Fragile Beginnings: Discoveries and Triumphs in the Newborn ICU

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Overview

Half a million babies are born prematurely in the United States every year. In this gripping medical narrative, Dr. Adam Wolfberg brings readers into the complex world of newborn intensive care, where brilliant but imperfect doctors do all they can to coax life into their tiny, injured patients. As a specialist in high-risk obstetrics and the father of a child born prematurely, Wolfberg explores the profound questions raised by such fragile ...

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Fragile Beginnings: Discoveries and Triumphs in the Newborn ICU

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Overview

Half a million babies are born prematurely in the United States every year. In this gripping medical narrative, Dr. Adam Wolfberg brings readers into the complex world of newborn intensive care, where brilliant but imperfect doctors do all they can to coax life into their tiny, injured patients. As a specialist in high-risk obstetrics and the father of a child born prematurely, Wolfberg explores the profound questions raised by such fragile beginnings, both from the front lines of the NICU and from his daughter’s bedside.
 
His daughter Larissa was born weighing under two pounds, and he describes the precipitous birth at six months that left her tenuously hanging on to life in an incubator. Ultrasound had diagnosed a devastating hemorrhage in her brain that doctors reasoned would give her only a 50 percent chance of having a normal IQ. Through Larissa’s early hospital course, Wolfberg examines the limitations of newborn intensive care medicine, the science of “neuroplasticity,” and the dilemmas that surround decision making at the beginning of life.
 
Wolfberg also takes us into the lab where researchers are working to improve the futures of children born too soon. He follows a young scientist, Jason Carmel, who was inspired to study how the brain adapts to injury when his twin brother was paralyzed in an accident. Through lucid medical reporting, Wolfberg details current scientific practices and discoveries, and explores the profound emotional and ethical issues raised by the advancing technology that allows us to save the lives of increasingly undeveloped preemies.
 
As they make decisions about life-saving care in the first hours of a premature infant’s life, doctors and parents must grapple with profound moral and medical questions: How aggressively should doctors try to save the life of a premature baby, who will be severely neurologically and physically impaired? What might that child’s quality of life be like after millions of dollars are spent on her care? Wolfberg traces the fits and starts of the physicians, government policy makers, and lawyers who have struggled over the years to find the best way to make these wrenching decisions. Written from Adam Wolfberg’s unique experience as a reporter, as a medical specialist and researcher, and as the father of a prematurely born daughter, Fragile Beginnings lays bare the struggles, discoveries, and triumphs of the newborn intensive care unit.

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    May11_3/Fragile_Beginnings_by_Adam_Wolfberg_BB_b058f18a96fb2ace792baa6fe7349a5cc42e92e5  

Editorial Reviews

Publishers Weekly
They are the littlest patients, facing daunting survival odds and, if they beat those, a lifetime of physical and mental hurdles. But the stories of extremely premature infants—the 2% born before 32 weeks of gestation—could have no better narrator than Wolfberg, a Tufts Medical Center obstetrician. Wolfberg’s own daughter, Larissa, was born three months prematurely, and is the focus of this astounding history of the advances in neonatal medical care, and understanding the brain’s ability to adapt to injury. This story is one of hope: the death rate for very premature babies has fallen dramatically thanks to groundbreaking advances in preventing the collapse of immature lungs and better use of oxygen, among others. Yet the challenges still remaining are daunting, particularly complications that cause cerebral palsy. Wolfberg describes research holding great promise and reviews the ethics of caring for infants whose hold on life is so tenuous, showing how the environment of the newborn nursery has shifted from one in which caregivers and parents had autonomy in decision-making to one open to controversy, disagreements, and court intervention. Wolfberg celebrates each milestone in this important field of medicine—and in nine-year-old Larissa’s remarkable life. (Feb.)
From the Publisher
"A page-turner for any parent of a premature infant."—Boston Globe

“Midway through Dr. Adam Wolfberg's internship, his daughter is born severely premature. Suddenly he finds himself on the other side of the medical curtain, navigating the terrifying maze of life-threatening illness. From his unique vantage point as physician and parent, Wolfberg brings us inside neonatology and intensive care units, on a journey that is both heart-wrenching and eye-opening. Honest, perceptive, engaging.”—Danielle Ofri, MD, PhD, author of Medicine in Translation and Singular Intimacies

“ [An] honest, heart-wrenching yet hopeful account.”—Isis Parenting

“Writing with a physician’s acuity and a father’s compassion, Adam Wolfberg presents a clear-eyed view of the challenges facing premature infants and their families, as well as the harrowing world of newborn intensive care. His honesty will be welcomed by anyone who has navigated this treacherous course.”—Elizabeth Mehren, Professor of Journalism, Boston University, and author of Born Too Soon

