An Intimate History of Premature Birth. Sarah DiGregorio
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.
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