An Intimate History of Premature Birth. Sarah DiGregorio
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,