Alfred Steinschneider flew home from Seattle astonished by what he had just heard. He had never realized that so many seemingly healthy babies were dying mysteriously. Most of his work to date, most of the research he had published, had been so focused on how the mechanisms of new life worked that he had not noticed how often they failed. For him, Orcas Island was an epiphany.
Steinschneider had some thoughts on the subject of sudden infant death, but he knew the ideas he’d presented at the meeting were only by-products of his work on the infant nervous system—as Dwain Walcher had demonstrated, swipes and hunches tossed up by a novice in the field. Now, returning to Syracuse, he was struck by the realization that SIDS was the place to be in pediatric research. Thousands of babies were dying every year. There had to be a way of saving them. Abe Bergman’s plan had worked: Of all the participants at the 1969 meeting, it would be hard to find anyone on whom the proceedings had a more powerful impact than Al Steinschneider.
At this stage of his career, Steinschneider was virtually on his own in his research pursuits. His first mentor at Upstate Medical Center, Dr. Earle Lipton, had died in 1965, and Lipton’s research partner, Dr. Julius Richmond, to whom Steinschneider was also close, was busy running the bustling pediatrics department and serving as dean of the medical faculty. Richmond was a nationally prominent academic pediatrician and health policy expert who, a few years later, would be appointed the nation’s Surgeon General. In Syracuse he had created a flourishing, close-knit community in pediatric research, and few had taken better advantage of the creative climate, or benefited more from Richmond’s intellectual largesse, than Steinschneider. Now, a fresh opportunity beckoned. Returning home from Orcas Island, he told Richmond that he wanted to close down the pediatric psychosomatic clinic he was running and devote himself to exploring Sudden Infant Death Syndrome. “When do you want to do this?” Richmond asked. “Monday,” said Steinschneider. “Then do it,” said Richmond.
Though trained as a pediatrician, Steinschneider had never aspired to be a clinical physician. Even as a teenager, he knew that his calling was research. “Alfred was a very determined child,” his sister, Toby, remembered. “He was born determined. He always wanted his way. He was going to go to medical school, but he said, ‘Don’t expect me to carry a bag. I’m not going to be a doctor. I’m going to do research.’ And when Alfred made up his mind, he made up his mind. You didn’t push him.”
Steinschneider and his two older siblings, Toby and their brother Max, grew up in a household like thousands of others in the ethnic pockets of prewar New York City. They watched their father, Charlie, a voracious reader who had come from Austria and settled in Brooklyn, spend nearly his whole life painting and papering the walls of apartments and row houses. Their mother, Molly, who was born in Poland, sat on a stool in their apartment placing tiny rubber tips on the wire ribs of umbrellas, tedious piecework that had helped the family survive the Depression. Like many of their time and place, the Steinschneiders pushed their children to achieve. Max later decided that one of the ways to do this was to change the family name to Stone. He made the arrangement for himself and went into the retail food business, but his younger brother took the suggestion as an affront. “I’m Alfred Steinschneider,” he said.
Alfred Steinschneider’s road to success would be a learning curve. Enrolling in New York University in the fall of 1947, he embarked on an academic journey that was to last the better part of two decades, financed by his father’s sweat and fueled by his own overriding ambition to be not just Alfred Steinschneider, but Alfred Steinschneider, M.D. He graduated with a degree in psychology from NYU in 1950, expecting to move on immediately to medical school. But to his crushing disappointment, his applications were rejected. As he related it to his sister, he believed he was the victim of a quota system—prevalent at that time—limiting the number of openings available to Jewish applicants. He wrote letters to the admissions committees, but failed to change their minds.
Putting his ambition aside for the moment, Steinschneider married his first love, Roz Glassman, and applied to graduate school. Roz and Al had dazzled each other almost from the moment they met as students at Brooklyn’s Abraham Lincoln High School. “He grew on me very quickly,” Roz once said. “He had such goodness and integrity.” Also a child of immigrants, she was gregarious, energetic, and completely infatuated with her husband, who returned the sentiment openly and often. Years later, she would say that the three things she could always count on were “death, taxes, and Al’s love.”
