a premature birth . . . a little over six months.
—SIDESHOW BARKER, “Infant Incubator Babies” exhibit, early 1900s, Luna Park, Coney Island
The history of the treatment of premature infants is one of the most abhorrent chapters in the annals of medicine. Up until the 1880s premature infants fended for themselves with no help from medical science. Unsurprisingly, their mortality rates were catastrophic—sixty-six percent and perhaps even higher. Doctors played virtually no role. Birth and care were the exclusive domain of mother and midwives.
In the early 1800s, spurred by a belief that mankind had become too weak, a popular attitude prevailed that newborns should be subjected to cold baths and cold air to make them tough and resilient. It was idiocy, but much of medicine at that time reflected the philosophies and superstitions of the era. The studies and writings of eminent Philadelphia obstetrician William Dewees beginning in the early 1800s helped to dispel this absurd ignorance. “This preposterous and cruel system of hardening . . . is in fact nothing else than an experiment to see how much an infant can bear without being injured or destroyed.”
Still, medical treatments of that period often did far more harm than good. Babies born prematurely and unable to breathe on their own might be treated with a whipping to jar their organs into function, or a few drops of brandy, or an onion held under the nose. The first glimmer of hope for premature babies came in 1880, when French doctor Stéphane Tarnier invented a closed incubator that could keep an infant consistently warm, a crucial element for survival. The invention had its roots in the poultry industry; Tarnier had seen a simplified version of the machine used for the hatching of chicken eggs at an exhibition in Paris.
Tarnier’s invention was not particularly sophisticated, basically an enclosed basket with water bottles at the bottom. But it made a discernible difference in lowering mortality. Other doctors made subsequent improvements to its design that helped stop premature birth from becoming a death sentence. But they couldn’t prevent these tiny infants from becoming a sideshow for a public always in love with what they considered to be deformed freaks.
At the Chicago World’s Fair in 1933–34, a clump of exhibits bordered the east end of the area known as the South Lagoon. A visitor could marvel at the installation from the American Radiator and Standard Sanitary Corporation with displays of plumbing, heating, and air conditioning tastefully housed in a Spanish garden with cascades, pools, shrubbery, and statuary. Nearby was the Sinclair monsters exhibit, where a forty-ton brontosaurus swung its neck, jerked its tail, and emitted a screeching grunt. It was impossible to ignore the adjacent 227-foot Havoline Thermometer, the world’s tallest. A little farther east stood the Foreign Villages, what the fair guidebook described as the “quaint midget village.” Resembling the Bavarian walled city of Dinkelsbühl, it contained 115 “midget inhabitants,” including what was believed to be the smallest man in the world, Werner Krueger, at twenty-four inches and eighteen pounds. There were shops featuring “midget handicrafts as well as a miniature taxicab, filling station and newspaper.” But in deference to its customers the “midget restaurant” did serve full-size meals.
Almost directly opposite Midget Village was the popular Ripley’s Believe-It-or-Not Odditorium. It featured fifteen-month-old Betty Williams, born with four legs and three arms. She was counterbalanced by Frieda Pushnik, the so-called “little half girl” with no arms or legs. Lydia McPherson had the longest red hair in the world, extending roughly seven feet. Harry and Lillian McGregor had spent a lifetime learning how to lift weights with their eyelids. E. L. Blystone had legibly written 2,871 letters on a grain of rice. Leo Kongee, dubbed the “human pincushion,” hammered nails into his cheeks, forehead, and scalp without drawing blood.
The “Infant Incubators with Living Babies” exhibit blended perfectly. It contained roughly thirty premature infants, some weighing as little as one and a half pounds. The exhibit staff included a full-time physician and a bevy of nurses and wet nurses. It was a de facto neonatology unit, and some in the medical profession argued that such public exposure would only help to advance care for premature infants. But others decried these exhibitions. As the British medical journal Lancet lamented in 1897, “What connection is there between this serious matter of saving human life and the bearded women, the dog-faced man, the elephants, the performing horses and pigs, and the clowns and the acrobats? . . .” Rhetorical questions like these went unanswered as crowds flocked to view the preemies, hustler subterfuge in the supposed name of science.
