An Intimate History of Premature Birth

Copyright

4th Estate

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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 to keep asking questions until you understand.

One name has been changed, and several last names omitted, to protect privacy. Some details have been omitted for the same reason. But nothing inaccurate has been added. Interviews have been condensed and edited for clarity.

Finally, there are parts of this book that might not be comfortable for pregnant people to read. There are parts that might be hard on parents whose babies are still in the neonatal intensive care unit (NICU). It’s true that giving birth prematurely is frightening and there can be long-term health implications. But the larger, overarching truth is this: The vast majority of babies born prematurely go on to live happy, healthy lives. No one wants to see their child face challenges. But the better information and support you have, the easier everything will be.

Prologue:

One Birth

The NICU [is] a strong, strange, powerful place.

There is probably no eerier place in a hospital than the NICU. One enters thinking that one is prepared to see tiny babies. But the babies are unimaginably tiny. They are magical … The babies seem almost, but not quite, human, almost, but not quite, fetal. In their chimerical, half-human, half-machine state they seem not only helpless and pitiful but also exotic, threatening, futuristic, feral, untamed, barbarous …

[And yet these] are just babies … They are real little people, and this spaceship, this high-tech roller coaster, this cyberwomb, is their introduction to life on earth.

—DR. JOHN D. LANTOS, THE LAZARUS CASE: LIFE-AND-DEATH ISSUES IN NEONATAL INTENSIVE CARE

THIS ISN’T THE story of one birth; it’s the story of millions of births. But, for me, it started with Mira.

The first time I saw my daughter she was wrapped in a pink-and-blue-striped hospital blanket, the same one that bundles every infant in every photo on Facebook. She was briefly held aloft for me to see by a nurse who was hustling her out of the operating room. My memory of the moment is unreliable. I know she was intubated, but I don’t remember the tube down her throat, as though some kind censor in my mind has blacked it out. I can’t remember anything about the way she looked, only the impossible, science-fiction smallness of her, a 1-pound, 13-ounce baby, the blur of scrubs in motion, and the way my husband’s face crumpled like a piece of paper at the sight of her, the way his head fell into his hands. Separated from my numbed bottom half by a hanging blue sheet, I felt weirdly calm, set apart from the proceedings. I had only one thought, like a beat: She’s alive. She’s alive. She’s still alive.

My body had been trying to kill her. Months earlier we were sitting in a young radiologist’s office when she pushed a printout of blood work results across the lacquered desk to us. “There’s a small chance, maybe a 1 percent chance, that she’ll be a little early, a little small,” said the doctor, pointing to one line on the sheet. She had just completed our twelve-week ultrasound and blood work, and everything was fine except for one abnormality: very low PAPP-A—the jaunty nickname for pregnancy-associated plasma protein A. The lack of it suggested a subpar placenta, the organ responsible for delivering nutrients and oxygen to a baby in the womb. My (our?) level of this protein was in the second percentile. “After twenty-four weeks, we’ll have you come in for growth scans to make sure she stays on her growth curve,” said the radiologist. “But it’s nothing to worry about.” Nothing to worry about; nothing to worry about. The refrain of my pregnancy.

Of course, I went back to my office and looked it up. Like the extremely responsible Googler that I am, I skipped the many results for pregnancy message-board threads with subject lines like “Low PAPP-A, how worried should I be?????” and went straight for the scientific literature, all of which went something like this: “… associated with stillbirth, infant death, intrauterine growth restriction, preterm birth, and preeclampsia.” It was all associations, not causations: nothing certain, but nothing good.

I went outside to escape my cubicle. I stood in the middle of the sidewalk, buffeted by bodies. In midtown Manhattan, there’s nowhere good to cry, so I balanced on a fire hydrant and sobbed. Two months earlier I had had a miscarriage at ten weeks and a painful dilation-and-extraction procedure to remove the dead fetus from my uterus, which seemed inclined to not give up. I sat up from the stirrups, noticed that my socks were splattered with a horror movie’s worth of blood, and started to understand in a bone-deep way that having a child was not going to be easy. I couldn’t imagine losing another one. But then, no one can.