They went west to the University of Missouri for Al’s master’s degree, and then two years later—Roz having had enough of the Midwest—back east, to Ithaca and the doctoral program at Cornell University. Steinschneider settled into the world of experimental psychology, spending the next three years testing theories of human behavior with J. J. Gibson, a prominent psychologist noted for his research in depth perception. Exploring a subdiscipline known as experimental psychopathology, he studied the nuances of human drive and determination, and one of the things he learned from watching rats scurry around their cages was that too much focus could sometimes be blinding. He made it the subject of his doctoral dissertation. “Every member of the department wanted a copy,” Roz later recalled, her pride undiminished by the years. She reveled in her husband’s intellect and his burning ambition.
He still dreamed of becoming a doctor one day, but at twenty-five and a new father, Steinschneider concluded that he could not delay earning a living. He found a job right on the Cornell campus. General Electric had opened a kind of commercial think tank it called the Advanced Electronics Center, and it was Steinschneider’s job to help engineers design user-friendly equipment, chiefly for the military. His job title was “human engineer.” In some sense, he was like a lab rat. He would imagine himself a bomber pilot, for instance, and help the engineers design an instrument panel conducive to the tasks of the Cold War. There were meetings. “What’s the hit rate?” someone would ask. And somebody else would answer, “Oh, you don’t have to hit the plane. If you explode near the plane, you’ll blind the pilot and he’ll crash.” Steinschneider hated the meetings. After three years, he resolved to try for medical school once more.
This time, he set his sights on two New York schools: the Albert Einstein Medical College in New York City and the state university medical school in Syracuse, about an hour’s drive north of Ithaca. Einstein rejected him—they wanted younger students, he concluded—but Syracuse made him a very happy man. Charlie Steinschneider, the immigrant who worked hard with his hands all his life so his American children could work with their heads, rewarded his son’s diligence by promising that he would pay for his medical education. Alfred Steinschneider was going to be a medical doctor at last.
The State University of New York’s Upstate Medical School had once been part of Syracuse University, but in the early 1950s, when Governor Thomas Dewey decided his state needed more medical schools, rather than start up brand-new schools he had the state government buy three existing ones—in Brooklyn, Buffalo, and Syracuse—and made them, along with the hospitals they came with, part of the SUNY system. Arriving in the fall of 1957, Steinschneider was confident he had come to the right place. Syracuse was attracting major young talent to its medical faculty and gaining as a research center. He was undecided about a specialty, but psychiatry was the early, natural front-runner.
Steinschneider enrolled in a seminar for first-year students that was team-taught by members of the medical faculty from various departments. Among these were the pediatrics department’s star research partners, the chairman Julius Richmond and his protégé Earle Lipton. A man of high accomplishment early in his career, Richmond was only thirty-seven when he was lured from the University of Illinois, and Lipton had followed him east. By the time Steinschneider arrived in Syracuse, the two men were a widely known team, publishing numerous papers in an area of pediatrics that they themselves were defining: the study of the newborn.
Steinschneider was stimulated by the seminars, and he found the pediatric professors especially engaging—more so than the professors of psychiatry. It seemed to him that Richmond and Lipton lived in a marvelous world of cerebral adventure, of questioning and discovery. In turn, Richmond and Lipton noticed Steinschneider, who was distinguished both by his age—at twenty-eight, he was five or six years older than most of his classmates, and only three years younger than Lipton—and by his background and personality. He not only had a doctorate in psychology with a grounding in research, but he was also clearly a young man with ambition. At the close of a seminar near the end of the academic year, Lipton asked Steinschneider if he’d be interested in a summer research position. He needed someone with a background in statistics and research design.
