An Intimate History of Premature Birth

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.)