People | Health | Bodies

A History of Premature Births, Including My Own

Dr. Couney settled in the United States in 1903, when he began exhibiting incubator babies on Coney Island every summer. “Infant Incubators With Living Babies,” the sign above the building read.

I.

My middle school science class went to see a traveling exhibit of human corpses. The corpses were scientifically preserved, stripped free of skin, and displayed in lifelike poses, such as dribbling a basketball or throwing a dart. This exhibit, known as Body Worlds, was located in the Mall of America in Minnesota, between the Bubba Gump Shrimp and the Hooter’s. My preteen male classmates were delighted by this and found it hilarious to ask the teachers if we could eat lunch at the Hooter’s. As it turns out, the boys had nothing to worry about—there was no shortage of naked breasts in the exhibit, so long as they didn’t mind that the breasts were devoid of skin, blood, and an accompanying heartbeat.

I chose to move through the exhibit alone, the corpses like gruesome mannequins around me. The blood vessels of one human were laid out like strands of rubies. There was a brain sliced thinly and placed between slides of glass. I came to a cordoned-off area of the exhibit that had a disclaimer:

Attention. Viewer Discretion Advised. The human embryos and fetuses in this exhibit are real. The survival of these embryos and fetuses was prevented by natural causes or accidents. These specimens were collected from medical universities and hospitals and prepared by Dr. Hunther von Hagens, inventor of the plastination process and creator of the Body Worlds exhibitions.

The fetuses and embryos were everywhere and indeed real. The smallest display held a suspended toad-sized being with completely transparent skin, through which I could see blood vessels as thin as strands of hair. The transparent-skinned beings increased in size from glass box to glass box, those eternal and futile Isolettes.

A classmate had entered the exhibit behind me, and stated loudly that these were aborted babies. I was too enraptured to correct her.

The larger babies were grotesque and had the beige-yellow waxen tinge of the truly embalmed. One had been born with its heart outside its body; another’s skull simply had a large divot where its brain should have been. Some of the older babies had full heads of dark hair. I did not linger long in this room.

II.

In 1920, when a baby was born under two pounds, the mother would be told, “Go home,” as in, appreciate the brief span of this life outside the walls of this hospital. How early the baby had been born was usually read as an augur for how to proceed. Sometimes, the baby would be born in the hospital, cleaned, dressed, and be carried outside to feel the sun on its skin or see the stars for the first and only time.

“The hospital didn’t have any hope for me at all. It was just, ‘you die because you didn’t belong in the world,’” says Lucille Horn in an interview with NPR. When Lucille Horn was born in New York City in 1920, she weighed just two pounds. According to Lucille’s family lore, her father suddenly remembered visiting Coney Island, and an exhibit he had seen there. He wrapped her in a blanket and hailed a taxi cab to Coney Island. He had heard about the babies held there under the care of Dr. Couney.

Dr. Martin Couney believed that putting premature babies in incubators, a fairly new technology first presented at the World Exhibition in Berlin in 1896, was a crucial way of keeping these tiny infants alive. None of the babies exhibited in Berlin died, Dr. Couney pointed out, despite having little chance of survival at birth. Few of them weighed more than three pounds.

Critics of Dr. Couney believed that while incubating babies was a viable form of preserving life outside the womb, putting the babies on display to the public was in fact an unethical way of making money. However, incubation is expensive—one reason why hospitals were hesitant to incorporate incubators into their practice—and the money collected from the public allowed Dr. Couney to keep the infants alive and healthy without any cost to the parents.

The Berlin exhibition was so popular, it was repeated in London. British doctors didn’t trust Dr. Couney enough to put their own infant patients in the incubators, so Dr. Couney brought “three baskets” of babies from Paris. As many as 3,600 people per day came to view the tiny babies, who thrived under heaters, breathing filtered oxygen in their glass boxes.