Steinschneider thrived on the lab life, fascinated by his mentors’ ongoing exploration of the physiological differences in newborns. At the summer’s end, with classes about to resume, Steinschneider asked Richmond if he could continue working in the lab part-time. Richmond agreed, and said he would pay him an hourly wage. A few weeks into the fall semester, as Steinschneider was racking up the hours, Richmond called him into his office. “It’s not working,” Richmond said. “Your primary commitment has to be to medical school, and if you have an exam coming up, you ought to be preparing for that, not stealing time to earn a living.” Steinschneider explained that it wasn’t just that he needed the money. He loved working in the lab. Richmond offered him a deal: He’d pay him every two weeks whether he had worked or not. He could make up the time on holidays and weekends. Richmond was the sort of administrator who tried to recognize and encourage talent, and Steinschneider felt lucky to be one of the chosen. He soon decided that pediatric research, not psychiatry, was his future. Richmond and Lipton were teaching him that within the bodies of newborn babies were many secrets waiting to be discovered, clues about the developing person that remained relevant throughout life.
By 1960, his third year, Steinschneider was a co-author on publications with the two senior researchers. The tools of their trade were not stethoscopes and tongue depressors so much as big, clumsy, homemade machines whose gauges, alarms, and polygraph paper measured and recorded the cardiorespiratory performance of their test subjects, primarily prematures and healthy newborns waiting for foster placement. With Lipton leading the way, Syracuse was a leader in this new technology, and the machines became central to the team’s work. The first model, developed by Lipton and a technician named Leo Walsh in 1957, used a small, temperature-sensitive bead that could be placed either in the nose or at the mouth to check the respiration of premature infants, who were especially vulnerable to spells of apnea. The bead sensed exchanges of cool and warm air that were then recorded electronically, setting off an alarm when respiration failed to occur. The raucous alarm, reminiscent of a foghorn, had two purposes: to startle the infant and summon a nurse. With their innovative monitors, Richmond and Lipton were also among the first to come up with the important finding that heart rates were so variable in newborns that it could not be said that one baby’s was normal and another’s not. Steinschneider, still a medical student, found himself part of one of the hottest research teams in pediatrics, a trio that would virtually define the physiology of the normal newborn. Their series of eight papers titled “Autonomic Function and the Neonate” became a staple of research journals in the early sixties. A definitive work, “The Autonomic Nervous System in Early Life,” was published in The New England Journal of Medicine in 1965.
It was in these crucial early years of his medical career that Steinschneider absorbed, primarily from Lipton, the importance not only of research and discovery, but of putting the work on paper. To Lipton, scientific investigation was almost moot without dissemination. Steinschneider not only liked sharing what he knew, he took Lipton’s philosophy a step further—sometimes to Lipton’s frustration. No matter how incremental or ambiguous the findings, Steinschneider came to believe that if it was worth knowing, it was worth publishing. His aggressiveness sometimes left Lipton annoyed and exhausted.
Though Lipton found Steinschneider a little brash for his taste, Richmond saw a lot of raw talent and admired his drive. Steinschneider, meanwhile, was discovering that the universe of medical research was vast, and that an investigator could go as far as his imagination and energy took him. At one point, he and Lipton began taking measurements of babies swaddled in blankets, an ancient practice still used in many parts of the world. In 1961, at the height of the Cold War, Lipton and Richmond traveled to the Soviet Union to learn more about swaddling practices there. (The Soviets agreed only after the American doctors promised not to reveal the names of anyone they talked to.) They didn’t take Steinschneider, but upon their return the research partners, along with their junior member, published a forty-six-page supplement to the prestigious journal Pediatrics on the history and future of swaddling. As Steinschneider always suspected and was now seeing firsthand, a doctor doing research could make his mark on the world in a way a clinician could not.
He also learned some basic lessons about science and money. By the time of his residency, pediatric research at Syracuse virtually owed its existence to the grants the federal government awarded each year to Richmond’s department. The chairman had set up a small but innovative program called the Children’s Clinical Research Center, or CCRC, and the money was a big part of what made it innovative. Before the 1960s, medical centers conducting clinical research used patients already in the hospital as their test subjects, tacking on a day or two to the patients’ stay and allowing insurance companies to pick up the tab. But such research was scattershot and secondary to the government’s own work at the National Institutes of Health. Under the Kennedy and Johnson administrations, NIH began subcontracting much of the country’s research to hospitals—and opened the vault to pay for it. Small research centers began to sprout within the nation’s large teaching hospitals. The CCRC at Syracuse, launched in 1963, was one of the first.
Though still a resident, Steinschneider’s age and strong personality, his academic accomplishments, and the political advantages of his association with Richmond and Lipton allowed him to assume an unusually prestigious and authoritative role among his peers. Indeed, by this point, Richmond was by now a member of the research team in name only, leaving Steinschneider as Lipton’s day-to-day partner. With the federal money that flowed through the CCRC, they pursued their studies in the clock tower atop Crouse-Irving Memorial Hospital, the looming Depression-era brick building that was at the heart of the medical center. Lipton had converted the space into a laboratory with a set of soundproof rooms, and stocked it with the latest innovations in monitoring equipment. What they didn’t have, hospital technicians built for them. Steinschneider compensated for his lack of experience with enthusiasm, recruiting a steady stream of babies to the clock tower. His pitch to new parents was an offer they couldn’t refuse: an opportunity to see how healthy their newborns were, and a chance to help doctors advance their understanding of how healthy babies differed physiologically from sick ones. No needle pricks. No invasive procedures. No cost. Just a few electrodes on the chest, some measurements on the monitor, and that would be it. The babies would be returned to their cribs in less than an hour.
Steinschneider loved the machines and worked closely with the technicians. He studied how the babies were affected by flickering light, sounds, images, even such basic activities as eating and sleeping. He delighted in poring over bits of data, calculating and analyzing the numbers, writing up the results. By the time he had finished his pediatric residency in 1964, his curriculum vitae included a remarkable twelve publications. In most, he was listed as the second or third author. But that was soon to change.
Earle Lipton was a quiet, sensitive man, with dark, curly hair and an uneven gait, a vestige of childhood polio. A meticulous, serious-minded teacher and researcher, he had grown up and gone to school in Chicago, where, during his internship, he had met and married Thelma Buhrow, a nurse at Cook County Hospital. She was a friendly and levelheaded woman, and she and Earle were a well-liked couple.
When it came to his work, Lipton was a man of high but fundamentally uncomplicated ambition. He wanted to learn, and he wanted to teach what he learned. So when his cousin Cyrus from Chicago hounded him to develop the baby monitors like a good American—“it’s new, it’s exciting—you’ll make a fortune!”—Lipton demurred. “If I wanted to make money,” he told his cousin, “I wouldn’t be teaching in medical school.” He was developing the monitor because it was worth doing and it satisfied him, he said, and besides, he worked for the State of New York. Profiting from work he was doing on time and with equipment paid for by the state would be unethical. Some people found their way around these things, but Earle Lipton was not going to be one of them.
At the beginning of the summer of 1965, Lipton fell into a deep, spiraling depression. He had suffered from clinical depression before, and though it was perhaps an effect and not a cause of this episode, his specific complaint now was that pressures were building at work. Steinschneider, who had finished his training and joined the research faculty the previous fall, was pushing to pick up the pace of their research, to publish even more. A symptom of Lipton’s depression was a sudden, overwhelming onslaught of professional self-doubt: He felt he had not been able to live up to the model of his mentor, Richmond, nor could he match the energies of his own protégé. By July, he found it almost impossible to make it into the lab. Most days he stayed home.
Lipton went to see a psychiatrist he knew at the hospital. The doctor prescribed antidepressants and continued to see him, but in August, he left on vacation and referred Lipton to a colleague at Upstate, Dr. Thomas Szasz, a maverick Hungarian-born psychiatrist made famous by the controversial antipsychiatry book he had published in 1961, The Myth of Mental Illness. Szasz saw Lipton a few times, but he too was going on vacation. Another Upstate psychiatrist, Dr. John Ross, agreed to keep an eye on him.