 "Adam Wolfberg is uniquely qualified to write this powerful, illuminating, and much-needed book. By blending the fears and hopes of his personal story with the knowledge and insight of his professional experience, he takes readers through every aspect of the newborn intensive care unit. Truth, unsweetened by sentimentality, informs every page. I learned far more than I imagined there was to learn while being so caught up in his daughter's journey that I couldn't put the book down."—Rachel Simon, author of The Story of a Beautiful Girl
 

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Product Details

  • ISBN-13: 9780807011607
  • Publisher: Beacon
  • Publication date: 2/7/2012
  • Pages: 176
  • Product dimensions: 6.00 (w) x 9.10 (h) x 0.90 (d)

Meet the Author

Adam Wolfberg, MD, MPH, is a specialist in high-risk obstetrics at Tufts Medical Center and an assistant professor at Tufts University School of Medicine. He was formerly a research fellow and faculty member in the Department of Neurology at Harvard Medical School. His research into fetal brain injury is supported by grants from the National Institutes of Health and private foundations. Wolfberg has been a contributor to Newsweek, the Chicago Tribune, Slate, WSJOnline, and the Boston Globe Sunday Magazine. He is a physician spokesperson for the March of Dimes.

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Table of Contents

Chapter 1 Fragile Beginnings 1

Chapter 2 Critical Hours 17

Chapter 3 Gifted Hands 35

Chapter 4 "The Degree of Impairment Is Difficult to Predict" 51

Chapter 5 Injury, and What Follows 65

Chapter 6 Whose Choice? 73

Chapter 7 Is Your Life Good ? 91

Chapter 8 The Recovery Pathway 103

Chapter 9 Making It Routine 111

Chapter 10 Gains of Function 123

Chapter 11 The Plasticity Treadmill 141

Chapter 12 Living the Dream 149

Acknowledgments 163

Notes 165

Index 169

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Customer Reviews

Average Rating 4
( 4 )
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Sort by: Showing all of 4 Customer Reviews
  • Anonymous

    Posted February 11, 2012

    Excellent read for those interested in babies, preemies or medicine.

    Though not a book most expectant mothers should add to their reading list, Fragile Beginnings provides insight into the difficult decisions that clinicians and families must make when working with these tiny, fragile babies.
    What does quality of life mean to a parent desperate to hold their only baby? Should extraordinary means be used for babies on the very edge of viability? What is the NICU experience like for parents? What supports and care considerations can help parents and babies?
    With one out of ten babies born prematurely in the US, these are important (and expensive) topics to consider. Dr. Wolfberg offers a unique perspective by sharing both personal and professional experiences, making this book especially valuable and compelling.
    Nancy Holtzman RN BSN IBCLC RLC

    3 out of 3 people found this review helpful.

    Was this review helpful? Yes  No   Report this review
  • Posted April 17, 2012

    This is an excellent book that can be read at many levels. The

    This is an excellent book that can be read at many levels. The author is an OB who, early in his residency, was faced with the extremely premature and difficult delivery of his third daughter. He is able to bring both the professional perspective of an MD and the personal one of a parent into focus for the reader, showing among other things how vulnerable the physicians themselves can be to the difficult decisions required by extreme prematurity. This is not a self-help book for the layperson facing such a situation, but read carefully, it will bring into the focus the questions that should be asked and give the confidence to ask them. Those with some scientific or philosophical background will be intrigued and excited by the new insights into neuro-plasticity that are changing the clinical protocols for these babies almost daily with positive results. Those of us who engage in the study and practice of medical ethics will find a wealthy resource for the classroom. Every reader will discover why these smallest, most vulnerable persons among us should not be prematurely dismissed.

    1 out of 1 people found this review helpful.

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  • Anonymous

    Posted August 24, 2013

    Not always sure what the purpose of this book was

    While I enjoyed the background story of the author's struggle w/ his extremely preterm daughter, the author rambled quite a bit leaving the reader wondering what the author's purpose was in writing the book. Was it catharsis? Was it to tell the story of his daughter? Was it to review the current research? Was it to show what great parents they are because they sought out modes of treatment that most parents don't have the resources to seek out? I am not sure. Portions of the book are very moving and to some degree heart wrenching but then the author immediately breaks the spell he has you under by going off on a tangent about something that at times seems completely unrelated.

    The book includes a lot of research review which may turn many readers off. I enjoyed reading the research review but thought it was not woven into the story very well. I feel for the author and his daughter's struggles but this book could have used a few more edits and rewrites and then probably would have been a great read.

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  • Anonymous

    Posted March 4, 2012

    Not sure what audience this book was meant for.

    The story of Larissa is well written, but if you are looking for guidance about your own experience with a premature birth, this book will be too technical/scientific to understand. I found that I consistently skipped multiple pages filled with medical history and quickly got lost in the jargon. This book defines success in perserverance, but not written for those that are not well versed in medicine.

    0 out of 1 people found this review helpful.

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