The exhibit moved on to other cities; Buffalo, Chicago, St. Louis. After so much traveling, Dr. Couney settled in the United States in 1903, when he began exhibiting incubator babies on Coney Island every summer. “Infant Incubators With Living Babies,” the sign above the building read, and the line of visitors stretched out the door, mingling with the lines for bearded ladies and sword swallowers. “It cost a quarter to see the babies, and people came again and again, to coo and to gasp and say look how small, look how small,” writes Michael Brick in a 2005 New York Times article on the sideshow. “At least 8,000 babies passed through the incubators, and the doctor was credited with saving at least 6,500, according to news reports of the time.” Those 6,500 babies had been turned away from New York hospitals, who were told they had no chance for their size. Dr. Couney was inducted into the Coney Island Hall of Fame in 2005, fifty-five years after his death. Lucille Horn grew up to work as a crossing guard and a legal secretary, and herself had five children. She passed away at the age of ninety-six—a good deal longer than the few days’ life expectancy she was given as a two-pound infant.

III.

My mother was, at the time, a professor of speech-language pathology at the University of Wisconsin-Eau Claire. It was early July, 1997. The college kids who were on summer break, free of classes, stood on the side of the road in bikinis and swim trunks, their bare feet shifting on the hot asphalt. They would hoist inner tubes out of the trunks of their cars and down to the river, where they let the current carry them towards Wausau, laughing and drinking silver cans of beer, and the students who were not on break were in class, in the air-conditioned cinderblock building of the Communication Disorders and Sciences building, and my mom had been auditing one such class, dysphagia, and somewhere in the discussion of swallowing, she went to the bathroom, realized the warm wet between her legs is her water breaking, but slowly, like a babbling tributary. She left the class and went to her doctor—it is July, her due date is November 22nd, she is going to lose the baby—the hospital called the auto shop where her husband works, relayed the doctor’s estimate of a 2% chance at survival.

The auto shop didn’t tell my dad at first what was going on; it took an hour for them to tell him that he may lose his daughter. “I guess they felt that I needed to be handled,” he says.

He finally sees my mom in the hospital—and this moment wrapped in the fragility of time belongs only to my parents, I cannot extract it from either of them—then drives home to gather some belongings and food, only to find that their cat, Bill, is dead. Bill was a vicious kind of cat; he didn’t like to be pet, and he swatted a hole through the wood of my dad’s guitar. But my parents loved him, and now he was dead.

My dad buries the cat in the backyard. Gathers the necessities, the food.

IV.

There is not much record of how premature babies survived before the technology of modern medicine. Mostly, presumably, they died; one medieval document depicts a French woman who gave birth to “an object” smaller than the midwife’s hand, “the object” survived just long enough to be baptized.

Eventually, as the hospital in Eau Claire realized the amniotic fluid was not replenishing, they began to discuss transferring my mother to the Mayo Clinic in Minnesota, so that if Alexandra did decide to emerge within the coming weeks, she might stand a fleeting chance through the use of a plethora of wires and machines.

They considered, at first, airlifting the two of us, but decided to take the chance by making the two-hour drive in a Gold Cross ambulance to Rochester, Minnesota. “They didn’t even turn the sirens on,” my mom remembers. “I was kind of disappointed.”

My dad believes this was an extremely risky decision. The back of an ambulance is, despite its intentions, notoriously unstable, especially for a two-hour drive. “Every bump she went over, more fluid leaked out.”

In the hospital, they elevated her legs first. It seems so basic to consider the gravity.

The Wikipedia page on the Trendelenburg position shows some kind of doctor standing on a stool with the patient, a naked adult man, flung over the doctor’s shoulders and being held by his ankles like a child throwing a temper tantrum. The man’s torso rests on an elevated bed, all the blood rushing to his head. Neither man looks particularly comfortable. It is simply captioned, “Old depiction of the Trendelenburg position.”

In this odd position, my mother learned how to play chess, watched old movies, and crocheted squares of pastel yarn. The Mayo Clinic placed her on complete Trendelenburg-position bedrest; some patients are able to get up to use the bathroom, but she was required to use a bedpan. She journaled extensively, notes to herself, poems, and most frequently, letters to baby Alexandra. In the beginning, inspiration not yet lost to the chaos of intensive care, she communicates in rhyming poetry, in a classic ’90s, plastic-spiral-bound notebook donated by the hospital with a cover that reads “Special Care Pregnancy—Waiting . . . ” On the first page she writes a poem pleading her cervix to cooperate. “Time on our hands / every day that goes by, time on our side.” The next page is a list of movies to watch that includes, puzzlingly, Where the Red Fern Grows and Schindler’s List. My father sleeps on a cot next to the bed.

