Annie Janvier – författare

Every year in the United States, 12 per cent of all births are preterm births, 5 per cent of all babies need help to breathe at birth, and 3 per cent of neonates are born with at least one severe malformation. Many of these babies are hospitalized in a neonatal intensive care unit. Annie Janvier and her husband, Keith Barrington, are both pediatricians who specialize in the care of these sick babies and are internationally known for their research in this area. In 2005, when their daughter Violette was born extremely prematurely, four months before her due date, they faced the situation "from the other side" as parents. Despite knowing the scientific facts, they knew nothing about the experience itself. "Knowing how a respirator works did not help me be the mother of a baby on a respirator," writes Annie. She did not know how to navigate the guilt, the uncertainty, the fears, the predictions of providers, and the responses of friends and family. In a society obsessed with goals, performance, efficiency, and high percentages, she discovered that the daily lack of control that new parents of sick babies face changes their lives. And that, for physician parents, it also changes the way they practice medicine.

Most of the articles and books written about premature babies and neonatal intensive care units examine the technological and medical aspects of neonatology. Breathe, Baby, Breathe!, however, is written in the voice of a parent-doctor and tells the story of Violette and her parents, alongside the stories of other fragile babies and their families with different journeys and different outcomes. With the story of Violette at the core of the book, the interwoven stories and empirical articles provide essential insights into the medical world of premature birth. This original and clever blend of narrative and evidence provides a new, experiential view of the way forward during a parental crisis.

Every year in the United States, 12 per cent of all births are preterm births, 5 per cent of all babies need help to breathe at birth, and 3 per cent of neonates are born with at least one severe malformation. Many of these babies are hospitalized in a neonatal intensive care unit. Annie Janvier and her husband, Keith Barrington, are both pediatricians who specialize in the care of these sick babies and are internationally known for their research in this area. In 2005, when their daughter Violette was born extremely prematurely, four months before her due date, they faced the situation "from the other side" as parents. Despite knowing the scientific facts, they knew nothing about the experience itself. "Knowing how a respirator works did not help me be the mother of a baby on a respirator," writes Annie. She did not know how to navigate the guilt, the uncertainty, the fears, the predictions of providers, and the responses of friends and family. In a society obsessed with goals, performance, efficiency, and high percentages, she discovered that the daily lack of control that new parents of sick babies face changes their lives. And that, for physician parents, it also changes the way they practice medicine.

Most of the articles and books written about premature babies and neonatal intensive care units examine the technological and medical aspects of neonatology. Breathe, Baby, Breathe!, however, is written in the voice of a parent-doctor and tells the story of Violette and her parents, alongside the stories of other fragile babies and their families with different journeys and different outcomes. With the story of Violette at the core of the book, the interwoven stories and empirical articles provide essential insights into the medical world of premature birth. This original and clever blend of narrative and evidence provides a new, experiential view of the way forward during a parental crisis.

Most neonates who now survive intensive care would have died 50 years ago, and “nature” would have decided the outcomes, making ethical discussions about initiating or withholding resuscitation irrelevant. Medical developments in neonatology have changed the way we respond to diseases of neonates, to their illness, and to their parents. Not only as physicians, but also as a society.

Decisions on when to start, withhold, or withdraw life-saving interventions in critically ill neonates are among the most difficult decisions in pediatric practice. These decisions are fraught with ethical dilemmas, for example deciding whether withholding intensive care –leading to death- is superior to uncertain survival with a risk of disability and the additional burden of intensive care. This book covers important ethical questions that arise in neonatal intensive care units. Questions such as, whether to intervene medically and whether we are good at predicting the outcome of fragile neonates; whether a medical intervention should be withheld or withdrawn, and who should be primarily responsible for these decisions and how?