In 1967, aerospace engineer Parker H. Petit—everyone called him Pete—had decided it was time to leave Texas and come back home to Georgia. He and his wife, JoAnn, were in their late twenties, the parents of a baby son, and their two years in Fort Worth, where Petit worked for General Dynamics, had been an adventure. Now they were ready to return to Georgia and settle down. Petit went to work for Lockheed and bought a house in the Atlanta suburbs. In the winter of 1970, JoAnn gave birth to their second child, another boy. They named him Brett.
And then the unthinkable happened. Petit had just finished mowing the lawn when he heard his wife’s screams. He rushed upstairs and found JoAnn holding their lifeless baby in her arms. They rushed him to the hospital. The emergency doctors brought back Brett’s vital signs, but by then the loss of oxygen had caused massive brain damage. After two days, they removed the baby from life support. Brett was six months old. He left no medical clues behind.
Like all SIDS parents, the Petits struggled to understand how their healthy, active baby could just … die. After they buried Brett, they drove to the North Carolina mountains for a few days of reflection. They talked about whether there was anything they could have done to save their son. It seemed that JoAnn happened to walk in on a SIDS in progress, but she hadn’t walked in quite soon enough. Petit couldn’t get past that. It occurred to him that there ought to be some sort of device to warn parents if their babies stopped breathing. Maybe it would save the lives of other babies, and save their parents from excruciating torment. Returning from the mountains, Petit called Brett’s pediatrician, Dr. Scott James, and asked him what he thought of the idea. The doctor liked it. The only monitor he knew of was the Air-Shields model used on preemies in the hospital. It was notoriously unreliable, and unsuitable for home use. Petit and James made a drawing of a prototype. With three dials and an antenna, it looked like a ham radio.
Petit went back to work at Lockheed, but all he could think about was building a baby monitor. He and his wife joined the local chapter of the SIDS Foundation, and entered a world where parents like themselves were bound by a distinct and painful group psychology. The guilt and confusion could be agonizing. The SIDS diagnosis conceived the year before offered some succor; parents needed to hear that there was nothing they could have done. But Pete Petit was different. The idea that there was nothing he could have done didn’t make him feel better. It made him angry.
And it made him think about money. Petit’s name was pronounced like the French word for diminutive, which happened in his case to be only partly appropriate. He was a small man with big ideas. He quit Lockheed, and persuaded his friends, neighbors, and a number of local doctors to invest in a company he named Life Systems. He went to night school for an MBA and hired a couple of electrical engineers at Georgia Tech to help him develop an infant monitor, paying them in future stock. The idea he and Scott James had come up with was to use telemetry, radio signals transmitting over short distances. A miniature monitor, held to the baby’s chest by a belt, would measure heartbeat and respiration, then transmit the information to a receiver. If there was trouble, the receiver would send a signal to a smaller receiver that could be carried, like a transistor radio, by the baby’s caretaker. It looked good on paper, but they couldn’t get it off the page. Petit concluded the device was ahead of its time. He also realized that a successful entrepreneur needed something more than a mountain of moxie and a pretty good general idea.
Trying to keep his venture afloat, Petit began developing devices that could protect children. His first product was Scott James’s idea: an alarm that attached to a cabinet and sounded when the door was left open too long. He called it the Toddler Alarm, and began selling it to stores. IT CAN HAPPEN, read the retail display. Petit got the gadget into the Sears and J.C. Penney catalogues, and it made just enough money to support further development of the baby monitor. His first major product, meanwhile, was an artificial ventilator system he began selling to hospitals. On one sales call, he noticed the name Life Systems on someone else’s equipment. His lawyers had overlooked the trademark. Petit went home, jotted down some alternative names, and settled on Healthdyne. He liked the suffix “dyne,” the Greek word for “force.” Maybe it would breathe life into the infant monitor concept, his reason for being. The company was almost constantly on the verge of bankruptcy.
Petit dropped telemetry in favor of photoelectricity, and on November 16, 1972, he filed application number 307,091 with the United States Patent and Trademark Office. He called his invention a “respiration monitor.” It used a two-piece light sensor to register pauses in a baby’s breath. “To summarize the situation,” he wrote in his application, “the currently available monitors are so complex that the expense precludes their use in many instances where they are required.” His model, he wrote, would be inexpensive, simple to operate, rugged, and more reliable than current models. Although he refrained from saying it in the long technical explanation of the device—the nine official Claims and twelve Drawn Figures of a baby attached to his monitor—Petit envisioned the contraption as a machine that could save babies from SIDS.
One day soon after, Petit was elated to hear that there was a doctor sending babies home with monitors in upstate New York. Alfred Steinschneider’s apnea paper had been published in Pediatrics just a month before Petit filed his patent application. Petit realized this was the man to see. He flew to Syracuse with his prototype.
