saw her in the incubator she had all sorts of wires coming in and out of her body.

She was wrapped in a towel shaped like a U and the lower half of her body was covered by bubble wrap. We weren’t allowed to hold her but we were able to open the side doors of the incubator to touch her. I remember her skin felt like some sort of warm watery rubber. Her hand was smaller than my index fingernail. She was just a tiny bit longer than my hand.

Dan 2

A week after she was born, we were allowed to hold her (this is called kangaroo care). The benefits of this were for mutual bonding due to chemicals being released – oxytocin – in the brain between us. We were so happy that we could do this and Ayla took to us well. She even left imprints on our chests when she came out. Then there was an issue with the left side of her back as her blood would only saturate with oxygen when she lay on the right. We needed her to stay in the 89%-100% zone for oxygen for her to improve.

We were told that if we wanted Ayla home for Christmas then we’d need to complete the rest of our training (tube training, oxygen training, first aid training and showing how to administer medicines etc), so we did that in preparation. It’s a strange feeling completing an educational course whilst going through everything but it gave me confidence to look after my baby if she had to come home with oxygen support.

After four weeks, we were told the infection markers were extremely high, they’d done a lumbar puncture and administered medicine but there wasn’t any progress. It was looking like Ayla was overwhelmed and the E. coli was one illness too many.

We were no longer allowed kangaroo care as she was too ill. This went on for around a fortnight. We were then told that there would be nothing more the staff could do if she didn’t recover. It was heart-breaking. It was all down to Ayla now.

Ayla was still having difficulty breathing but after the course of antibiotics for the second bout of E. coli had worn off it was looking positive and the consultant on the ward agreed with us that we should drop the oxygen requirement and test her lungs.

The consultant agreed to try lowering the breathing support. In terms of having her home and healthy without additional equipment, it was now or never.

After the first day, her stats remained the same. That was a good sign. Then the following day, the stats went from a starting point of 8.1 LPM to 7.1 and then to 6.0 with barely any alarms ringing within the first week and that was just incredible. Ayla was going from strength to strength. The staff had done such an amazing job at this point but now it was on Ayla to power through. She remained steady for a few more days but then went 4.0 and then 3.0 on 29 November.

At this point, we were still situated in the critical care unit and the same space as when we arrived. We’d seen about twenty babies arrive and then be sent home. As happy as we were for these people, I will freely admit to being envious of them. Whenever a baby was able to go home, the parents would ring this special bell three times as they were clapped off the ward by all the staff. I’d smile for them but inside I just wished that was us. I told myself: “That will be us one day.” It helped get me through.

We’d had to spend two consecutive nights on the unit looking after Ayla to prepare us for bringing her home. We ‘slept’ next to a machine that beeped every three seconds and Ayla would wake every two hours for a feed. Catherine being the warrior she is handled it superbly.

We completed 48 hours on the unit and we were told we’d be able to take Ayla home! We’d packed our things away.

I still remember when we brought her home, we just didn’t know what to do initially. After so long, we had to adjust to normality. It’s kind of funny that.

Ayla battled two serious infections, had several blood and plasma transfusions, was born with a hole in her heart and had to have her ROP corrected. The fact we have a happy and healthy baby aged two is nothing short of a miracle. It shows just how strong she is.

It also shows how magnificent the charities involved and the staff are. They’re fantastic, hard-working people and the unsung heroes of society.

If we hadn’t had the dedicated staff looking after Ayla, I dread to think what could have happened. The information on the pamphlets and website of Bliss is what got me through. It helped me understand this side of life for which I was unaware and it put my mind at ease quite a lot of the time.

Ayla is my first child and when I talk about what we had to go through, people don’t understand. I don’t expect them to - it must be so difficult for people to truly relate unless they’ve been through it like we have. Having a baby on a neonatal unit is the toughest thing I’ve ever gone through and for most people, it’ll be their biggest challenge too.

For the parents that are experiencing this, please take the above for what it is. It’s an experience that someone like you has gone through and it gets better. The staff on the units know what they’re doing and are under considerable pressure, every question you have, even the ones you think are stupid are worth asking and if you need to talk to someone about how you feel then do so.”

Dan 3