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