Petit wasn’t the only engineer hauling homemade equipment up to the fifth floor of Upstate Medical Center. Steinschneider had made it known that he wasn’t happy with the monitors he was using, but couldn’t get Air-Shields interested in developing one for home use. Every six months or so, a new vice president of marketing would come see him, listen to his complaints, nod his head when Steinschneider said there was a large potential market for home monitors, and leave. One of them finally told him that the company’s market surveys consistently showed that there was no future for a home apnea monitor. “Well, what they didn’t realize,” Steinschneider said years later, “is that there was no need for a CAT scan either. Nor an X ray. This was a new concept.” But with his growing reputation for sending babies home with monitors in the wake of his 1972 paper, Steinschneider found himself testing a parade of prototypes from engineers interested in this new market. “They’d say, ‘Al, what do you think?’ And I’d say, ‘Do you want it straight? It’s clever but it doesn’t work.’ ”
Pete Petit’s design was a photoelectric cell that would be attached to the chest. If the infant’s chest failed to move, the light would flash and the flash would trip an alarm. Very clever, Steinschneider said, but it doesn’t work. It was too hard to get the cell positioned to stay on the chest. But Steinschneider was intrigued by the brash young engineer. He invited Petit over for dinner. “He told us how many mortgages he had on his house,” Steinschneider remembered. Petit went home to Atlanta and tried to keep from going out of business. But he had been equally impressed by Steinschneider. Maybe he didn’t have it quite right yet, but the trip to Syracuse only confirmed his belief that a baby monitor would be his salvation.
By 1975, Steinschneider’s sleep apnea hypothesis was the leading theory of sudden infant death in the world.
There were other theories. In SIDS, there are always other theories. They appeared and disappeared like blips. It was the deaths of the H. babies that made Steinschneider’s theory sound right, and the way he marketed them that caused others to follow. His salesmanship was especially effective because, as he demonstrated in Toronto, his charismatic beliefs were always couched in careful, appropriate language that helped him maintain professional credibility. It was his special skill. But if his methods were not always obvious, his intensity surely was. “What you’re talking about is medical zealotry,” observed Abe Bergman, who knew as well as anyone how vulnerable the SIDS community was to the pull of emotion. “It was messianic, not scientific.”
Steinschneider also had the luck of timing. He began propagating his theory just as the pediatric subspecialty of neonatology—the care of newborns—was beginning to flourish. Medical schools across the country were forming neonatology departments, offering research fellowships that attracted droves of freshly minted pediatricians just out of residency. To accommodate them, teaching hospitals were opening intensive care units just for newborns. The apnea theory of SIDS was made for this new field. In the neonatal research lab, it was something to study, and this was now where the grant money was. In the clinic, it was something new to be aware of and perhaps to treat. Steinschneider had made apnea a condition to worry about. The field was becoming obsessed with infant breathing patterns because he had linked them to sudden death.
It went virtually unnoticed that as the attention being paid to apnea made it more familiar, the baseline concern for full-term babies settled on pauses greater than twenty seconds, not fifteen, which was the criterion on which Steinschneider had based his theory. In fact, some thought even spells that long should not be associated with SIDS. The NICHD, responding to the attention on the apnea theory, had commissioned a nearly $3 million contract with a University of Southern California pediatric researcher, Joan Hodgman, to explore cardiorespiratory reflexes in infants, with a specific emphasis on determining what exactly constituted “normal” newborn respiration. Collaborating with a team from UCLA, Hodgman and her group were beginning to find that the patterns varied so widely—babies with a lot of apnea were apparently just as normal as those with not very much—that it probably wasn’t a very good tool for identifying babies at risk. Yet, in the unstoppable rush to apnea, it was Hodgman’s data, not Steinschneider’s, that were viewed skeptically, and in her failure to go along with the new conventional wisdom, she found it difficult to get her work published.
As other lines of thought about SIDS fell by the wayside, scientists from Cleveland to Palo Alto, many with their own government grants, set about trying to advance Steinschneider’s hypothesis. The number of federally supported SIDS research projects was climbing fast—it would go from one project in 1971 to forty in the peak year of 1977, with dozens of others addressing SIDS-related matters—and the vast majority of them had to do with sleep apnea. Researchers in Europe joined the hunt, and even lab animals at Yale and Oxford were doing their part. All these studies were the progeny of Steinschneider’s paper. When scientists cited their hypothetical bases at the end of their papers on respiration and SIDS in these years, Steinschneider, A.: Prolonged Apnea and the Sudden Infant Death Syndrome, Pediatrics, 1972, was invariably at the top of the list. Steinschneider’s call for a “concentrated research effort” at the 1969 meeting was being answered beyond even his imagination.