At my next obstetrician appointment, my preferred OB, Dr. M., was away. The doctor covering for her wanted to talk about our risk for Down syndrome. It was odd, because although that blood serum test, the one that indicated low PAPP-A, can be used to assess a risk of a chromosomal abnormalities, I had also had a fetal DNA test, which identifies conditions like Down syndrome with better accuracy. The DNA had come back normal—“Normal female,” to be exact. (I was surprised how blissed out I was at the news that the baby was a girl.) Nevertheless, the doctor went over the fact that low PAPP-A is associated with chromosomal problems, even though, as far as I could tell, we knew that outcome wasn’t at all likely. I opted not to have an amniocentesis, which would have definitively ruled out a chromosomal syndrome, but which also carries a small risk of miscarriage. As for the other worries—the intrauterine growth restriction (IUGR), the preterm birth, stillbirth—I wasn’t able to extract any meaningful information. “I’ve had lots of patients with low PAPP-A who went on to have healthy, full-term babies,” the doctor said. “We’re going to monitor growth after twenty-four weeks. Try not to worry.”

SHE MEANT IT. It was only one ominous test result, and there was no other indication that anything was amiss. But what I didn’t know then was that when doctors kept saying, “Don’t worry,” they really meant two things: One, there probably really was nothing to worry about. Two, there was no point in worrying, because there was no treatment, no preventative, for what might happen. For what was about to happen. Not worrying was the best we could do. But I couldn’t manage it.

The weeks ticked by slowly: 14, 15, 16, 17, 18. Those stupid apps: Your baby is the size of a nectarine, an avocado, a pear, a sweet potato, a mango. At least, you hope she is. I tried not to worry. From about week 10 on, I had migraines that lasted days—or, rather, it seemed to be one long migraine that occasionally let up for a couple of hours. I wore sunglasses at work to look at my computer and strapped ice packs around my forehead. I dreamed of the day that I’d be able to take fistfuls of Advil again. But I also loved being pregnant. I loved the slippery flutters when I began to feel Mira move. I loved thinking about having a girl, the idea that I’d get to have another mother-daughter relationship, since my own mother died when I was in college. I thought about the books we’d read together. And I loved eating for two.

At the time, I was a food editor at Food & Wine magazine. My favorite selfish pleasure took on a comfortably virtuous cast. It was all for the baby! I drank blueberry-kale smoothies for breakfast and snacked on fat salted cashews. At work I tasted everything the test kitchen churned out: lamb tagine and coconut cake, bitter escarole salad and spiced black-eyed peas. Buttery rolls, homemade croissants. Fried oysters, roasted broccoli, and seafood gumbo. I thought of everything I ate as an experience she and I were having together. I imagined my fetus fat and happy, smacking her tiny lips, perfectly nourished, and destined to be an adventurous eater.

My husband, Amol, and I met in college. We are both only children who were raised in small-town Massachusetts. On our first date we talked for hours about the Red Sox and our early childhood memories of the 1986 World Series heartbreaker. We laughed a lot. It seemed like we were best friends the moment we met. He sustained me through my mother’s illness and early death and my father’s protracted struggle with both mental and physical illnesses.

We had been undecided on having a baby until we weren’t. We always had so much fun together, and suddenly it seemed so obvious that we should say yes. And when I was pregnant the first time, before the miscarriage, we were both giddy, and surprised to be giddy. I knew quite well that more love inevitably meant more vulnerability and sadness, too. But I wanted to be brave enough for all of it—brave enough to be someone’s mother.

At 20 weeks Mira was in the 23rd percentile for size and everything looked fine. At 24 weeks she had fallen into the 13th percentile. It wasn’t good news—falling off her growth curve could presage a problem with the placenta, which was the thing we were dreading—but it wasn’t catastrophic, either. So we waited and tried not to worry.

