AN INTIMATE HISTORY OF PREMATURE BIRTH

And What It Teaches Us About Being Human

Sarah DiGregorio

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.

I was half crying into an oxygen mask that had been hastily strapped over my face. The oxygen was for Mira’s benefit; she was perfectly still deep inside me. I lay back and my bottom half went heavy. Amol was still outside. “If something happens to me, can you tell my husband I love him?” I asked a nurse. “Oh, honey, we’re worried about your baby, not you,” she replied. I had a twist of shame. I knew that. But it was hard for me to tell the difference between us, to locate the threat of death, our bodies still knotted together.

“Incision!” said Dr. M. A few minutes of tugging later she called out, “It’s a girl!”—which felt like a gift, a moment to pretend. The neonatal team snatched her up. Silence.

I found out later that there had been nineteen clinicians there in the operating room, and for a while all I could hear was a low murmur of voices, a shuffling of feet. There was Dr. M., beyond the blue curtain, rummaging around in my empty uterus. There was the blinding flare of the lights above. There was Amol, wide-eyed and mute in his blue scrubs and hair net, sitting next to me. There was the neonatal team, huddled around a warmer. “Is she alive?” I asked the silence. “Yeah, they’re working on her,” said a nurse. It wasn’t quite an answer. Someone pulled the oxygen mask off my face.

Mira’s medical record tells me that the cord was wrapped around her torso and neck and the amniotic fluid was stained with meconium. The cord was cut and she was immediately handed to the NICU team and brought to a warmer. “Limp, no spontaneous breaths,” reports the record. She was blue. “Stim [stimulated] and dried but no improvement,” it goes on. “PPV [positive pressure ventilation] started. Intubated in delivery room.”

Once the ventilator was breathing for her, Mira stabilized. “Color and O2 status slowly improved,” says the record. There was a noticeable change in the air in the operating room; she had been successfully resuscitated, the first and most important of a long series of steps that would have to go right. A nurse took a photo of Mira; in it her eyes are squeezed shut and she is grimacing around the tube in her mouth. Lying on the operating table, I couldn’t see her, but I said her name out loud—“Mira”—so she would know I was there. And then, as I was being sewn up, she was whisked away.

What strikes me now is how much human ingenuity and skill and technology was marshaled there to save her, and how utterly helpless and, in a way, incidental, she and I both were. My body was unable to sustain her; her body was unable to sustain itself. She was not so much alive as in limbo.

Afterward, I was confused. Everything seemed to be moving slowly and strangely, reality twisted and distorted. My body felt like an empty house that had been vacated in a rush, leaving dirty dishes in the sink. I couldn’t figure out why I was bleeding from between my legs, since I seemed to have had an operation on my stomach. The muscles in my lower abdomen were twitching violently. It seemed suddenly crucial that I delete the pregnancy app on my phone, since I was no longer pregnant, and my baby was definitely not the size of a butternut squash. I remember a doctor plopping my placenta into what I thought was a takeout container for noodle soup. (It was actually a lab container.)

During that first hour, we were not allowed to see Mira. After they stabilized her in the NICU, Amol was able to visit. The photos that a nurse took of that first father-daughter encounter showed Amol bent over a riot of tubes and lines that hid our 1-pound, 13-ounce daughter.

I had to be able to stand up and get into a wheelchair without fainting before I could go to the NICU myself. In the middle of that first night, after a few false starts—one of which ended in a full-on blackout—I managed to plant myself in the wheelchair. I remember what seemed like a cold breeze on my face; the wheelchair seemed to be moving very fast down a very white hallway, into an elevator, down to the ninth floor, then another white hallway, shoes squeaking. As the automatic doors swept open, I had a sudden sense that I wasn’t ready, that this could not be happening, and an equally strong and contrary urge to get to her, find her, see her.

Amol pushed me down a hallway, past rows of incubators, to a hushed, darkened back room, where Mira lay on her back inside what looked like a space-age pod, immobilized by the ventilator that rhythmically inflated her skeletal chest. She was naked except for the world’s tiniest diaper; her body was reddish, her forehead creased in what looked like discomfort or worry, lots of fine black hair tufting out of the tiny knit cap on her head. Her blunt little nose was so obviously Amol’s that we had recognized it on ultrasounds. Her hands looked long and elegant, her feet strangely large next to her emaciated legs. Her still-forming ears were fused to the side of her head in whorls. She didn’t seem to have nipples yet; weeks later they just appeared one day. Her torso was covered with sticky sensors that monitored her vital signs; she had an IV line in her umbilical stump. There were more leads, lines, and tubes than baby.

“You can touch her,” a nurse said, popping open one of the portholes for me. I could touch her? I put my hand into the warm incubator and gingerly placed my index finger on the sole of her one-and-a-half-inch foot. There is a photo of that moment, me in a hospital gown looking down at her through the plastic. She is only a foot or so away, but I look like I am staring into the far distance.

I didn’t think of it at the time, but I had been in a NICU once before.

There is another photo, this one a Polaroid from 1979: It is of my mother and father standing in front of an incubator, this one more glass box than spaceship. My mother, in her own hospital gown, is reaching through the portholes to cup my body in her hands. An IV protrudes from the top of my head. I was 3 pounds, 14 ounces, 2 pounds more than my own daughter would be at birth.

The look on my mother’s face in the photo is identical to my own, across thirty-five years: love, terror, and exhaustion, the same cocktail coursing through the veins of most brand-new parents. But something else, too: not guilt, exactly, but something close to it—helplessness. Everyone realizes eventually that they can’t protect their children from suffering. A premature birth is a particularly crushing introduction to that concept. Fundamentally, a mother’s body is supposed to be able to cradle and sustain a fetus until it’s fully built: ready to breathe air, drink milk, be held.

I don’t know much about the circumstances of my own birth, and my twenty-something self didn’t ask my mother the questions my thirty-something self would have, had she lived. I know I was due in November but born in September, likely around 32 weeks’ gestation. I was dangerously anemic and jaundiced, and I needed to be transferred by ambulance to Women & Infants Hospital in Providence, Rhode Island, for an exchange blood transfusion, in which all of the blood in a baby’s body is swapped out for donor blood a little at a time. One possible explanation for both the preterm labor and the extreme jaundice—one that I can’t verify because both my parents are dead and the medical records are gone—is Rh disease, a condition in which, because of a mismatch in blood type, a mother’s immune system attacks a fetus’s blood. It is as though the mother is allergic to the baby. (Rh disease is now treatable with medication the mother can take during pregnancy.)

In both my mother’s pregnancy and mine, there was nothing wrong with us or our babies. None of us were sick. (In this, of course, we were lucky.) It was the pregnancy itself—the organism of us together—that went wrong. For my mother, my daughter, and me, the only cure was the end of the pregnancy and the clumsy, miraculous gestation science could provide.

The NICU is both futuristic and primal. It’s a place where babies the size of your hand are saved by some of the most advanced technology in the world, but also where all the wizardry of twenty-first-century medicine is a crude and ineffective substitute for a human uterus. Sometimes it is a place where parents hold their babies for the first time only when it’s been decided to let them die. It’s a place where we, the mothers, sit next to the pods that are doing the work our bodies should have done: breathing for, warming, and feeding our babies.

In the soup of postpartum hormones, it hurt me physically to look at Mira. I found myself taking one painful breath and then another, unable to do anything except live from one second to the next.

The first few days of an extremely low-birth-weight baby’s life are critical. Mira was in the back of the NICU, where the smallest, sickest babies were sequestered. No one could say why the placenta had failed, but it could mean an infection or a genetic abnormality. She was put on antibiotics, just in case, and held under blue lights to counter her high bilirubin count. She wore a little mask to protect her eyes from the lights. Between that, the ventilator, and the tape holding it all in place, most of her face was obscured. She flailed and jerked and shuddered, her little hands reaching and stretching. For the first few days she got intravenous nutrition through a central line straight into a large vein near her heart before a feeding tube was slipped down her throat and secured in place with more tape on her chin. She had one-third of a cup of blood in her entire body.