At Stanford University, William Dement and Christian Guilleminault were dividing apnea into three varieties (central, obstructive or upper-airway, and mixed), and finding that the heart rate slowed during all three. In the neuroscience and anatomy labs at the Veterans Administration Hospital in Sepulveda, California, Theodore Baker and Dennis McGinty were putting ninety-three kittens in Plexiglas chambers and depriving them of oxygen to see if it depressed their respiration and heart rates as they slept. Yes, they found, it did. They thought their conclusions offered credibility to Richard Naeye’s hypoxia findings, which had emerged, by reputation, as strong character witnesses for Steinschneider’s apnea theory.
Of all the SIDS investigators who embraced the theory, none had a grip more powerful or hotly contested than Dick Naeye. His career took a sharp turn upward at the arrival of Steinschneider’s paper, and within a couple of years he, too, had become famous, moving into the company of fellow pathologists Molly Dapena and Bruce Beckwith as one of the leading lights of SIDS investigation. In fact, Dapena and Beckwith argued fiercely about whether Naeye’s work was worthy of this distinction. It did not escape their notice that both Steinschneider and Naeye seemed to find much of their self-worth in the lavish acclaim heaped upon their discoveries. Only later would it seem that their work, too, had more in common than was obvious to the casual eye.
A slender man with a ready smile that belied a seething personality—“My highs are his lows,” a colleague once remarked—Naeye [pronounced Noya] was a devout Christian whose religious fervor, some felt, gave his scientific beliefs an incongruously moralistic tone. In the four years after Steinschneider emerged with his theory, Naeye’s discoveries, set forth in a series of celebrated papers on the possible relationship between SIDS and the conditions of oxygen deprivation known as hypoxia and hypoxemia, shook the SIDS research community like a good-sized earthquake and several tremors. The genesis of Naeye’s findings was strikingly similar to the events that had given rise to Steinschneider’s: a meeting, a revelation, an immediate, stirring discovery. In fact, this sequence came at almost exactly the same points in their careers, when each had reached his early forties having devoted years to scientific inquiries involving the health of babies, laborious but largely obscure quests that were to take on new and very public meanings when they came upon SIDS.
Since his early years, Naeye had specialized in autopsies of fetuses and stillborn babies. It was a pathologist’s way of studying the environment of pregnancy. In the early 1970s, at the invitation of an Ethiopian pediatrician he met at a meeting in Cleveland, Naeye began traveling regularly to Africa to collect data on how dietary deficiencies during pregnancy contributed to the failure of some babies to make it out of the womb alive. “The years in Africa changed me because I encountered human suffering of untold numbers,” he remembered. “So many starving, dying people living on the edge of survival.” It frustrated him to be unable to do anything about it. By that time, Naeye had also become expert in the lung disease that frequently killed coal miners in the regions of Pennsylvania and West Virginia near where he worked. But he never lost his interest in infants, and he noticed out of the corner of his eye that SIDS had become a growing preoccupation among his brethren.
Though pathologists had naturally been the early investigators of SIDS, for them it was still a wide-open field. Most crib death victims only made it as far as the emergency room, if they got to the hospital at all, and from there often went directly to funeral homes, remaining, as Bruce Beckwith once noted, “relatively insulated from critical scientific minds.” More often than not, the presumed futility of the exercise caused coroners and medical examiners to dispense with autopsies of babies.
In the winter of 1973, Beckwith was helping Eileen Hasselmeyer organize one of the NICHD’s research workshops designed to draw investigators into SIDS research. The meeting would be devoted to pathology, and among those Beckwith invited was Penn State’s pathology chairman, Dick Naeye. At this meeting, Naeye heard about the apnea paper for the first time; it had been published a few months before in a journal he didn’t regularly read. Naeye quickly concluded that SIDS was a vital, unfolding field, and that the theory made perfect sense. Why couldn’t it be, as Steinschneider seemed to think, that a fatal episode of apnea was only the last and most extreme of many spells, the result of a subtle but chronic abnormality? Naeye knew that some adults had recurring slowdowns in their breathing rates during sleep that stopped short of apnea. The result was an oversupply of carbon dioxide in the blood that could produce measurable changes in the size of the small pulmonary vessels. What if infants had similar episodes, and it led to chronic oxygen deprivation in their blood or in their tissues? “If that’s the case,” Naeye hypothesized to himself, “I should be able to find it at autopsy.” He was edgy with anticipation when he stepped up to Beckwith at the end of the meeting. “Bruce, this is very exciting,” he said. “I think I can do some positive stuff.”
To Naeye, there were followers in science, and there were innovators. “A real creation in science,” he observed, “has to do with unreasonable perseverance. Challenge things people believe in, look at things people ignore.” He imagined that he and Steinschneider, whom he’d never met, were cut from the same mold—innovators, restless for discovery. Naeye went back to Pennsylvania and immediately called Russell Fisher, the Maryland medical examiner, looking for subjects of his own.
As a medical examiner, Fisher was right in the middle of the fray, and with Saul and Sylvia Goldberg prodding him along, he had become a prominent source of information and raw material. