My name is Annie Janvier, I am a neonatologist, a baby doctor, but also the mom of 3 children, one of whom was born preterm at 24 weeks gestation.
My book BBBB asks this simple question : How can I be a parent in neonatology?
It is a book both for parents and clinicians.
Violette weighed only 670 grams (less than 1.5 pounds) when she was born. The doctors and nurses were a little afraid of this pair of parents: we know every test, every bit of clinical information, and every treatment. Nothing could escape our scrutiny, and they feared we would be pitiless judges of actions. We had all the medical knowledge, certainly, but in fact we knew nothing, nothing at all. When Violette was sick, so were we. When she was one month old, we had to plan her funeral. I was completely empty. I learned the meaning of devastation and emotional void.
I’ve always liked talking with the parents of my little patients. Throughout my career, I’ve spoken to them about things I’ve rarely spoken about with my own family or best friends: the meaning of life, death, faith; whether to embrace religion, reject it, or continue to ignore it; the fears, the guilt, the uncertainty. And it was these parents who helped me become a mother when I found myself at Violette’s bedside. Their stories took on a new meaning. Nothing to do with the scientific or academic knowledge I had mastered so well. It was no longer a matter of theoretical knowledge, nor of that automatic action-reaction mechanism that governed me as a doctor. It was the complete opposite. Seeing your child in critical condition, her life hanging by a thread (and some tubes!), has nothing to do with knowing and controlling. It’s about letting go, waiting, hoping, no longer being in control, compartmentalizing your brain. The words of those parents came back to me in relation to what I was experiencing, and I repeated them out loud. Those parents essentially saved me from drowning. Their stories taught me that I wasn’t crazy, incompetent, or a bad parent.
Before Violette’s birth, I had seen many parents who were, like me, tottering through the unit, hunched over, their eyes dull, dazed from hearing bad news again and again, wondering if it all would end some day. Parents who were afraid of calling because they didn’t want to hear bad news; parents who were plunged into anxiety every time the phone rang. Parents who felt guilty for not calling. Parents who were praying for the cruel uncertainty to end, for the train to finally be put back on the tracks toward a familiar destination. Parents who were doubting, who were wondering how to cope with it all, when they weren’t tempted to simply throw themselves off the train. Yet, in spite of their exhaustion, those parents always found strength somewhere.
This book is not a thesis explaining the scientific aspects of neonatology and intensive care for babies. The Internet is full of statistics, and it has thousands of scientific articles on sick babies. I’ve written quite a few myself. I knew all the science. But knowing how a respirator works didn’t help me be the mom of a baby on a respirator. This is a book about patience, becoming a parent, resilience, and transformation. These are stories of courageous families, and this is also our story.
This book is intended for anyone who is interested in sick babies, neonatology, and prematurity, but who is looking for an alternative to statistics and rational explanations. It is also intended for parents and the families who are doing their best to support them. Professionals in paediatrics and obstetrics, residents, medical students, ethicists will learn how to cultivate their empathy with their patients and families dealing with high-risk pregnancies and sick babies. Because, sometimes, in order to truly understand, one story is worth more than dozens of scientific chapters. Finally, this book is intended for anyone interested in the phenomenon of birth, in the complexity of families, and in the challenges of paediatrics and birth.
My experience has given me a new perspective on life, that precious gift that doesn’t come with an instruction manual. That is what I’m sharing with you in this book.
We are often stronger than we think. Even in our darkest moments