“I think she’s had a growth spurt,” I said to Amol on our way to our 28-week scan. It was uncharacteristically optimistic of me, and also incorrect. As soon as the wand hit my belly, I could tell by the ultrasound tech’s face that the news was not good. It was November 26 and I was due February 16. The tech disappeared to talk to the doctor.

“She’s not growing,” I said.

“Don’t jump to conclusions,” Amol said. “We don’t know anything yet.” I did, though.

We were ushered into another office, another lacquered desk, another doctor. Mira had indeed stopped growing entirely. She was below the first percentile; she was off the charts. She was approximately the size of a 26-week fetus. She was going to have to come early. How early was not clear. We had to go to the hospital. I had to get a steroid shot. I could not go back to work. (“What do you mean I can’t go back to work?” I heard myself say. “I have to go back to work.”) I could not so much as go for a walk.

We caught a cab to the NYU Langone medical center. On the way I called my cousin, who is a high-risk obstetrician. “How many weeks?” she asked. Twenty-eight and one day. “How many grams are they estimating?” Eight hundred. There was a long pause. “Okay,” she said. “Okay. You need the steroid shot.”

We had to go up to labor and delivery. We stood in silence, waiting for the elevator, until I realized I was no longer supposed to be standing whenever I could help it. I sat on a bench. “Nothing’s going to be normal now,” I said.

“Here we go, chicken,” said a nurse, jabbing an industrial-sized needle into my thigh. That was steroid shot number one. A fetal heart monitor on a thick belt was strapped around my less-than-impressive belly. Mira’s heart rate was decelerating, speeding up again, and then decelerating again, so they admitted me. I signed a consent for an emergency C-section, but it wasn’t clear when it would happen. A nurse came in and said they needed to start a magnesium drip, which would help protect Mira’s brain if she came soon. Amol ran out for a sandwich and the nurse hooked up the bag to my IV. Seeing that my husband was gone, she made some excuse to stay in my room and do paperwork while the magnesium started up. Suddenly I felt like I was burning up from the inside out. I couldn’t catch my breath. “I think I’m allergic to this,” I said to the nurse. She disappeared and came back with a resident, who checked me. I was fine. “It’s just the mag, honey,” said the nurse. “It makes you feel like that.” It was a twelve-hour course; I sweated and tossed through the night.

So there I was, sweaty and confused, when, early the next morning, a neonatology fellow dispatched from the NICU came in to tell us what to expect when you’re expecting a premature baby. At that point no one knew if I would need to deliver in hours, days, or weeks, but there seemed to be no hope of getting to term. Mira was diagnosed with severe intrauterine growth restriction as a result of “unexplained placental insufficiency,” a fancy way of saying that no one knew why the placenta was shutting down. I was not providing her with enough nutrition to grow. Soon I might also deprive her of oxygen. I was a well-fed food editor, and my fetus was starving.

The doctor perched awkwardly by the bed and vomited up a litany of potential complications that arise from being born too soon. Bleeding in the brain, holes in the heart, butterfly-wing lungs that struggled to inflate, intestines that died while the baby still lived, blindness, loss of IQ, attention issues, disabilities of all sorts, infection, cerebral palsy, death. He said we had roughly a 50-50 chance of getting out of this without a disability of some kind. Did we have any questions?

It was the first real information I had about prematurity, and I felt like I was drowning. I remembered that a pregnancy book I was reading had said that a 28-week baby has a 90 percent chance of survival—so I asked: Was that right? The doctor blinked. “Well, no, because she’s so small, more like the size of a 26-weeker, and because she’s been so stressed in utero, her odds of survival will be somewhere between a 26- and 28-weeker.” What did that mean? Eighty-five percent? Eighty-eight? I didn’t know, but I didn’t ask again.

