Q&A with author Olivia Gordon

Journalist Olivia Gordon was 29 weeks pregnant when a scan revealed that her baby boy was critically ill, his lymphatic system failing. Despite in utero surgery, her son still arrived prematurely and spent five months in neonatal care.

This month sees the release of The First Breath, Olivia’s debut book which documents her journey through the neonatal unit and delves into the history of neonatal care. In this week’s blog, Olivia tells us what inspired her to write this story.

Q: Why did you write a book about how modern medicine saves the most fragile babies?

A: I'm a journalist and when my baby was born critically ill and spent his first five months in neonatal care. Although I temporarily gave up work and was just living the experience, I kept thinking: “Someone should write about this.” The NICU is such a surreal and intense place, and so is the expressing room, where mothers have the most extraordinary conversations.

As the years went by, I started writing more and more about the experiences of sick children and their families and doctors. I wanted to understand how my son's life had been saved and how modern medicine had got him here. It was a story that needed to be uncovered and told – not just my own neonatal story, but those of other families, and the doctors and nurses and scientists, too. A whole new generation of children - including my son Joel - are growing up having started their lives with an unprecedented level of medical intervention. The First Breath tells the experiences of families like ours, from the foetal medicine unit to the NICU to the operating theatre - and beyond the neonatal unit.

Q: What do you mean by ‘beyond the neonatal unit’?

A: The neonatal unit is often the start of a longer journey. My son came home with a gastrostomy, was tube-fed until he was two, didn’t walk until he was two-and-a-half, had had five operations by his fifth birthday and continues to be followed up by multiple clinicians. Others come home on oxygen. Prematurity alone can have a long-term impact on a child’s development, and some NICU children also have congenital conditions – my son was diagnosed while still in high dependency with a genetic syndrome called Noonan syndrome, which can cause developmental delays, heart problems, growth and gastro-intestinal issues. Joel is eight now, and doing brilliantly – he’s physically well, bright and full of life. But, like many children who start their lives with months in hospital and/or have genetic conditions, he has sensory differences - for example intense sensitivity to sounds - and still needs some extra help at school.

Q: In The First Breath you share your experience of postnatal depression and anxiety in the neonatal unit. What were the main implications of this?

A: Obviously everyone knows being a NICU parent is tough, but unless you have been through it yourself – especially expressing around the clock for a baby who you have barely touched - it’s hard to understand just how tough it is. At the time, I thought I was the only mother who was struggling to cope. Gradually, though, from speaking with other mothers (some of whose stories are shared in my book), I’ve learned it’s actually quite typical - and absolutely understandable - to experience some very hard emotions in the neonatal unit.

One of the main ones is guilt. I, for example, felt guilty every time I had to say goodbye to my son and leave him in the ward while I went home (even though I had no choice) and I felt even worse if I left the ward while another mother was still by her baby’s incubator. The reality, of course, is that parents need sleep and rest and really don’t need to feel guilty about this. I also became quite obsessed by hygiene (triggered by the hand-washing rules in the NICU) – I once spent ages scrubbing the cooler bag in which I brought my expressed milk to the unit, after someone coughed over it on the Tube. There was also the difficulty of having to parent in public and feeling constantly observed – in the unit, you have no privacy with your child. Ultimately, I believe most of the anxiety is caused by the unnatural separation between mother and baby which is standard in neonatal units. Stress to parents and babies is unavoidable in a NICU, but happily, across the NHS we are seeing rising awareness of neonatal mental health, and practices like Family Integrated Care and NIDCAP which empower parents and babies and allow them to spend more time together.

Q: When writing The First Breath, did you learn anything surprising about the history of neonatal care?

A: Until very recently we had no way of resuscitating premature babies – back in the 1750s, holding an onion to the baby’s nostrils was about as much help as medicine could give! For most of human history there was simply no such thing as neonatology or even paediatrics. It was only in mid-19^th century France that early incubators were invented (back then, an insulated cot warmed over a tub of hot water). And it was only in the mid-20^th century that ventilation became possible; then, in the 1980s and 1990s, we got surfactant and steroids, which support prem babies’ lungs. We have seen so much change in our lifetimes. My son would almost certainly not have survived if he had been born when I was, in 1978. Many of the mothers whose stories I tell in my book can say the same – like Eve, whose son was born at 23 weeks. We neonatal parents are part of history.