An Intimate History of Premature Birth

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.