One day, Thelma heard a strange noise coming from the bathroom. She found her husband trying to hang himself with a towel. She called Ross, who wanted Lipton to be hospitalized. Lipton refused. “I’m not going in there with all those crazy people,” he said. But Thelma was relieved when Ross, a child psychiatrist who knew Lipton casually as a pediatric colleague, offered to let her husband stay with him for the night. Caring for their two young children, and tending to her husband’s growing despair, she was exhausted as well as worried. She was also eager to have a professional watch him.
The next day, Thelma picked up her husband at Ross’s house, but he grew more and more agitated through the day. When he agreed to spend another night with Ross, Thelma called Steinschneider and asked if he would drive them over. She didn’t want to drive him alone. Then she called Julius Richmond’s wife, Rhee, and asked if she would watch the two young Lipton children. “Tell Julie I’m sorry,” Lipton said to Rhee before he left with Thelma and Steinschneider. When he got to Ross’s house, Lipton kissed his wife good night and thanked Steinschneider for driving.
Early the next morning, Lipton seemed calm. Ross, judging the situation under control, decided he could safely leave his colleague alone while he went to the hospital to see to his patients. But at the hospital, Ross got a call from Thelma. Earle was supposed to call her at nine, and hadn’t. She had phoned Ross’s house and gotten no answer. Ross dashed home. He found Lipton in the basement. He had hanged himself with an electrical cord.
Lipton’s suicide lingered in the clock tower. Steinschneider was deeply shaken by his mentor’s sudden decline and haunting death. “How could I not have seen it coming?” he asked when he related the news to his sister, Toby.
His mentor’s death had come at a point, however, when Steinschneider’s career was on a swift, upward trajectory, and that fall, he was more driven than ever. He was about to start his second year on the pediatrics faculty, and he had a lot of research work planned. During the summer, as he, Roz, and their two children moved into a new house, the state university opened a new hospital catty-corner to Crouse-Irving Memorial, a mid-rise building at the foot of a steep urban hill whose modern window-and-panel architecture was a stark contrast to the forbidding brick fortress behind it.
The new hospital was designated the State University Hospital, though most people still called it Upstate Medical Center. The CCRC was installed in a corner of the fifth floor, one floor up from the pediatric ward. It was spacious and air-conditioned, had large windows between rooms to maximize observation by nurses and doctors, and had been designed to accommodate Lipton’s cumbersome electronic monitoring equipment, which was now in Steinschneider’s custody. A small, black, slightly incorrect nameplate appeared on the door of the unit: CHILDREN CLINICAL RESEARCH CENTER.
The new space was open to any member of the pediatrics staff interested in research: Write a proposal, get the protocols approved by the hospital’s human experimentation committee, and the okay from Albert J. (Jack) Schneider, the pediatrician who managed the unit, and bring your patients to the corner nursery. There were five beds, a staff of nurses, no bills for patients—and plenty of room. To Jack Schneider’s dismay, though, only a few members of the staff took advantage of the research opportunity. The money’ll go away if we don’t use it, he often warned, though it was also true that he had little regard for much of what was being done—“bullshit,” as he later described the work of doctors whose research seemed to have no practical goal. (Hearing the disdain flowing from Schneider thirty years later, a visitor was moved to ask if he had considered most of the CCRC’s research agenda junk. “As a matter of fact, yes,” the retired doctor said with a wry grin. “And I was in charge of it.”) Still, he thought at the time that there was no point in discouraging even the most obscure or dubious research. The money was there, at least until the government stopped sending it. Besides, Schneider believed in the general concept of the center. He needed the unit to do his own research.
His work focused on infant metabolic diseases. He used the CCRC to study children with phenylketonuria, or PKU, a congenital disorder that damages the nervous system and leads to severe mental retardation if not detected very early in infancy and corrected with a dietary adjustment. That, to Schneider, was research worth doing. He found it frustrating to spend his time trying to drum up research projects that he had no interest in. With many on the pediatrics staff, it was a futile effort. They were more interested in treating children than studying them.
