Having experienced the world of neonatal care with our first child, who was born at 34 weeks in 2016, we were understandably nervous when expecting our second child in 2018. We anxiously counted down the days and were relieved to get to 34 weeks without our daughter arriving, then past 35 weeks, 36 weeks, and 37 weeks, and so when my wife went into labour one Saturday afternoon at 38 weeks, a lot of our anxiety had dissipated.
Labour went without complication and by Saturday evening we had a beautiful, seemingly healthy, new baby girl. We were discharged from Harlow hospital the next afternoon, but as our daughter had been struggling to keep any feeds down, and had not yet had a bowel movement, there was a niggling feeling of concern.
After a visit from the community midwife at home the following day, we were advised to go back to A&E for examination and an abdominal X-Ray. 24 hours later, we were in the operating theatre at Addenbrooke’s Hospital, waiting for our daughter to undergo emergency surgery to remove an obstruction in her small intestine.
What followed was a diagnosis of Cystic Fibrosis, and the beginning of a two month stay on the neonatal intensive care unit. During that time, when we struggled to come to terms with our own reality, we encountered so many other parents on the unit (and in the accommodation facility provided by The Sick Children’s Trust) who were going through the emotional turmoil of their own situations.
Some had tiny babies born as early as 24 weeks; others, like us, had babies born at full term but with complications or conditions that they knew would have a life-long impact on their child. Meeting so many people, from all kinds of backgrounds, and with babies in all kinds of different circumstances, was really powerful. You’d make particularly strong connections with some parents, and indeed we have lasting friends who we met on the neonatal unit at that time – especially those who also had term babies.
But above all there was an overwhelming sense of togetherness and solidarity regardless of whether your baby was premature or term. Aside from the immediate stress and concern for our new-born baby, life at home had to carry on for our 2-year-old son. Practically, there was only so long that we could rely on family support to look after him; emotionally, he increasingly needed us, and we yearned to be with him.
The prospect of leaving my wife and daughter at the hospital and only being able to visit occasionally, while taking over the full-time care of our son at home, and returning to my full-time job, seemed impossible. Fortunately, my employer was incredibly supportive, and I was told from the start that I could take as much time off as I needed.
Once I’d worked out a new daily routine of dropping our son off at nursery, and then spending the best part of an hour getting to the hospital to spend time on the neonatal unit, I gradually managed to factor in work time – fortuitously, perhaps, because my office at that time was only a 10 minute drive from the hospital. Rather than work being an unmanageable burden, I was given the flexibility for it to be able to work on my – and my family’s – terms.
In some ways it was a helpful re-introduction into the ‘real world’, beyond the bubble of the unit which could sometimes feel a bit like a parallel universe, far from the life you had known just a few weeks earlier. But at the same time, taking on these extra responsibilities meant that my wife was having to spend more time alone on the unit. It was difficult having to spend so much time apart, especially as our daughter’s health was up and down. And it was stressful not always being around to speak to doctors or be fully involved as a parent or carer.
Although I could not have asked for more from my employer, and felt incredibly grateful for their supportive approach to the situation, I was never quite sure of the terms on which I was being allowed to take this extended leave. Had my leave been under the terms of Neonatal Leave and Pay there would undoubtedly have been more clarity and structure, which perhaps would have taken off some of the pressure I was starting to put on myself to return to work. It would also have taken the decision out of my employers’ hands as to how to manage the situation.
I realise that I was fortunate, and that for some people their employer being able to make this decision could mean the difference between being given paid leave, or not. For this reason, I strongly feel that the Neonatal Leave and Pay Bill is mutually beneficial for both employee and employer. Ultimately, I hope that the introduction of Neonatal Leave and Pay gives non-birthing partners and their families the space and time to navigate an incredibly stressful period in their lives without the additional worry of financial insecurity, and that it will eliminate the enforced return to work for those who previously might have had no other option.