Thousands of gawkers, each paying twenty-five cents, passed through the portals to see what were considered to be otherworldly creatures. Many of the customers were so-called “repeaters,” almost all of them childless women, who came as often as they could to follow the progress of a baby they were rooting for, much like backing an up-and-coming thoroughbred. The Incubator Babies exhibit was one of a long line of such spectacles that stretched from Berlin in 1896 until Coney Island in 1943. One of the barkers at an exhibit was a struggling actor named Archibald Leach. “Don’t pass the babies by!” Leach implored prospective customers until he landed a part in a Broadway play and changed his name to Cary Grant.
In the first half of the twentieth century, incubator babies, in addition to international expositions, were exhibited at circuses like Barnum & Bailey’s and resorts like Atlantic City.
Fundamental notions of hygiene were ignored in the name of enhancing the spectacle. In the early 1900s, some of the exhibits didn’t even have a glass partition to separate spectators from the babies, subjecting them to coughs, colds, sneezing, and smoking. At the Louisiana Purchase Exposition in 1904, an epidemic of diarrhea ran through the preemie exhibit and half the infants there died. Electricity was shut off at night throughout the exhibition, making it impossible to give the infants the constant warmth they needed.
The patron saint of the preemie freak show was Martin Couney, a doctor from Alsace who had trained under one of the world’s best pediatricians before settling in America and running the Coney Island preemie exhibit. Couney’s dedication to the premature infants was equaled by his profit motive. He also liked the high life. In a 1939 profile in The New Yorker, A. J. Liebling detailed his various sartorial flourishes: spats, a derby, a crook-handled cane. He liked his rabbit garlicky and rare, and he spent most of his time in a house overlooking the ocean that was both overheated and comfortable, the environment of warmth “exactly like a preemie” incubator, as only Liebling could observe.
Couney dubbed the incubator a “peanut roaster,” and he got letters from all over the world from parents begging him to roast their peanuts because caring for them at home was physically and psychologically draining. Once these babies grew to a normal size in his incubators, Couney hastened to reunite them with their parents, not out of kindness but because he needed to make room for more preemies. After all, who would travel to Coney Island to see a six-pound baby? He knew that any freak show exhibit needed a little bit of sleight of hand to heighten the drama. Babies were dressed in clothing that made them look smaller than they actually were. Couney’s chief aide, the mysteriously named Madame Recht, wore an oversize diamond ring so she could slip it around a baby’s tiny wrist.
In addition to the permanent show at Coney Island, Couney exhibited at the 1939–40 World’s Fair in New York. But the fair exhibit was a financial bust: premature babies were old hat by then. The Coney Island exhibit closed in 1943, the same year that New York Hospital established its own facility to care for premature infants. “I made propaganda for the preemie. My work is done,” said Couney. He also made nice money.
Moving premature babies into the medical mainstream did not appreciably improve their lot. Too often, otherwise reputable doctors touted miraculous remedies that ultimately proved worthless if not dangerous. The New York Times proclaimed the promise of Epsom salts enemas, which were said to reduce deadly respiratory distress syndrome by achieving the proper level of body water. Later, it was
discovered that such enemas caused fatal magnesium toxicity. A machine called the Bloxsom Air Lock was supposed to simulate uterine contractions. It was ballyhooed by Newsweek, became popular around the country, and then was abandoned because it did not remotely work.