The one exception, everyone knew, was Al Steinschneider. He was turning out a steady stream of papers, giving Lipton his share of the credit as first author until 1967, when his name appeared solo for the first time. It was at the head of a forty-seven-page chapter called “Developmental Psychophysiology” in a textbook on infancy and early childhood. Visiting his academic roots, he ran a psychosomatic clinic, where he would see children with a range of vague medical problems—asthma, headaches, stomach pain—symptoms he felt could have psychological underpinnings. In 1968, four years out of residency, he was promoted to associate professor of pediatrics, and was now a member of a slew of hospital committees: the Research Committee, the Subcommittee for Respiration, the Advisory Committee on Inhalation Therapy, the Resuscitation Committee. A man who had been crushed by his rejections by medical schools years before was now interviewing applicants to Upstate as a member of the admissions committee. At Crouse-Irving, Steinschneider became director of nurseries and chairman of the perinatal committee. He was also starting to make a name for himself nationally. He was elected president of the medical school’s chapter of the American Association of University Professors and was appointed to the editorial board of the prestigious Society for Research in Child Development.
Despite such expansive responsibilities, Steinschneider never lost an ounce of passion for intensive laboratory research, never became restless with the work Earle Lipton had set out for him. Exploring the volatile nervous systems of tiny babies, quantifying and evaluating them, ruminating on the inconsistencies—these were his true loves. The deal he had struck with Richmond when he joined the faculty was that he would teach and work in the lab. His clinical work would be minimal. For the most part, he would only see patients who might contribute something to his research. “Julius B. Richmond, God bless him, I love the man,” Steinschneider reflected years later. “He wanted me to do what I wanted to do. That was the environment he created. He built an empire, but not for himself. And I was always one of the pampered ones.” Lipton’s death, emotionally wrenching though it was, had made Steinschneider a free bird, liberated his energies and ambitions.
He found it easy to become immersed in the kinds of questions Jack Schneider dismissed as absurdly abstract. He would bring a baby to the CCRC, hook the infant up to the monitor, and watch what happened when he gave him a bottle. He would repeat this procedure with dozens of babies until he had observed enough babies to conclude, as he later wrote, “The onset of sucking is associated with an increase in cardiac rate which reaches a peak and then decreases slightly even during the sucking burst.” Then he would add the variable of room temperature. The babies would be given bottles with the thermostat set at 75 degrees, and then turned up to a sweltering 90. He would collate the results and painstakingly produce reams of data and endless graphs and charts. The meanings of these recordings would not be clear even to him, but he developed a flair for boldly suggesting plausible hypotheses, then presenting supporting data that he freely admitted were incomplete or inconclusive. The heart rate of a baby sucking on a bottle in a hot room was, he found, not much different from that of a baby feeding in a cooler room. “Thus,” he wrote with perhaps a hint of frustration, “once again we find ourselves in the position of not having sufficient data to warrant a definitive conclusion regarding the significance of this observation.”
One day late in 1968, Steinschneider got a call from Abe Bergman, who had established himself in his hometown of Seattle in the years since he’d worked with Steinschneider and Lipton during his pediatric research fellowship in Syracuse in the early sixties. Bergman had become involved in crib death, he told Steinschneider, and was putting together an important international conference on the subject. The guest list would be select and serious, and he wanted Steinschneider to come. The knowledge he and Earle had gathered on infant physiology was important work, Bergman told him, and sudden infant death was a compelling and emerging new field. Babies were dying, thousands of them, and a research movement was massing.
Steinschneider was flattered by the invitation, but he also felt somewhat intimidated by Bergman’s pitch. Not much had been said about crib death in medical school, and since he was a researcher and not a clinical pediatrician, he had had no direct experience with the problem. In fact, he’d never really thought much about it. But the conference would be a good opportunity. Steinschneider said yes, of course he would come to Orcas Island.