V.

In Ellen Galinsky’s 1976 book Beginnings, wherein she writes about her experiences with two premature births, she asks her husband for a glass of Scotch when she feels contractions at only four months, saying she knew that liquor could hinder contractions, “having once overheard an obstetrician tell someone else that he had given a woman intravenous alcohol and it had stopped her premature labor.” She quickly drinks the “full glass” of Scotch her husband brings her and remarks, “it was medicine.”

Indeed, it was common, even prescribed, for pregnant women to drink alcohol in the nineteenth and twentieth centuries. According to Annie Murphy Paul in her book Origins: How the Nine Months Before Birth Shape the Rest of Our Lives, “Well into the twentieth century, alcohol was viewed as an all-purpose remedy that soothed pregnant women’s nerves and fortified them for the rigors of labor. It was believed that alcohol would relax the uterus following amniocentesis, and even arrest labor that had begun prematurely. (This theory was championed by a Cornell University scientist who used it on his own wife when she began having contractions at seven months.)” It was not until 1973 that fetal alcohol syndrome was written about by medical professionals and named, and not until 1989 that alcoholic beverages were labeled with warnings directed at pregnant women. Modern research on the effects of moderate drinking during pregnancy is inconclusive—Annie Murphy Paul writes that “the research veers one way, then the other; a reader venturing into this literature is viable to get whiplash.” If my mother had experienced preterm labor twenty or thirty years earlier, she may have been relaxing in the Trendelenburg position with one of her favorite craft beers—this was Wisconsin, after all, where it’s “too cold to be sober,” and minors are allowed to legally drink at home if under supervision of their parents. But, alas.

VI.

On August 19th my mother feels an unexpected rush of hope, citing mother love, hearing stories with happy endings, crochet squares, and baffled doctors as possible sources of the unexpected surge of everything will be okay. It is her own mother’s birthday, and her sister has just gotten married.

All night on August 20th, into the morning of August 21st, my mother weathered contractions while pitocin, a synthetic form of the labor-inducing hormone oxytocin, coursed through her veins. The amniotic fluid had been steadily leaking for over a month, the dregs of which measured in on the ultrasound at four centimeters, about ten centimeters too low for this point in pregnancy. The pitocin to induce labor was also inducing a not insignificant amount of anxiety.

“The emotional pressure . . . I just felt like everyone was counting on me to hold you inside me and keep you safe,” my mother says. “That night was the only time I felt, for a moment, that I might die.”

The labor occurs at four in the morning. It is not a long ordeal. Alexandra is born on the second push. She weighs one pound, thirteen ounces, and is thirteen inches long.

“Well, you came out, you were really brown, and you looked like a bullet,” my dad describes. I am crouched on the floor of a media room in the library, on a Saturday morning, talking to him on the phone and recording it on my laptop for posterity. I can picture him sitting in his office in front of his two computer monitors, his long grey hair gathered at the nape of his neck, the large whiteboard on the wall of his office scrawled with dry-erase coding terms I can’t understand. “You passed through the breach like a shell into the world. Then they rushed you off to resuscitate you.”

“I thought you were dead. I thought mom was dead.”

VII.

Some hours after I was born, someone, a nurse or my father, probably, snapped a picture of this small person with a Polaroid camera, one isolated square. This creature, whom I am meant to understand as myself, lies in the incubator, arms curled, fetal, eyes glued shut, looking for all the world like a baby mouse. In the birth announcement, my mom does admit Alexandra has a cone head. My soft skull molded by her body like clay. A skull only a mother could love.

Five days after Alexandra is born, my mother writes that three-page birth announcement detailing the experience in alternating medical jargon (in the draft, she nearly includes the Apgar score—the score that essentially assesses the likelihood of survival among newborns, but crosses it out, omitting it), attempts at cute humor, (“PROM stands for premature rupture of the membranes,” she wrote, “not the fun kind you go to with a date”) and yes—more rhyming poetry. She tells me that about a year afterward, she felt embarrassed about sending out such a long, detailed birth announcement. It makes sense why she explained it all in such detail; it was the only way anyone on the outside could understand.

In my conscious memory I have never chosen to be called Alexandra. Alexandra is that wiggling sea creature tethered in tubes. Alexandra is the idea of a person who survives.