Most catastrophic of all was the use of supplemental oxygen. In 1942 J. Robert Wilson, the chairman of pediatrics at the University of Michigan, discovered that premature infants breathed more regularly in an environment that contained seventy percent oxygen. Wilson himself noted there was no proof that regular breathing was any better for preemies than periodic breathing. Still, the change to higher oxygen concentrations spread widely, until it was discovered in 1951 that the high doses of oxygen were causing blindness in thousands of premature infants. Physicians immediately shifted to an oxygen concentration of forty percent, roughly double the amount of oxygen in the atmosphere. The decrease lowered the incidence of blindness but led to increased mortality rates from cerebral palsy and a condition known as hyaline membrane disease. In the neonatal game of Pin the Tail on the Donkey, this wasn’t close to the right solution either. It was only in the early sixties that practical safeguards were put in place to measure the correct level of oxygen, such as blood gas and saturation monitors and oxygen sensors.
President Kennedy and his wife, Jackie, had the greatest modern impact on the development of the treatment of premature infants into a medical subspecialty. The death of the Kennedys’ four-pound, eleven-ounce son, Patrick Bouvier, from respiratory failure increased public awareness of the plight of premature infants. Use of ventilators became far more commonplace. Neonatology was established as a medical specialty requiring specialized training and certification in 1966. By 1983, the year Zach and Gerry were born, over 1,500 physicians were practicing neonatology in the United States, and neonatal nurse practitioners had to be certified.
Zach and Gerry were lucky to have been born at a place like Pennsylvania Hospital that had superb neonatal care. But as I watched them day after day in 1983, I had this sense that we all wore blinders, the number of advances still outweighed by the number of unknowns. I remember when the head of the unit told Debra and me that they were going to try a regimen of steroids on Zach. I remember especially well the way he said it, with a frustrated shrug of his shoulders, because neither he nor the other doctors really knew what to do to get Zach to gain weight and breathe on his own. A study later showed that certain steroids could lead to diminished brain growth and cerebral palsy. We approved the steroid treatment enthusiastically. We didn’t know the possible ramifications and, like the doctor, we were desperate for progress. We applauded every effort.
In 1990 doctors finally introduced a drug that rivaled the invention of the incubator 110 years earlier in its dramatic effect on preemies. Most infants produce a substance called surfactant that is essential to expanding their lungs so they can breathe properly. But very small infants like Zach lacked sufficient surfactant. Giving preemies an artificial version of the substance produced stunning results. Had it been available for Zach, his life would have been radically different. So would mine and Debra’s.
IV
Debra and I were in the shower one night when the song “Every Breath You Take” started playing on the radio. The daily ritual of seeing Zach in the hospital, watching for hours as he struggled to take his own breaths, had beaten us down despite our outward stoicism. Debra sobbed in my arms. It was one of the most intimate moments of our short marriage. Yet at that moment I felt a shift. It was ever so subtle, like the touch of a spare summer breeze. Her arms around me loosened slightly; my arms around her felt out of place, suddenly as useless as flippers. The hot, soothing water was the only mercy I felt. It was only that tiny release of pressure from around my waist, but she was beginning to let go. I believe now she was suggesting that the negative narcissism and the constant fear of failure, the first cousins of the unquenchable neediness that was embedded within me, could no longer be given out in limitless supply.
We have a son who may live or die. We have another son who may have problems as well despite his progress. I don’t have time anymore to reassure you about your career. I don’t care about your career. I don’t have time to reassure you about anything.
I loved every inch of my boys. I worried twenty-four hours a day about them. I cried when I saw Zach in the hospital with those milky brown eyes struggling to stay open, the silent message of I’m fighting as hard as I can.
But I lived inside my head and I could not get outside. Work and the pursuit of success formed my only true identity. I was terrified of what I would be without it. Now I was scared about everything—my career, my children, my notion of fatherhood that had been obliterated. I had always been scared. My self-confidence was a come-on. I hid my insecurity and fear behind a barrage of angry outbursts at editors and friends and wives and waiters. I was tender and kind on many occasions, but then darkness prevailed. Success had been the only constant in my life. It was an addiction. My drug. Until like all drugs it wore off suddenly, and I needed some more.
The birth of the twins only multiplied my sense of inadequacy and yearning for success. We knew they would be premature, but still I fantasized that they would be buoyant, healthy babies handed over to Mom and Dad in soft blue blankets. I wanted congratulations instead of condolences. I wanted the joy of new life, not the threat of sudden death. This was a disaster. This was complete fucking failure. It could have happened for only one reason. I deserved it. Without ever intending it, I lived to destroy. My pessimism had become lethal. In the heat of that shower I knew without ever knowing it that my wife and I would never last.
I guess that’s life.
V
We leave Ohio and enter Indiana, making us at a minimum the one hundred millionth travelers to not notice any difference between the two. Zach and I pull into a rest stop off the Indiana Toll Road. Cars search for empty parking spots with territorial disease. A brown Soviet-style building sells potato chips and Life Savers and warm bottles of Diet Coke and compressed turkey and cheese white bread sandwiches. The bathroom is overlit. Travelers recede in slow motion, then disappear. There is only Zach and I, just like there was only my father and I, but with none of the joy of hitting a hundred on the empty night highway.
—Did the divorce make you sad, Zach?
—A little yeah.
—Was it hard going back and forth?
—A little hard yeah.
—Was it hard not being with both parents?
—A little hard yeah.
—It makes me sad. I’m sorry I did it. I’m sorry I did that to you. I cried a lot about it. Do you forgive me?
—Yeah.
—I felt very guilty. So did your mom.
—Yeah.
—You know why I think we got divorced?
—No.
—Because you guys were so sick.
—Yeah.
—The marriage changed. There was a lot of tension. You came home on oxygen. You were really sick and it was so hard. You should have died, Zach. Do you know that?
—I didn’t.
I pause here. It feels like the longest pause of my life. Should I go further?
—Do you know what brain damage is?
—No.
—What do you think it is?
—When your brain isn’t right?
—Do you know your brain is not a little right?
—Yeah.
—How do you know that?
—I just know from my brain.
—Does it make you sad?
—Yeah a little.
—How does it make you sad?
—Because I’m not sure how.
—Is it because of certain things you can’t do?
—Yeah.
—Like what?
—Not go to school like Gerry I can’t do.
It was the continued vow I made before the trip, to go with my son to emotional crevices we had never gone to before. I can tell when Zach’s answers are sh
ort and truncated because he does not understand. But I can also tell when Zach’s answers are short and truncated because he does understand, at least some portion, and is feeling pain.
I was not prepared for him to say that he knew his brain was not right. I was not prepared at all. It was the risk I took by asking. And yet I feel gratified. He does not always float in some ether of happy ignorance. He is aware of himself. But to have a child, your child, any child, say my brain isn’t right is still unimaginable. I have lived with that knowledge since he was born. But how does he live with it? The words repeat and repeat in my head. My brain isn’t right. I can’t get away from them and neither can Zach. He knows his life will lack so much. But he will not succumb to self-pity. He acts the way he usually does in a situation like this: he enters the rest stop to get some Combos and maybe a Kit Kat that he can eat without me knowing and ferret out as many maps and brochures of Indiana as he can find.
5. Failure to Forget
I
WE ARE BETWEEN New Carlisle and Otis on the Indiana Toll Road. But Zach’s mind has already made it to Chicago.
—I remember David Jackson he worked with you as a reporter at the Chicago Tribune I remember his desk it was near yours and another reporter there named Bob Blau you went to his wedding in Chicago on August 20 1994 his wife’s name was Leah remember when you and I and Gerry and Caleb and Sarah stayed at the Ritz-Carlton it was February 7 1992 there were some awards dinner or something.
The first memory, thirteen years old, bears hardly any relation to his own experience, since he met Bob Blau once and never met his wife. The second is fifteen years old.
He drops Chicago and moves on to our next destination, Milwaukee. He hardly pauses as twenty-year-old memories pour out of him. They have never disappeared, never even decayed. Most of us, as we get older, are defined by our failure to remember. Because of the chemistry of his brain, Zach is part of a rare group defined by what one physician calls “a failure to forget.” His memories form a concert without a single unifying motif, a vast collection of dissonant notes that Zach somehow gives consonance.
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