An Intimate History of Premature Birth. Sarah DiGregorio

      

      AN INTIMATE HISTORY OF PREMATURE BIRTH

      And What It Teaches Us About Being Human

      Sarah DiGregorio

       Copyright

      4th Estate

      An imprint of HarperCollinsPublishers

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      HarperCollinsPublishers

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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.

      All rights reserved under International and Pan-American Copyright Conventions. By payment of the required fees, you have been granted the non-exclusive, non-transferable right to access and read the text of this e-book on-screen. No part of this text may be reproduced, transmitted, down-loaded, decompiled, reverse engineered, or stored in or introduced into any information storage and retrieval system, in any form or by any means, whether electronic or mechanical, now known or hereinafter invented, without the express written permission of HarperCollins

      Source ISBN: 9780008354947

      Ebook Edition © January 2021 ISBN: 9780008354923

      Version: 2020-12-22

       Dedication

      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.

       Contents

       Cover

       Title Page

       Copyright

       Dedication

       Author’s Note

      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

       Epilogue

       Notes

       Index

       Acknowledgments

       About the Author

       About the Publisher

       Author’s Note

      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