Every morning the attending neonatologist, the fellows, the residents, and the nurses gathered around each NICU bedside one by one and summarized each baby’s status and the plan for the day; it’s called rounding. On December 2, the morning of her third day, the day I was to be discharged, I sat in my hospital gown next to her pod clutching a notebook and wrote down everything Dr. K.—the attending neonatologist, kind, patient, petite, with a ramrod-straight bearing—said about Mira. My notes begin: “RDS: premature lung disease (???). 780 grams. Peeing a lot. Caffeine. (???) BP stable.”

Dr. K. explained that almost all babies Mira’s size have a lung disease called respiratory distress syndrome, which means simply that her lungs were not mature enough to breathe on their own, lacking surfactant to keep them inflated. They are also given caffeine as a respiratory stimulant—the medical version of a sharp pat on the cheek: Stay with us!

A resident looked at me, clutching my pen, writing furiously. “Oh, Mommy’s taking notes,” he said, and chuckled. I wanted to tell him that I was an editor, or had been.

Later that day I was able to hold her for the first time, a practice called kangaroo care, in which the parent’s bare skin against the baby’s bare skin helps them stay warm out of the incubator. Our nurse gently extracted Mira from her pod, trailing all her lines, tethers, and tubes behind, and carefully placed her under my hospital gown, on my chest. She was a collapsible, bony, furred warmth; she curled up with her head beneath my chin, her legs between my breasts. My vision wobbled, but not from tears; I had the sensation of being underwater, of being put back together.

Born emaciated—the term in her chart was “fetal malnourishment”—Mira continued to lose weight. Her skin wrinkled and hung off her toothpick bones. When a nurse changed her diaper (more a scrap of plasticky cotton than anything else), I was horrified to see that she had no bum, none at all. Just legs ending in a bony area with a rectum. She seemed in obvious discomfort, painfully exposed. I wanted to unzip my body and stuff her back in. “I’d prefer she not fall below 700 grams,” said Dr. K. when Mira weighed in at 720 grams (1.5 pounds) on day 4. “How do we keep her from going below 700 grams?” I asked. There was no answer because there was no answer.

The sight of a one-and-a-half-pound baby short-circuits something in the brain. There’s no roundness, no eye contact, no burbling. No baby-ness. Newborns evolved to be sweet and cuddly, a way to get us to take care of them and ensure the survival of the species. Lots of parents say they have upsetting difficulty in bonding with their preterm infant, at least partly because we haven’t evolved to connect with babies that look and act like this.

We don’t even really have a word for them, these children, these tiniest of people, who are not fetuses but are not quite babies yet. Being born didn’t really make Mira into a newborn. I loved her, and she was my child, but she wasn’t quite a baby, or at least not like any baby I had ever imagined. Her brain, if I could have seen it, looked like an almost-smooth lima bean, with only a few ridges and gyrations. The furrowed gray matter called the cortex—the mammalian brain region responsible for language, memory, sensory processing, and almost everything we think of as our humanness—was still developing.

I was sure she would die. At our first family meeting with the doctors, I asked it point-blank. You’re right. She could die, they said. But she was doing well, all things considered. She’d quickly graduated from the ventilator to the CPAP (continuous positive airway pressure), a kind of oxygen mask like one the world’s tiniest fighter pilot might wear. It delivered pressurized oxygen to her nose, helping her breathe. On day 5, she finally stopped losing weight and started to gain it, gram by gram. A tiny bit of breast milk—one, then two, then three milliliters—was going down her tube and being successfully digested. Her first brain ultrasound had come back clean, no bleeds, knock wood. Did I want to talk about my fears about disability, the future? I did not. All my conceptions about the future had evaporated.