Now he had to come up with something to talk about. He thought of the bottle-sucking tests, and one particular premature baby who had been brought to Upstate because of recurring episodes of apnea at home. It was, of course, a common occurrence in preemies, but Steinschneider had noticed that during one of these brief apneic periods in the lab, the baby had turned blue and his heart rate slowed considerably when he stopped sucking. Steinschneider had become fascinated by the link between breathing and heart rate and began to consider the implications of this clearest manifestation of newborn autonomic instability—apnea. It was during his preparations for the coming conference that he first entertained the possibility that these fluctuations might be connected to death itself. He and Lipton had been unable to get the bottle-test research published (they’d followed it up with a paper on “Problems of Measurement,” which did get published), but Steinschneider thought it was good work, and now it seemed to have a purpose. He knew his presumptions were tenuous, but he hoped he could make them work as the centerpiece of his talk on Orcas Island. He agonized about how it—and he—might be received.
It was his own sense of inadequacy that Steinschneider would later remember most vividly about the day he mingled with the crowd of crib death experts and other eminent people on the ferry trip across Puget Sound. “I felt like a novice,” he would say. “I didn’t really know what I was talking about. Here are people that have been thinking about this big-time and I’m going with nothing to offer. I go because my friend asked me. The big kids are going to kill me. They’re going to eat me alive, because I’m silly.”
If he was indeed stricken by such deep insecurity, Steinschneider did a superb job of hiding it. Whether he was on familiar or foreign ground, he was invariably a man difficult to ignore—his silvery, resonant voice deepened by the Raleigh cigarettes he inhaled like air, his face accentuated by what one colleague remembered as “big, rectangular glasses reminiscent of a fifty-six Chevy—they magnified his eyes.” And by the afternoon of the second day on Orcas Island, his time at the lectern approaching, he felt emboldened. He realized that the big kids really didn’t know that much more than he did. They had a sense that babies were more apt to die suddenly if it was winter and if they had colds and they were two or three months old as opposed to one or nine. But all this thinking had not led them to answers. They had no grip on the mechanism of death, and they seemed wide open to new ideas.
He offered his work, his theory, suggested others follow his lead, and began to detect the unmistakable air of acceptance. There was one low moment with this doctor named Walcher, and it stayed with him. But the others had listened to him with interest and respect, and some chimed in with their own experiences that tended to bolster his. Steinschneider came home forever changed. He thought it “obscene” that somewhere between 10,000 and 25,000 presumably healthy babies would die that year without explanation, and that little was being done about it.
Steinschneider believed that the term invented at the conference was designed to give parents the feeling that doctors knew more than they did. But he knew that if he turned his attentions to SIDS, he, too, would have to emerge from the lab and move into the real world. SIDS would be a whole new universe—filled not only with epidemiologists, with whom he shared a love of statistics, and with pathologists eager for information about living babies because their sights were so narrowly fixed on the dead ones, but also with grieving parents looking to medicine for answers it did not have. He also knew that unlike the cloister in which he’d spent the decade since medical school, a scientific investigation such as SIDS would be full of politics and money, emotion, ego, and conflict. The obstacles to such an immense scientific investigation would be formidable, but in the distance he could see the chance to achieve something wonderful. He had to close down the psychosomatic clinic and get right to work.
Most of what he knew about SIDS he had just learned. He’d heard the epidemiologists talk about factors of age, season, and infection, and he’d heard one of them, Northern Ireland’s Peter Froggatt, say that there might be a familial factor at play. Froggatt had found that 5 of the 148 SIDS cases he reviewed had a sibling who had also died of “documented or presumptive” SIDS. Factoring in all the live-born siblings in the entire sample, and taking the data at face value (without exploring further to rule out all other possible causes), Froggatt’s study suggested that the chance of a subsequent sibling dying was between 1 and 2 per 100, a figure much higher than the 2 per 1,000 that would be expected from a random sample. Steinschneider, an avid gambler and frequent visitor to Las Vegas, took significance from these odds. But they said nothing about cause.