VIII.

As more premature babies survive into adulthood, with or often without complications, we are introduced to more miracles, more heartwarming stories, such as the NICU nurse in Stanford, California, Vilma Wong, who discovered that one of the new medical residents who had just joined her team was the same baby she had cared for in the NICU thirty years before, returning to work in the hospital where he was born.

One of the most recently documented “micro preemies” is Juniper French, the daughter of two Tampa Bay Times journalists, who was born in 2011 at twenty-three weeks and six days gestation. In 2011, viability—the time frame when babies are just barely developed enough to survive—was considered to be twenty-four weeks. Juniper was born during what they called “the gray zone.”

Her parents being journalists, Juniper’s story was chronicled in the Tampa Bay Times, in an hour-long episode of Radiolab from WNYC studios, and in a short film for National Geographic. In video updates provided by her parents, Juniper is now a healthy child with dark hair who wears tutus and plays with her dog.

But when she was born, her mother Kelley could see her organs through her skin. The NICU nurses taught Juniper’s parents how to touch her through the incubator, never to rub because her skin would actually tear and come off. She suffered a hole in her intestine two separate times, the surgeons apprehensive about operating because they weren’t sure they would be able to stitch or make incisions without her skin, her very body, falling apart.

In the Radiolab episode, her parents, especially her father Tom, spoke of some mysterious will to live that they could see in Juniper. In one particularly difficult moment, her vitals crashing as doctors work around her tiny body, she suddenly opens her eyes for the first time. When Tom touches her for the first time, he puts his finger in her outstretched palm—and she grabs on.

Doctors, however, don’t always see this mystical resolve to live that parents see. “I maybe try to keep things a little bit more neutral than talking about their will to live. A baby born at twenty-four weeks barely has folds on the outside of its brain. The brain is still smooth . . . The baby grasping the finger of a parent is actually a reflex that the babies have, a grasp reflex,” admits a registered nurse in the Radiolab episode. “But I’d never tell a parent that, because they think it’s an intentional movement.”

Parents inevitably have a distorted view of their child’s experience, as their own love and yearning for a child clouds their perception of reality. In his essay on his ten-month-old son’s death from cancer, journalist Jim Cavan writes about watching a video of his late son. “Watching that video now, seeing his hollow eyes feign fleeting joy, I marvel at how wholeheartedly we felt he had a chance, how easily our minds turned curses to runes and glaring fact into fodder for the impossible.” In turn, Juniper French’s parents are worried they are being selfish, that they want a baby so badly that it is cruel to her to keep her alive, in this box, her skin too fragile to be touched.

Anna Taddio, a pain specialist at the Hospital for Sick Children in Toronto, has concluded that painful events even in very early months can affect children for much longer than anticipated. “Lasting effects might include emotional and behavioral problems like anxiety and depression, even learning disabilities, though these findings are much more tentative. Some doctors who treat premature babies have begun to incorporate such findings into their practice, reducing the number of heel pricks to which the infants are subject, for example, and making their environments quieter, dimmer, and more womblike,” Annie Murphy Paul writes of Taddio’s findings. I have wondered about the psychological effects of my birth and hospitalization. In life we retain psychological characteristics of infancy—the fetal position is instinctual and remains comforting even to adults. Is it possible I could have some kind of hospital-related infant PTSD? I don’t remember being afraid of needles in my childhood, and as chronic illness became the norm for me as a teenager, needle pricks felt part of the banality of medical treatment, just another thing to get through.

In one procedure that is normal for an American teenager, I got my wisdom teeth removed when I was sixteen. The very feeling of the anesthesia flowing into me through a nasal cannula, uncontrollable, not of my own volition, made me uncomfortable and anxious. “I can’t breathe it in,” I said to the dentists and assistants as they readied the tools around me. “Just try,” someone said, irritated. I went unconscious while they played a movie about a train speeding out of control. “Stop screaming,” I heard while waking up, trying to surface from beneath a black fog. I stopped, unaware I had ever started. “We’ve been trying to wake you up for an hour,” an assistant said, when finally I came to. She was being hyperbolic, I think with the time frame and hopefully also the screaming, but I immediately felt horrible for being a burden. Later, I realized I hadn’t felt the sensation of a nasal cannula since infancy.

IX.

My parents moved into Rochester’s Ronald McDonald House within a week after I was born, and lived there with other parents whose lives had been thrown into chaos. Twice a day my parents walked to the NICU, my mother’s legs still recovering from the atrophy of bedrest, to watch Alexandra do what tiny babies do; hiccup or poop or pull tubes off of herself; they watched and monitored episodes of apnea and bradycardia, oxygen desaturation and CPAP ranges, monitored signs of retinopathy of prematurity or bronchopulmonary dysplasia, and, on blessed and ever-too sparse occasions, they were allowed to lift the creature out of the box. They held her tube-tethered body to their chests in a practice known as “kangaroo care.”

Sometimes, my mom would write with a slanted, quick pen, venting about how the nurse had to put Alexandra back in the incubator before the hour in which she was permitted to hold her had fully passed, saying that the baby was too stressed, or the times that my mother arrived in the NICU only to be told that Alexandra was too fragile to be held today; to come back tomorrow. One entry bursts with joy as she is able to hold Alexandra for the first time in fourteen days. She writes that seeing Alexandra makes her feel “happy & needed & loved.”

X.

Although the babies are all together, the NICU is fairly solitary; as other people’s tragedies unfold around you, you don’t want to get too involved, and then there is the infection risk. You watch from the sidelines as other families’ lives implode; as babies don’t make it, as couples split up from the pressure. Amidst the technological boom of the ’90s, my mother feels sometimes upset at the technology that engulfs her life for those one hundred days after my birth — one journal entry reads, “I wish your dad and you and I could just go live off the land.” Later in the week, Princess Diana dies in a car crash; it is all the hospital televisions play for what seems like ages.

XI.

Fragility lasts. My dad in particular was wary of the risk of infection. My parents were adamant about getting all of my immunizations on time, and in my mother’s journals a fight is documented in November regarding her parents visiting: My dad had previously told his own parents that they wouldn’t be able to visit in January, that it was still too early to introduce me to foreign germs. I remember specifically his apprehension about a playground that existed in the center of Eau Claire’s mall, a series of rubbery-plasticky playthings where children could climb on a huge dragonfly. He didn’t like to see me being a typically gross toddler on that thing with all the other gross toddlers. Later, the playground was sponsored by a local hospital and remodeled into a village of woodland animals, complete with a little woodland animal ambulance, a little woodland animal helicopter.

My dad notes that some families who came into the NICU were not families when they left it, the parents having separated under the immense stress. Sometimes, when reading these journals, I become more convinced that Alexandra was the main reason my parents stayed together for the next sixteen years, that they became bonded inseparably in the terror of the intensive care unit and that the further we moved away from that, the more the bond between the two of them faded until it was gone. My parents divorced when I was in high school, citing an inability to work as a team.

*

As the number of premature babies who survive and thrive into adulthood increases with every advantageous medical discovery, hope and gratitude overwhelm me. I’m graduating from college in a month; twenty-one years ago, my parents were just hoping I could graduate from Mayo’s NICU and be transferred to the smaller hospital. It’s difficult, sometimes, to admit my own resilience.

The bike path in Eau Claire that runs adjacent to the river and past the hospital has a helicopter landing area where you must stop, and while biking around with my friends or my mom, we would always stop, physically aware that the series of Mayo-associated medical centers dictated how and whether we existed throughout the city. Every time we scraped the rubber soles of our shoes on the asphalt, halting our bikes and feeling the helicopter blades whip the humid air in all directions, I know that we stopped out of obligation, but I like to think that a not insignificant part of us looked forward to that stop, to watch the helicopter prepare for an airlift, our bodies motionless with awe.

As a young adult, I carry my precarious beginnings with me everywhere I go, a fragmented backstory, a bonus track. My arms and legs are dotted with little pitted scars from the IVs; I’m chronically anemic; when I undress with a lover I wonder if she can see the arc of the G-tube scar across my abdomen. Once, when my roommate worked at the post office, she slapped a sticker on my hand that read “RECEIVED IN DAMAGED CONDITION.” I laughed. I took a college class on memoir where I learned the phrase “non-normative body.” My body is non-normative, and I live in it nonetheless.