I imagined making deals with a witch. You might be able to have your heart’s desire—your living child—but there will be a cost, now or later. If you’re lucky enough to have snatched her back from death, someday there will be a knock on the door, and it will be the witch, hand outstretched for payment.

For most of us, the lucky ones, it’s a no-brainer, this deal. You can save my baby but she may have asthma later? A motor delay? A limp? Vision problems? Done. Done. Done. But for some, those born on the very margins of viability at around 22 or 23 weeks, the cost in suffering can be very high, the prognosis deeply uncertain, and parents and doctors sometimes have to make terrible choices about whether to start or continue treatment. Even for us, safely and firmly four weeks past the viability zone, the doctors made it clear that they could not predict what costs Mira would bear.

There was nothing wrong with me, so I was discharged. I knew it was coming, but when I got in the elevator to go home, leaving her in the hospital, I lost my breath and bent double. My days crystallized into a strange routine. I pumped every three hours around the clock and froze most of what I pumped, since only the tiniest amount of milk was going down Mira’s tube. I got up in the morning, pumped, and then drove from our apartment in Brooklyn to the NICU in Manhattan. Amol took two weeks off and then had to go back to work: Our medical insurance depended on it. I sat by Mira’s pod. I watched the monitor that showed her pulse oxygenation, respiratory rate, and heart rate. I read The Martian by Andy Weir, which seemed appropriate, since I also felt stranded on another planet. Mira’s lips were chapped from the oxygen mask over her nose and mouth. She often batted at it with her little red hands. The only time her wrinkled face relaxed was when a nurse removed the mask for a few seconds a couple times a day to make sure her skin was holding up, that she wasn’t developing lesions. I’d take the opportunity to dip a piece of gauze in sterile water and rub it across her lips to moisten them and rub away the dead skin, and her whole body would go limp in what looked like relief.

Several times a day Mira’s heart rate would suddenly plummet toward zero, setting off a round of increasingly shrill beeping from her monitor. A nurse would hustle over; pause a moment to see if Mira could handle the bradycardia, or low heart rate, episode on her own, and, if not, tap her back or chest to get her heart going again while I sat frozen, watching the number, willing it to climb. There was nothing wrong with her heart. The same thing would happen to the baby in the incubator across from ours, and it would be my turn to watch the back of the mother sitting there stiffen as she stared up at the number on her baby’s monitor. Sometimes very premature babies forget to breathe. Their hearts neglect to beat. That is the kind of thing that is completely routine in the NICU.

I was allowed to do kangaroo care once a day, for up to three hours. Those were the only times I could hold her. I was not to cuddle or stroke or speak too loudly, which would overwhelm her delicate brain and could cause a bradycardia episode or lead to sensory problems when she was older. I cupped her tiny head and her tiny bottom against me and reclined, entirely still. I looked forward to those hours so much that it felt like a bad case of nerves before a date. And I started to lose my mind.

Maybe we were all a little unhinged, those of us keeping vigil by an incubator day after day. I remember one mother in the breast-milk pumping room who obsessed over her own bowel movements, plagued by the feeling that something unnameable and terrible was wrong with her. My thwarted mind started to behave strangely, unreliably, spitefully. A five-pound baby would come into the NICU and I’d think, Jesus, what is that giant baby doing here? Or someone’s husband would cough a few times, spreading infection, I imagined, and I’d fantasize about slowly strangling him or cocking a gun and firing. It was a ferocious, helpless, wounded-animal response—Stay away from my baby—one that made me unrecognizable to myself.

Infection, including a cold, was one of the things that could, in theory at least, kill Mira. It was the middle of flu season. When I got to the NICU in the morning, I put on surgical gloves and pulled out the super-extra-sanitizing wipes that kill HIV and hepatitis C. They said FOR STAFF ONLY, but I thought they probably wouldn’t kick me out for using the wrong wipes.

