Early: An Intimate History of Premature Birth and What It Teaches Us About Being Human

by Sarah DiGregorio

Overview

“Sarah DiGregorio delves deeply into the fraught world of premature birth. With bracing honesty, she recounts her own story and the stories of other women who draw on the power of love and meld it with cutting-edge science, as they struggle to save the lives of their newborns. This book opens our minds and hearts to a world that is rarely seen with such clarity.”—Jerome Groopman, MD, Recanati Professor at Harvard Medical School and author of The Anatomy of Hope

The Neonatal Intensive Care Unit (NICU) is a place made of stories—where humanity, ethics, and science collide in dramatic and deeply personal ways, as parents, physicians, and nurses grapple with sometimes unanswerable questions raised by premature birth. When does life begin? When and how should life end? And what does it mean to be human? For the first time, journalist Sarah DiGregorio explores the fascinating evolution of neonatology and its significant breakthroughs—modern medicine can now save infants at five and a half months gestation who weigh less than a pound, when only fifty years ago there were few effective treatments for premature babies. 

Weaving her own story and those of other parents and NICU clinicians with in-depth reporting, DiGregorio examines the history and future of one of the most boundary-pushing medical disciplines: how the first American NICU was set up as a sideshow on the Coney Island boardwalk; how modern advancements have allowed viability to be pushed to a mere twenty-two weeks; the political, cultural, and ethical issues that continue to arise in the face of dramatic scientific developments; and the clinicians at the front lines who are moving to new frontiers. Eye-opening and vital, Early uses premature birth as a window into our own humanity.

Product Details

ISBN-13:	9780062820310
Publisher:	HarperCollins
Publication date:	02/15/2022
Pages:	368
Sales rank:	199,745
Product dimensions:	5.20(w) x 7.90(h) x 1.10(d)

About the Author

Sarah DiGregorio is the critically acclaimed author of Early: An Intimate History of Premature Birth and What it Teaches Us About Being Human and Taking Care: The Revolutionary Story of Nursing. She is a freelance journalist who has written on health care and other topics for the New York Times, Washington Post, Wall Street Journal, Slate, Insider, and Catapult. She lives in Brooklyn, New York, with her daughter and husband.

Table of Contents

Author's Note ix

Prologue: One Birth 1

Part I The Unexpected: Millions of Births

1 What Happened? 31

2 Treatments and Outcomes 39

3 Viability and the Zone of Parental Discretion 45

Part II The Body: Incubation

4 The History of Incubation: Coney Island, Chicken Eggs, and Changelings 51

5 The Modern Incubator, or How to Build a Giraffe 74

6 The Incubators of the Future: Babies in Bags 83

Part III The Breath: Treating Respiratory Distress

7 Dr. Mildred Stahlman and the Miniature Iron Lung 99

8 Dr. Maria Delivoria-Papadopoulos and the Rugged Machine 112

9 JFK's Lost Baby and the Advent of Surfactant 121

Part IV The Self: Protecting the Premature Brain

10 The Revolutionary Practice of Listening to Preemies 133

11 Follow-up Care: Preemie Development Beyond the NICU 153

Part V The Threshold: End-of-Life Issues at Birth

12 What Should We Do for 22-Week Babies? 177

13 Knowing When to Stop 203

14 Choice, Decisions, and the Messiness of Real Life 227

Part VI The Crisis: The Body Under Stress

15 Racism Causes Preterm Birth 243

16 What Prematurity Means in Mississippi 260

17 Group Prenatal Care and the Power of Community 271

Part VII The Invisibles: Breaking the Silence

18 The Hidden Trauma of Prematurity 289

19 Grown Preemies Speak for Themselves 297

Epilogue 306

Acknowledgments 309

Notes 313

Index 337

Editorial Reviews

Sarah DiGregorio delves deeply into the fraught world of premature birth. With bracing honesty, she recounts her own story and the stories of other women who draw on the power of love and meld it with cutting-edge science as they struggle to save the life of their newborn. This book opens our minds and hearts to a world that is rarely seen with such clarity.” — Jerome Groopman, MD, Recanati Professor, Harvard Medical School, author of The Anatomy of Hope

