“I mostly felt sadness at the experience we had” – Ben’s story

When my wife and I sat down for dinner one Thursday evening, exactly 11 weeks short of our son’s due date, we could never have imagined that several hours later, Reuben would be born. But it would quickly become apparent that we had a problem and I called for an ambulance.

Having initially feared the worst, I began to relax at the hospital when Reuben’s heartbeat was being monitored and the situation seemed to be stabilising. Then, just as one of the midwives went to leave the room, Reuben’s heart rate dropped. When the two midwives confirmed to each other that three minutes had passed, I understood it to be significant, however, it was still a huge shock when a doctor came in and told us they would need to perform an emergency c-section.

I had no knowledge of prematurity whatsoever. I wondered if he would survive being born this early? What health implications it could cause? And what was going to happen next?

Shortly before 3am, Reuben was born weighing 868 grams. There were no screams or cries. When I heard the doctor say Reuben had a heartbeat and was breathing, I cried in relief that I was going to meet him and that he might be okay. By the time I was able to see him, he was wrapped up, had a woolly hat on and an oxygen mask held over his face. He was fleetingly wheeled over to my wife, Rosy, and then taken away. The doctors and nurses said congratulations to us - it was nice to hear but confusing because his early arrival seemed so wrong.

As we were taken back to the ward from the recovery room, the midwife said that we might be able to visit Reuben soon in NICU and that I would then need to go home and return during visiting hours (COVID-19 rules were still in place). I remember thinking, what’s ‘NICU’? not knowing it was the Neonatal Intensive Care Unit. Unfortunately, we couldn’t see him before my lift arrived. I got home at 6:30am, cried myself to sleep and was on my way back to the hospital two hours later.

When I returned to the hospital, it was explained to us that a surfactant had been administered to Reuben’s lungs to make it easier for him to breathe, but overall, he had made a ‘good start’. We were informed that he would be in hospital for at least two months. It was daunting but we were just concerned that he would be okay.

Seeing Reuben in his incubator with so many wires and tubes attached to him was distressing for us. It would be three days before we got to hold him, many more to just feel comfortable being in the environment of the unit. It felt impossible not to panic when alarms went off, if his oxygen levels dropped or he momentarily forgot to breathe (normal occurrences in prematurity).

On the second evening, as I stepped out of the hospital to drive home, it suddenly hit me how hungry and exhausted I was. I had barely thought to eat or rest. I eventually had to pull over on my way home and I broke down, I was completely overwhelmed with everything that was happening.

Throughout our NICU stay, we had our highs and lows. At one stage it was suspected he may have cystic fibrosis, we discovered he had a hernia which required an operation, and it was a disappointment to learn that he would remain on oxygen support after being discharged, but after nine weeks and three days, we were finally able to go home.

It was around six months after Reuben was born, when he no longer needed the oxygen support and was growing bigger, that I started to realise how much the experience had affected me mentally (Rosy was diagnosed with complex PTSD after 12 months). Having previously scrolled through pictures from the NICU daily, I suddenly found it difficult to look back at photos or think about the birth or NICU without getting emotional.

I mostly felt sadness for the experience we had, and guilt for feeling that way when we’d had a positive outcome, as I knew others had had much harder journeys than ours. I therefore resisted seeking help because I didn’t feel like I warranted it, and I hid my emotions from Rosy as I didn’t want her to worry about me.

Eventually I reached out to Bliss. One of the first things they suggested was joining a Facebook support group with other parents. I shared my story and was amazed at how many people had near-identical experiences. It was a relief to know that my feelings were at least normal and to understand that reactions to trauma commonly surface once the dust has settled.

It is a unique experience - you go through every heightened emotion all at once. Although we struggled at times, I don’t think we fully appreciated how difficult it was when we were in the moment and focused on making progress each day.

I strongly believe that there should be a greater awareness of prematurity and neonatal care during pregnancy. When birth plans are discussed, I feel it would be an ideal opportunity to explain that for a variety of reasons, sometimes babies will require care in NICU and to provide some information on what parents can expect. It would have helped me enormously.

I hope that in sharing my experience, others will be encouraged to be open with their feelings and seek support if they ever feel they need it, particularly other Dads who are less likely to ask for help. Please don’t suffer in silence.

If I had any other words of advice for NICU parents, I would remind them of the importance of looking after themselves, celebrating the small moments and little wins, never being afraid to ask questions or speak up if you are unhappy about something, and avoid comparing your situation to others as your experience is personal to you.

Finally, I’d just like to thank Bliss, the medical professionals, our friends and family who were there for us and supported us when we needed it most. We’ll be forever grateful.