I claimed a chair and wiped it down. I wiped down my phone, my Kindle, my bag, especially the straps, and the surfaces around Mira’s incubator. If someone, anyone, touched any part of my chair during the day, I’d wipe the whole thing down again. Before I came close to the incubator, I washed my hands with scalding water and then rubbed them with foaming hand sanitizer. If my hands touched anything—my jeans, a magazine, my face—I would sanitize them again. Before kangaroo care, I would run to the bathroom—using paper towels to avoid touching the door handle, the sink, any surface—and wash my chest, arms, and hands. Then, back by her pod, I’d rub my entire chest down with the foaming sanitizer, then frantically fan myself dry. At one point, one of my favorite nurses looked me up and down as I gobbed hand sanitizer between my breasts and asked, “Has your chest been somewhere I should know about?”

Doorknobs began to terrify me. Stores were full of danger—other people, multiple surfaces touched by so many. I’d shoot dagger eyes at anyone who came within a foot of me at a bodega. If you sneezed in my general direction, I genuinely contemplated murder. I’d bring groceries home and scrub them with sanitizing wipes. Who knew how many people had touched that can of tomatoes? Amol caught a cold and I was afraid to touch him or go anywhere near him. He slept on the couch. I demanded that he wear a surgical mask and gloves around the house until he was better, and maybe a little longer than that. My hands cracked and bled from all the washing, and I was secretly glad. It seemed appropriate; it was the way I felt inside made visible.

It’s obvious to me now that I was experiencing postpartum anxiety or depression or both. But the situation seemed so extreme that it was hard to modulate my response. If a doctor tells me that, in theory, my baby could die of infection, is it reasonable to wash my hands twice? Ten times? Studies have shown that the parents of NICU babies are at risk for post-traumatic stress disorder (PTSD)—especially symptoms like fearful hyperarousal. One nurse I talked to said that she feels there should be a therapist for the parents on staff at every NICU. As it is, the nurses end up fulfilling that role as best they can.

Really, the nurses run the NICU. The physicians pop in and out, but it’s the nurses who notice when something is wrong, who know when to recommend a blood transfusion, who restart babies’ hearts dozens of times each day. For the smallest babies in our NICU, there was a ratio of two patients per nurse, so the relationship was intense. All day I watched the nurses. I eavesdropped on their conversations about where to get lunch; I imagined their lives. In a strange way I loved them, was obsessed with them. They were all women: fit, ponytailed, sneakered, and swift. They looked like Neutrogena commercials. They handled Mira and all her wires and probes with infinitely gentle skill, like someone wrapping the most fragile gift in the world or dismantling a bomb.

Every three hours our nurse would do Mira’s “care”: raise the lid on her incubator to change her diaper, take her temperature, check her skin for lesions, adjust her CPAP mask, and shift her position. They’d attach an empty syringe to the end of her feeding tube and draw up to check the contents of her stomach. If she’d successfully digested the last tiny dose of breast milk, another dose would be queued up to drip down into her over the course of the next several hours.

There was something about the open-ward setting, in which we were sitting inches from other parents and other babies, that paradoxically didn’t encourage intimacy. Maybe it’s that there was already too much of it. But there was one mom across from us whom I started chatting with in the early days. Her son was one of the only babies smaller than Mira in the NICU. She and I used to sit in companionable silence next to our babies, sometimes with our husbands, too, and then meet in the pumping room. We’d sit facing each other on the plastic chairs, boobs out, nipples suctioning in and out of the pump flanges, and make small talk: about her dog, our jobs, the logistics of taking maternity leave so early. How to get your milk to come in. (The NICU experience is not a recipe for successful lactation.) We’d ask about each other’s babies, how we chose their names, how they were doing. She always said her son was critical but stable, but it was clear that he was sicker than Mira, with multiple organs not working on their own. She still hadn’t been able to hold him. She never got more than a few drops of milk in those pumping sessions, but she always painstakingly saved them, and never stopped trying.

