“Neonatal care is impossible to plan for” – Tom’s Story #NeonatalCareLeaveAndPay

Back in 2020, at the height of the pandemic, I spent lockdown continuing to work as my job at the time was classed as a key worker. What kept my wife and I positive during that time was that she was pregnant with our first child, a boy who we were very much looking forward to meet.

Because of the pandemic, I had been unable to join my wife at the majority of her midwife appointments and scans. That, coupled with the isolation, meant that I failed to spot her face had swollen or understand what that meant. I now know this is a key sign of preeclampsia.

One night my wife had a bad headache. We were worried about attending hospital due to the news, but we rang the triage team who advised that she attend. We arrived at the hospital at midnight, having brought nothing with us as she was only 32 weeks pregnant. I had to wait in the car because of the rules. I thought she would go in, get seen, and maybe be given some medication before coming home.  

Instead, my wife rang asking me to come into the hospital and meet her in the delivery suite. I thought this must be where the team were with it being late at night and went in, taking the lift upstairs. A midwife told me my wife was just behind me, I remember spinning around and seeing the lift open again, she was lying in a hospital bed, already covered in tubes. We were ushered into the delivery suite where it was explained that her blood pressure was dangerously high at 190 and she was suffering from preeclampsia, explaining what that meant. We were told that our baby would have to come that morning for the safety of them both.

We were still unprepared mentally for our son’s arrival. This was shocking news and all that was going through my mind was whether I was going to lose one or both of them.

My son was born at 32 weeks by emergency c-section weighing 3lb 6oz. I cut his cord, he spent a couple of minutes on his mum, and then was rushed to neonatal where he would stay for the next 28 days.

I was entitled to two week’s paternity leave. The problem was that I was forced to make a decision about when to take it. My wife was recovering from surgery, my son was in neonatal, and I had no idea how long he would be there. I wasn’t even 100% sure he would survive. How best could I support them?

I did not have the funds to support my family unpaid for any length of time, nor did I have the leave entitlement to keep my job if I chose to stop going in.

Neonatal care is not something with a fixed end date – it is impossible to plan for. I decided to wait until my son returned home to take paternity leave as he was being well cared for and I didn’t feel there was much more I could do for him, especially considering the rules which did not allow both parents to enter neonatal at the same time. Were it not for the compassion of a midwife on the second night, we would not have spent time or have any photos as the three of us until he came home. 

For a month, my routine became driving the hour round trip to the hospital to drop my wife off, who would have to stay there all day, working solidly in a highly stressful job, which continued to add to my workload at the time despite the situation, and then another hour round trip to the hospital to pick my wife up, spending 6pm until 8pm with my son whilst my wife had to wait in the car, still in pain from her surgery. I would feed him his milk with a syringe into his stomach tube, change his nappy, cuddle him, amazed at how tiny he was, he felt so fragile but did so well.

It is a strange feeling when your baby is in neonatal. You feel like you must perform a bedside vigil to prove yourself as a parent, but the reality is that it is just as important to take care of yourself and come to terms with the trauma that you and your partner have suffered. Being unable to take extended leave during that time meant that I was neither able to be there for my wife during the day nor properly look after myself emotionally or mentally.  

One evening, driving to the hospital, I felt a sharp pain in my side, I pulled into the car park, opened the door, and was immediately sick. I had to ring 111, thinking it was something serious. Luckily, it turned out to be a UTI, something I have no history of or have had since. I took antibiotics and carried on. I was so run down because I was desperately trying to deal with an impossible situation that was made more difficult by the inadequate leave entitlement and support from my then employer - something that contributed to my decision to leave them.

My son is now 4 and has started school and he is doing brilliantly. He has now been joined by our daughter who was born this year. She did not require neonatal care, and it is this that has highlighted how traumatic and unusual our first experience was. I am so proud of my wife for facing pregnancy again after everything she went through.

The Neonatal Leave being introduced is a step in the right direction. It will mean that some families will avoid that impossible situation. My hope is that this will lead to a cultural change that sees more employers do the right thing and go further, providing full pay to people who are forced to take Neonatal Leave, however long.