An Intimate History of Premature Birth. Sarah DiGregorio
AN INTIMATE HISTORY OF PREMATURE BIRTH
And What It Teaches Us About Being Human
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This ebook first published in Great Britain in 2020 by 4th Estate
First published in the United States by Harper in 2020
Copyright © Sarah DiGregorio 2020
Cover photograph © Jill Lehmann Photography / Getty Images; cover design Ellie Game
Sarah DiGregorio asserts the moral right to be identified as the author of this work
A catalogue record for this book is available from the British Library
Epigraph here from The Ground Beneath Her Feet by Salman Rushdie © 1999. Published by Jonathan Cape.
Reprinted by permission of The Random House Group.
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Source ISBN: 9780008354947
Ebook Edition © January 2021 ISBN: 9780008354923
For Phyllis and Mira, my mother and my daughter, who taught me how to be brave.
And with gratitude to the nurses, physicians, and thinkers who were our partners in gestation.
Prologue: One Birth
Part I: The Unexpected: Millions of Births
1. What Happened?
2. Treatments and Outcomes
3. Viability and the Zone of Parental Discretion
Part II: The Body: Incubation
4. The History of Incubation: Coney Island, Chicken Eggs, and Changelings
5. The Modern Incubator, or How to Build a Giraffe
6. The Incubators of the Future: Babies in Bags
Part III: The Breath: Treating Respiratory Distress
7. Dr. Mildred Stahlman and the Miniature Iron Lung
8. Dr. Maria Delivoria-Papadopoulos and the Rugged Machine
9. JFK’s Lost Baby and the Advent of Surfactant
Part IV: The Self: Protecting the Premature Brain
10. The Revolutionary Practice of Listening to Preemies
11. Follow-up Care: Preemie Development Beyond the NICU
Part V: The Threshold: End-of-Life Issues at Birth
12. What Should We Do for 22-Week Babies?
13. Knowing When to Stop
14. Choice, Decisions, and the Messiness of Real Life
Part VI: The Crisis: The Body Under Stress
15. Racism Causes Preterm Birth
16. What Prematurity Means in Mississippi
17. Group Prenatal Care and the Power of Community
Part VII: The Invisibles: Breaking the Silence
18. The Hidden Trauma of Prematurity
19. Grown Preemies Speak for Themselves
About the Author
About the Publisher
Throughout this book, for flow and simplicity, I refer to preterm babies as preterm, premature, or, more casually, preemies. The current medical term is “preterm,” not “premature,” but, since they are both commonly used in the vernacular, I use them both.
In some cases I refer to a fetus as a baby, because that is how some people think of their fetuses, especially as the pregnancy progresses. In some instances, I have used it to accurately describe the way parents thought of their pregnancies.
In places, there are references to “pregnant women” instead of “pregnant people,” which might be read as conflating womanhood and the biological capacity for pregnancy, which is not always the case. Trans men and nonbinary people can also get pregnant and experience everything that pregnancy might entail, and I hope people of all genders will feel included by this book.
If there’s one thing I have learned, it’s that good physicians do not always agree; in fact, they more often disagree. The scientific and medical information in this book is as accurate as possible at the time of this writing—it changes all the time—but it is not comprehensive. I have not covered every possible iteration of preterm birth, nor is this a book to turn to for medical advice. If you are in need of medical advice, the very best thing you can do is ask your clinician, who knows your child, who is unique in the world. Show up with a notebook and a pen, and don’t be afraid