A couple of days before Christmas, I caught a cold. It meant I couldn’t go see Mira, who was nearing one month old. I stayed home. I pumped. On Christmas Eve, Amol came home from the NICU looking gray. The baby boy next to Mira had died.

I never saw that woman again, but I think about her every day. I picture her in the pumping room, never giving up, saving the drops. I say her son’s name to myself. I try to remember him well, his tiny form behind clear plastic, his parents sitting next to him.

The doctors never said Mira would be okay; they simply told us the news of the day, which, because we were lucky, was almost always cautiously optimistic: She was stable; she was growing. This narrowness of information was by design. Our favorite nurse told me later that the staff are careful never to say a baby is out of the woods until they are being carried out the door because babies have passed away days before discharge, struck by aliments like RSV, a common respiratory virus. So I hadn’t even allowed myself to think of the possibility that Mira could ever come home when I got to the NICU one morning and found a flyer taped to her pod, instructing me that Amol and I would both need to take an infant CPR class before discharge. There we learned how to do chest compressions on little rubber dolls and all about SIDS (sudden infant death syndrome), which premature babies suffer from more than term babies. (Which seems like insult upon injury.)

The hurdles to cross before she could come home were routine for a baby her size, and yet seemed insurmountable. She needed to be at least four pounds, more than double her birth weight. She needed to be able to maintain her own body temperature and eat on her own. She needed to be able to breathe by herself without desaturating or pausing in an apnea. And her heart needed to keep beating on its own, without help.

These episodes, called bradys for short, still plagued her several times a day. Amol and I would call the NICU right before bed and first thing in the morning to find out if she had gained any weight and if she had had any bradys. The episodes could be triggered by stress or exertion. If she had a lot of episodes in a day, there was worry that it presaged something more serious—an infection, say, which thankfully never happened, or a need for a blood transfusion, since her bone marrow wasn’t producing enough red blood cells, which did happen (another totally normal development). They could even be triggered by getting too comfortable, as when she was snuggled against my chest during kangaroo care.

One afternoon when Mira was about a month and a half old, we had a young nurse named Sarah. I liked her but—in my hyper-judgmental state—I thought she seemed more like a twenty-something you’d see at an annoying midtown bar than someone you’d want holding your baby’s life in her hands. It was an unfair thought, but that’s where I was. That day I was holding Mira when her heart rate started to plummet and the alarm pinged, first softly then more insistently. Sarah came over, observed the customary pause to see if Mira could figure this out on her own, and then started rubbing her back. Usually a rub, a pat, did the trick. This time her heart rate continued to fall. Sarah picked up Mira, who was totally limp, not breathing, and placed her on her back in the open incubator. She rubbed her chest more vigorously. Nothing. All the numbers on the monitor were falling, blinking, beeping. Mira’s skin had turned gray, a color I have seen only once before, when my mother died. With one hand Sarah grabbed a nasal aspirator bulb and, with the other, reached for the ventilator bag that hung by every bedside, in case of an emergency need to breathe for the infant, or “bag” them. But first she stuck the nasal bulb up one tiny nostril and used it to suck out some snot. And just like that, Mira took a big breath, jerked. The numbers climbed; her skin pinkened. Sarah and I looked at each other and let out our own shuddering breaths.

As Mira’s due date approached, she started to seem more like a baby. First, she got to wear clothes—a preemie-sized onesie that hung off her. After about six weeks on CPAP, she graduated to a nasal cannula that delivered oxygen, and then nothing at all. At around 33 weeks’ gestational age, an occupational therapist taught us how to bottle-feed her, very slowly to avoid overwhelming her, which would inevitably lead to her forgetting to breathe and having an episode. After a few weeks of that, they took her feeding tube out. For the first time, nearly two months after her birth, we saw her face clearly, freed of the tubes and tape. One morning Amol and I came in and found her awake, her huge gray eyes looking around, as though she had just arrived—which, in a way, she had.

