Breathe, Baby, Breathe!: Neonatal Intensive Care, Prematurity, and Complicated Pregnancies

By Annie Janvier, MD, PhD
Translated by Phyllis Aronoff and Howard Scott

© 2019

Every year in the United States, 12% of all births are preterm births, 5% of all babies need help to breathe at birth, and 3% 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, 4 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 clever blend of narratives and evidence provides a new, experiential view of the way forward during a parental crisis. The book ends with practical recommendations for clinicians, parents, and families.

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  • World Rights
  • Page Count: 280 pages
  • Dimensions: 6.0in x 1.0in x 9.0in
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These interwoven stories and articles provide essential insights into the medical world of premature birth, and into what happens to these babies and their families when things don’t go as planned.

Breathe, Baby, Breathe!: Neonatal Intensive Care, Prematurity, and Complicated Pregnancies

By Annie Janvier, MD, PhD
Translated by Phyllis Aronoff and Howard Scott

© 2019

Every year in the United States, 12% of all births are preterm births, 5% of all babies need help to breathe at birth, and 3% 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, 4 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 clever blend of narratives and evidence provides a new, experiential view of the way forward during a parental crisis. The book ends with practical recommendations for clinicians, parents, and families.

Continue Reading Read Less

Product Details

  • World Rights
  • Page Count: 280 pages
  • Dimensions: 6.0in x 1.0in x 9.0in
  • Reviews

    "Breathe, Baby, Breathe! is incredibly honest, and there are times when you are brought to tears. Dr. Janvier not only discusses what it is like to be the mother of a premature baby, but its impact on her own sense of self-worth and the challenges to her family."


    Lainie Ross, Professor of Clinical Medical Ethics and Pediatrician, University of Chicago

    "Breathe, Baby, Breathe! is a book about resignation, resilience, and transformation."


    Nicolas Krawiecki, MD, Professor Emeritus of Pediatrics, Emory University

    "Annie Janvier has written the best book by far about prematurity for parents and health care providers. As a neonatologist, bioethicist, and mother of an extremely preterm infant, her voice is unique, and we should all listen to her wise and eloquent words. Her intensely honest account of giving birth to Violette at 24 weeks’ gestation and her subsequent experiences as a mother in the NICU is quite remarkable. This amazing book is written from Annie’s heart but also from her brain and her gut."


    Edward Bell, MD, Vice Chair for Faculty Development, Department of Pediatrics, Professor of Pediatrics – Neonatology, University of Iowa Health Care
  • Author Information

    Annie Janvier is a professor of Paediatrics and Clinical Ethics at the University of Montreal, and a Neonatologist, clinical ethicist and researcher at CHU Sainte-Justine.


    Phyllis Aronoff and Howard Scott won the 2018 Governor General’s Literary Award for their translation of Descent into Night by Edem Awumey.


    Howard Scott and Phyllis Aronoff won the 2018 Governor General’s Literary Award for their translation of Descent into Night by Edem Awumey.
  • Table of contents

    Foreword by John D. Lantos and William Meadow
    Acknowledgments
    My Plastic in Your Baby
    Introduction

    Part 1: Labour and Prenatal Counselling
    The “Perfect Pregnancy” Is a Scam
    You Made Your Bed…
    12 May
    No Bed of Roses
    13 May
    15 May, Night
    End-of-Life Decisions for Extremely Low-Gestational-Age Infants: Why Simple Rules for Complicated Decisions Should Be Avoided
    Difficult Decisions
    Naming
    19 May
    20 May
    Personalized Decision Making: Practical Recommendations for Antenatal Counseling for Fragile Neonates

    Part 2: The Delivery and the First Days
    The Delivery
    Memories from Gene Dempsey
    23 May
    24 May
    Half Mother at Home
    26 May
    30 May
    3 June
    6 June
    7 June
    11 June
    13 June
    14 June
    The Big Berthas

    Part 3: The NICU
    Dear Violette
    Pepperoni, Pizza, and Sex
    17, 18 June
    For Audrey-Anne
    Shooting Stars
    19, 20 June
    21 June
    Life Trajectories
    23 June
    Red Underwear
    My Love
    24 June
    26 June
    27 June
    Other People
    Just Being There
    20 July
    August 18

    Part 4: Progress and Setbacks
    20 August
    22 August
    Dear World
    Learning to Fall
    24 August
    31 August
    Term MRI for Small Preterm Babies: Do Parents Really Want to Know, and Why Has Nobody Asked Them?
    Measuring and Communicating Meaningful Outcomes in Neonatology: A Family Perspective

    Part 5: Coming Home
    Germ-o-phobia
    Meanwhile, with My Other Kids…
    Rewriting Your Life
    A Mother’s Love
    The Backpack: The Sequel
    After Violette, Am I a Better Doctor?
    Tattoos, Beer, and Bow Ties: The Limits of Professionalism in Medicine
    26 September
    What’s Your Dream?
    22 May 2011
    Stronger and More Vulnerable: A Balanced View of the Impacts of the NICU on Parents

    Part 6: Neonatology Information for Parents, Families, Clinicians, and All Those Who Care about Babies
    Getting the Bad Stuff Out
    Seven Don’ts for Families and Friends Helping Parents
    The Best Ways to Help Parents in the NICU
    Ethics and Etiquette in Neonatal Intensive Care
    Notes
    Glossary of Common Abbreviations Used in the NICU
    Selected Bibliography
    Resources and Further Reading
    Index

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