As a medical student I wanted to be a paediatrician. It was the combination of an inspirational registrar and children who made you smile as they transitioned from being unwell to feeling better again, sometimes literally before your eyes. However, once I was introduced to neonatology, I felt it was the perfect sub-specialty for me. I had an aptitude for inserting lines in small babies (a skill that has waned considerably over time) and I liked the clinical diversity.
Many patients have resonated with me for different reasons, but I met Grace* 25 years ago and it seems apt to reflect on her story on our College’s birthday.
“The paed’s here,” announced the midwife with a flourish as I entered Room 3 on the delivery unit. I was a neonatal registrar and had been asked to counsel parents. Mum was in preterm labour. It’s a scenario that most neonatologists will be familiar with. I was feeling slightly nervous as I had not been a registrar for long. I read the notes and noticed we were the same age, and that she was 23+6 weeks of gestation; on that day so was I. I was pleased I didn’t look pregnant.
I felt like an intruder into their grief, awkward and worried about saying the wrong thing.
The couple sat holding hands supporting each other with quiet dignity. I explained what would happen when the baby was born, that we would provide treatment if appropriate. The uncertainty of the prognosis hung in the room like a dark shadow. They were quiet, no questions. I suspected they didn’t want to hear the answers. I felt like an intruder into their grief, awkward and worried about saying the wrong thing. It didn’t seem appropriate to quote the statistics I’d looked up earlier. “God is in control,” Dad said. “Whatever will be, will be.”
I noted she hadn’t been given any antenatal steroids. I set off to find the obstetric registrar. "The lady in room 3 hasn’t had any steroids, it would help if she did." "She’s only 23 weeks," he said, but it was agreed that since she would be 24 weeks in less than 24 hours, she could have steroids.
At 11:45pm, Grace arrived. She was still 23+6 and I was still on duty. I attended the delivery supported by a senior house officer and an experienced neonatal nurse. She was vigorous at birth, stabilisation went well. She was quickly transferred to the neonatal unit for lines, fluids and medication. I wanted everything to go well for Grace. I provided an update to the on-call consultant: all was well, and he would review the next day. Grace's parents visited. They became upset when they saw her small foetal-like appearance, nothing like they expected a new baby to look like. I explained that despite how she looked, she was doing well.
Her mum cried. I tried not to get emotional, but a few tears slipped through - the shared understanding of the rollercoaster of emotions a journey through NICU provides.
Grace's stay on the neonatal unit was probably not that memorable to the neonatal staff as she had the usual neonatal course, punctuated by a few heart-stopping emergencies, that we know to expect on a NICU. She had her fair share of re-intubations, episodes of sepsis and a small intraventricular bleed on one side of her brain.
But it was definitely memorable for her parents. Her dad approached every crisis with a stoic calmness whilst her mum was at the opposite end of the spectrum - she had an energy that was infectious. To her mum's credit, Grace was one of the few babies on the unit with a large supply of expressed breast milk. I went off on maternity leave a few months later and Grace became a memory. I hoped she had done well.
Years later I was at a social function, I heard someone shout “Dr Ngozi” from across the room. It was Grace's mum. I held my breath not wanting to ask about Grace - did she survive, how was she doing? She pointed her out, playing with my daughter. She was now six years old, small for her age and walking with a limp. Doing well at school, a bit hyperactive. Her mum cried, I tried not to get emotional, but a few tears slipped through - the shared understanding of the rollercoaster of emotions a journey through NICU provides.
Twenty-five years ago, the outlook for 23 weekers was pretty bleak. Grace did well despite the overwhelming odds that weren’t in her favour. Today many more babies at the margins of viability survive. There haven’t been many significant new interventions in neonatology, just the realisation that doing everything a little bit better, the philosophy of searching for margins of improvement in everything you do, produces results. Today a consultant would attend Grace's delivery or review shortly after, there would be delayed cord clamping, and particular attention paid to her temperature. She would have volume guaranteed ventilation and hopefully not as many transfusions. She would have started nutrition much earlier and her parents would be on ward rounds if they wished.
The ongoing implementation of the neonatal critical care transformation review will contribute to marginal and consistent improvements in neonatal care, which will lead to better outcomes. We have done well but there is still more to do.
Dr Ngozi Edi-Osagie is a consultant neonatologist in Manchester and an honorary senior lecturer at University of Manchester. She is the chair of NHS England Clinical Reference Group for Neonatal Critical Care and is leading the implementation of neonatal critical care transformation review.
- *. Names and other information that could identify someone have been changed.