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Full Description
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.
Contents
Foreword by John D. Lantos and William Meadow
Acknowledgments
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
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
Survival Guide for 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