"A must read for anyone interested in the science—or the experience—of preterm birth." — Emily Oster, author of the New York Times bestseller Cribsheet and Expecting Better

"The heart of DiGregorio’s illuminating book isn’t just about her family’s journey; it’s an expansive examination of the history and ethics of neonatology." — New York Times Book Review

“Fascinating. DiGregorio has strung together a riveting history of the preemie, from carnival incubator shows (really!) to the possible future of baby ziplocks. Throughout she has tenderly woven her personal experience with her tiny daughter in the NICU, a space where machine and mother uneasily coparent. At times shocking, heartbreaking, and inspiring, the tension between technology and humanity is evident throughout, and DiGregorio does not shy away from it.” — Jennifer Block, author of Everything Below the Waist

"A sweeping cultural history, a consistently surprising and insightful examination on the porous line between life and death, and a graceful and hauntingly clear-eyed memoir all in one. Feels destined to live on shelves for a long time." — Jayson Greene, author of Once More We Saw Stars

"Every health professional who cares for babies should read this book. A meticulously researched and stirring tribute to the life-affirming work that goes on in NICUs every day." — Dr. John D. Lantos, pediatric bioethicist and author of Neonatal Bioethics: The Moral Challenges of Medical Innovation

"Sarah DiGregorio's rigorous, gimlet-eyed reporting on premature birth is surpassed only by her empathy and affection for the people whose lives comprise its history and give it meaning. How can we better care for the most vulnerable people in our communities who, as DiGregorio makes clear, include not only the tiniest babies but the adults who come before them? . . . She triumphs at making issues typically confined to the NICU relevant to every human being." — Angela Garbes, author of Like a Mother

“DiGregorio makes clear that the problems facing preterm babies can be enormous, that consequences may not be apparent for years, and that the appropriateness of treatment can be debated. . . . Clear reporting that wisely urges careful decision-making by clinicians and parents alike.” — Kirkus Reviews

"Compassionate... Sensitively approaching the myriad practical and ethical challenges involved in caring for such fragile babies, DiGregorio gives vivid, individualized portraits of struggling parents, premature infants who developed into thriving children, and the specialists dedicated to helping them... DiGregorio delivers a candid yet gentle work with appeal for prospective parents and anyone interested in 'what premature birth [can] teach us about being human.'" — Publishers Weekly

From the Publisher

Fascinating. DiGregorio has strung together a riveting history of the preemie, from carnival incubator shows (really!) to the possible future of baby ziplocks. Throughout she has tenderly woven her personal experience with her tiny daughter in the NICU, a space where machine and mother uneasily coparent. At times shocking, heartbreaking, and inspiring, the tension between technology and humanity is evident throughout, and DiGregorio does not shy away from it.

Jennifer Block

"Sarah DiGregorio's rigorous, gimlet-eyed reporting on premature birth is surpassed only by her empathy and affection for the people whose lives comprise its history and give it meaning. How can we better care for the most vulnerable people in our communities who, as DiGregorio makes clear, include not only the tiniest babies but the adults who come before them? . . . She triumphs at making issues typically confined to the NICU relevant to every human being."

Angela Garbes

"A sweeping cultural history, a consistently surprising and insightful examination on the porous line between life and death, and a graceful and hauntingly clear-eyed memoir all in one. Feels destined to live on shelves for a long time."

Jayson Greene

…the heart of DiGregorio's illuminating book isn't just about her family's journey; it's an expansive examination of the history and ethics of neonatology…[DiGregorio] is such a beautiful storyteller, I found myself underlining passages, turning corners of pages and keeping track of the page numbers at the back of the book until I had a hodgepodge of numbers scribbled on top of each other.