Finally, she hit four pounds. Now we were waiting for the bradys to go away. The policy was that she had to be episode-free for three days to go home, and if she had one, the clock was reset. She had gone two episode-free days when she had another one, while drinking a bottle. The attending neonatologist decided that, since the brady happened only because she got overwhelmed while eating, it didn’t count. Presumably if her heart stopped while we were feeding her at home, we’d notice, as opposed to if it happened while she was sleeping, when we might not. I did not find this reassuring. I wanted to take her home, but I was terrified to take her home.

The next day, January 27, fifty-nine days after her birth and twenty days before her due date, Mira was unhooked for the first time from the monitor that tracked her heart rate, respiratory rate, and blood oxygenation, and we were told we could go home. It felt radical, like free-fall. It had snowed the day before, and I sat in the back seat with her, barely breathing myself, as Amol drove slowly down the icy FDR Drive to the Brooklyn–Battery Tunnel, all of us retracing our steps for the first time together since the Sunday morning in November when she was born.

OUR STORY IS like a kaleidoscope of lucky versus unlucky: The pattern shifts depending on how you look at it. We had excellent prenatal care; if we hadn’t had that extra monitoring, Mira would likely have been stillborn. Only about 1.6 percent of babies are born before 32 weeks; only about 0.5 percent are born weighing less than 1,000 grams. We had made it four weeks past what anyone would consider the viability line. But being IUGR increased her risk of death or disability to the equivalent of babies born two to three weeks earlier, 25 or 26 weeks. She was born in a hospital with a level four NICU, the best. Ours was one of the many preterm births for which there was no answer as to why the problem happened—no risk factors, no health problems, no reason.

The incredible truth is that, from a medical point of view though not from a parental point of view, Mira’s NICU course was unremarkable, at least once she was stabilized and started to gain weight. As recently as the 1970s, she might have been simply allowed to die in the delivery room, since she was under 1,000 grams. But in the context of today’s high-resource NICUs, Mira was relatively unremarkable. She was your average one-and-a-half-pound baby whose heart stopped several times a day, who needed blood transfusions to stay alive, who needed life support to breathe, eat, and stay warm.

When Mira was born, I felt uniquely bad at gestation, when I was actually one of almost a half million mothers who would give birth early in the United States that year. I didn’t know that our family’s private gauntlet was a small part of a worldwide public health emergency.

For most of human history, gestation was a solo affair, and it either resulted in a living baby and surviving mother or, lots of times, it didn’t. Left to nature, most preterm babies die. In today’s NICUs, most of them survive.

Throughout the middle and latter half of the twentieth century, extraordinarily headstrong doctors and scientists were willing to risk their reputations to argue that something more could and should be done for the tiniest babies. As a result, in two generations, we’ve gone from having essentially no treatment for premature babies to flirting with viability just past the midpoint of pregnancy.

It’s changed the way we think about babies and our obligations to them. It’s changed the ways we understand what it means to be alive, what it means to be human, and what constitutes a life worth living. At least for the moment, it messily defines abortion law in the United States, since “viability” is determined by neonatology’s success. (As I write this, several states have passed clearly unconstitutional laws that essentially outlaw abortion, with the goal of getting the Supreme Court to reconsider and potentially overturn Roe v. Wade, which established the right to an abortion up to viability.) Premature birth—and which groups suffer from it the most—reflects back all the deep racial and economic injustices that plague the United States.

And sometimes, the project of treating premature babies reflects what is best and most beautiful in all of us: that we will go so far for a single human life; that some people dedicate their lives to the children of others; that love of all kinds can burn so bright.

Amol likes to think of Mira having a superhero origin story: She battled the machines and lived. Now she carries hidden power. I sometimes think of it as a fairy tale—the old, dark kind—a girl who had to find her way through a dark wood full of sharp teeth, alone and brave before her time. I think we are both trying to describe how her birth and her struggle feel fundamental: at the intersections of birth and loss, science and humanity.

Part I

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