Warren Guntheroth talked about cause, and it was striking to Steinschneider how his thoughts complemented his own. Guntheroth suggested that maybe SIDS babies were susceptible to a specific variety of breathing interruption. If SIDS occurred primarily during the first few months of life, it seemed sensible to think that it could be related to the autonomic instability peculiar to those same months. Why did only a few babies die? Maybe there was something about them, an abnormality they were born with or developed soon after birth, that predisposed them to such a sudden event. Steinschneider found a remark by Marie Valdes-Dapena especially penetrating: There was virtually no role here for pathologists, she’d observed, if a key part of the definition of SIDS was the absence of findings at autopsy. “If there’s nothing wrong with these kids,” he heard her voice say in his head, “then what do you need a pathologist for, except to say that there’s nothing wrong with them?” Steinschneider took this paradox as a touchstone. Perhaps there was something wrong with these babies—maybe they weren’t perfectly healthy the second before they died. It wasn’t obvious at autopsy, not yet anyway, but maybe there was a way to find it in living babies, before the final event. Maybe some babies were congenitally vulnerable to pulmonary or cardiac abnormalities so severe that it made their apneic periods not routine, but hazardous—a warning sign.
Guntheroth thought so. He’d seen babies come into the emergency room requiring resuscitation. They had just stopped breathing and turned a pale shade of blue. They didn’t die, but conceivably this was some kind of near-SIDS that could help explain why others did. The near-miss concept was probably the most intriguing idea of the conference. For Steinschneider, a close second was Guntheroth’s idea to use some sort of monitoring device to protect babies deemed to be at risk. Steinschneider, of course, came from the cradle of monitors. The connections were clicking into place.
He decided that what he needed to do now was figure out which babies might be at highest risk, bring them into the lab, record their respiration, and see whether any patterns emerged. He set out to find these babies. Nobody had ever done that: actually gone out and sought infants who might be at risk for SIDS. Of course, to test his hunch properly, using the statistical research designs that were the bedrock of his training and experience, would be phenomenally arduous and time-consuming: If the SIDS rate was two deaths per thousand live births, a researcher would need to study thousands of babies and compare the breathing patterns of the normal ones to those who went on to die of SIDS, before he could come to any firm conclusions about the role of respiratory control. Unless he was blessed with perversely good fortune, that could take years.
Unfortunately, deaths were critical. Dwain Walcher had demonstrated the crudity of Steinschneider’s proposition by virtually cross-examining him on the question of whether any baby he’d seen with apnea had gone on to die. He could not cite a single death. The moment had made him feel foolish. It also made him think about strategy. “This guy was saying you can only study SIDS if you study dead babies,” Steinschneider recalled. “So the problem was how do you study living kids to find out about babies that die? What is the difference between high-risk babies and low-risk babies? Maybe that difference existed in the babies that died.”
Where to start? The near-misses. Why did they happen, and what did they mean? Taking Guntheroth’s experience a step further, Abe Bergman and Russell Fisher, the Maryland medical examiner, had cited cases of babies rushed to the hospital by their parents—survivors of near-misses who later went on to die of SIDS at home. Was there a connection? Steinschneider thought so. The missing piece was direct clinical observation. Documenting the breathing patterns of babies was exactly his line of work.
And so the hunt for babies began. Steinschneider began putting the word out to pediatricians in Syracuse and in the counties beyond: He was pursuing Sudden Infant Death Syndrome, and he was anxious for subjects. “I told docs that if they had kids who came into the E.R. with these near-miss incidents, I wanted to see them,” he recalled. “Each of us might see one baby in two years where we don’t know what’s going on. So what you do is you say, ‘Al, you’re it. You get them all. You get to understand these kids and then you teach us how to take care of them.’ I told them, ‘If you don’t know what’s going on, let me sweat about it.’ ”