The New York Times Book Review - Randi Hutter Epstein

12/02/2019

After giving birth at 28 weeks, food writer DiGregorio (Adventures in Slow Cooking) wanted to better understand her experience; the result is this compassionate exploration of preterm birth. Along with personal recollections of “the impossible, science-fiction smallness” of her one-pound, 13-ounce baby, DiGregorio describes the technologies, such as incubators and ventilators, that have improved survival rates for premature infants, and the improvements in care, such as a greater sensitivity to brain development, that have improved their quality of life. She also poses urgent, and as yet unresolved, questions, such as why African-American women have the highest rates of preterm birth, or at what point a preterm baby can still be considered viable—the latter question confronting parents with the agonizing choice between “active and comfort care.” Sensitively approaching the myriad practical and ethical challenges involved in caring for such fragile babies, DiGregorio gives vivid, individualized portraits of struggling parents, premature infants who developed into thriving children, and the specialists dedicated to helping them. Reassuringly emphasizing that most preterm babies develop into happy, fulfilled children, DiGregorio delivers a candid yet gentle work with appeal for prospective parents and anyone interested in “what premature birth teach us about being human.” (Jan.)

Publishers Weekly

"A must read for anyone interested in the science—or the experience—of preterm birth."

Emily Oster

"The heart of DiGregorio’s illuminating book isn’t just about her family’s journey; it’s an expansive examination of the history and ethics of neonatology."

New York Times Book Review

"Every health professional who cares for babies should read this book. A meticulously researched and stirring tribute to the life-affirming work that goes on in NICUs every day."

Dr. John D. Lantos

Sarah DiGregorio delves deeply into the fraught world of premature birth. With bracing honesty, she recounts her own story and the stories of other women who draw on the power of love and meld it with cutting-edge science as they struggle to save the life of their newborn. This book opens our minds and hearts to a world that is rarely seen with such clarity.

Jerome Groopman

12/01/2019

In the United States today, only 1.6 percent of babies are born before 32 weeks and fewer than one percent are born weighing less than two pounds. DiGregorio, a journalist, had been alerted by her obstetrician that her baby might be born prematurely. To prepare, DiGregorio learned all she could about premature births before Mira's birth, and continued to research the subject afterwards. The author explores the plight of premature babies in earlier years (Mira, now a lively and relatively healthy child, was born by emergency C-section almost 12 weeks early and weighing only one and a half pounds; she likely would not have survived), discusses medical advances in prenatal as well as neonatal care, and considers bioethical issues regarding extremely high-risk babies. DiGregorio also points out the importance of knowing hospital's policies regarding end-of-life care. VERDICT A well-written, carefully researched book that should be of vital interest to potential parents and their friends and families.—Marcia G. Welsh, Dartmouth Coll. Lib., Hanover, NH

Library Journal

2019-10-21
Impelled by the premature birth of her daughter, a journalist explores how modern medicine has changed regarding the care of babies born too early and of the ethical issues that can be involved.

In the prologue, DiGregorio, a Brooklyn-based freelance journalist (New York Times, Wall Street Journal, Food & Wine, etc.), describes the experience of having an extremely-low-weight child in the hospital's neonatal intensive care unit. Her focus then broadens from memoir to journalistic report. In the first chapter, she reveals how common preterm births are: 15 million annually worldwide, with the United States having "the worst rate in the industrialized world." Throughout, DiGregorio provides illuminating chronicles of her interviews with neonatal care professionals. She examines the development of incubators and then looks into the future, when we may see the use of a biobag, a sort of artificial womb that has been used successfully with premature lambs. The author also explores such issues as retinopathy and breathing problems and the techniques that doctors have adopted to handle them. In this section, she shows how the death of Jaqueline Kennedy's premature son, Patrick, led to greater funding for research into respiratory care. DiGregorio makes clear that the problems facing preterm babies can be enormous, that consequences may not be apparent for years, and that the appropriateness of treatment can be debated, and she argues for deep consideration of the question of whether to use or to withhold life support for extremely premature babies. The author then turns to the causes of prematurity. One among the many factors is stress, leading her to suggest that the higher rate of premature births among African American women is a result of living in a racist environment; a separate chapter on prematurity in Mississippi illuminates this issue. Finally, DiGregorio gives voice to grown preemies and their parents, selecting a few of them to share their stories with readers.

Clear reporting that wisely urges careful decision-making by clinicians and parents alike.

Kirkus Reviews