“But,” he went on, brightening, “premature girls tend to do better than boys. And African Americans tend to do better than whites.” Amol and I took this in. (The evidence that black babies tend to fare better than others is actually mixed and not at all conclusive; on the other hand, there is new evidence that black and Latinx babies are more likely to get inferior NICU care.) “What about half-white, half-Indian girls,” I asked. “Does she get a little bump for being biracial?” No one laughed.

It was Thanksgiving Day, and I had gotten two steroid shots and the course of magnesium. Mira’s heart rate had steadied, so after scans upon scans that showed the umbilical vessels were still working to keep Mira in oxygen, the doctors decided they could discharge me home. The goal was to stay pregnant for as long as possible. My obstetrician, Dr. M., whom I loved, said the goal was 32 weeks. But the goal was also to keep Mira alive, and the two aims were not necessarily compatible. At some point—no one knew exactly when—my placenta, which I imagined as a beat-up old car, chugging along, belching smoke, would simply stop working, and she would suffocate and die. The high-wire act was to keep Mira inside until the last possible moment and then get her out. So they sent me home, but I needed to be on bed rest and I had to count kicks. If I couldn’t feel Mira moving, I had to come back to the hospital immediately.

For the two days that we were home, I lay on the couch and Mira moved more than she ever had before. She flipped and flopped. I allowed myself to imagine that everything might be okay. And then on Sunday, November 30, she just stopped. Amol was at Ikea, in a frenzy of baby-room buying and assembling. I ate a cookie and drank a glass of juice, because a sugar rush supposedly wakes a sleeping fetus. I moved around and tried to rouse her. “No kicks,” I texted Amol. “Fuck,” he texted back.

Back we went, through the Brooklyn-Battery Tunnel, up the FDR Drive, to the hospital, a drive that would soon be too familiar. I was weirdly calm, which is not like me. Amol looked nervous, which is not like him. After we parked the car, he was half jogging to get inside the hospital, and I said, “I don’t think it’s an emergency.” He gave me a funny look.

Back up to labor and delivery. A nurse behind a desk. “I’m 28 weeks and I’m not in labor,” I announced. “So, why are you here?” she asked. “Oh, no fetal movement and IUGR,” I said. They put me in a bed behind a curtain. The woman on the other side of the curtain was in made-for-TV labor, panting and moaning.

On ultrasound, Mira’s heart was still beating, but that was the only sign of life. She wasn’t moving; her tiny hands were slack. Her heart rate was completely steady—ominous, because heart rates are supposed to be variable; it’s a sign that the central nervous system is active. It was, I later learned, a category III fetal heart rate tracing, which necessitates delivery. It means death or brain damage is an imminent risk; there is no category IV.

The obstetrics resident asked for a second opinion, and another, older doctor with a formidably serious countenance came in, looked at the heart rate tracing, took control of the gel-slicked wand, and stared at the motionless fetus on the monitor for a moment. There was no choice presented, for which I am grateful, because I could not really grasp what was happening. Being born nearly 12 weeks early is bad, but being stillborn is worse. The doctor turned to me and said, “Things are going to happen very fast now.”

I lay back and covered my eyes with my hands. “Now?” I asked. “Right now?” A nurse was already taking my clothes off, putting a gown on me, finding a vein for an IV.

And just like that, I was swiftly wheeled toward an operating room with what seemed like dozens of doctors and nurses trotting along beside. Dr. M. was on call, and she came quickly down the hallway. “What’s the presentation?” she asked. “Transverse,” someone else said. Amol said later that it was like being in a car crash: the cold clutch of fear, the way time seems to slow in a sickening, unnatural way. A nurse pulled him aside; he’d have to wait outside the operating room while they set up; he needed to put on scrubs.

Someone warned me that they might not have time for an epidural—they were still looking for an anesthesiologist—in which case they’d just put me under. But as we got to the operating room, an anesthesiologist appeared out of nowhere and said he could do it. A nurse let me put my arms around her as he threaded the needle into my spinal column.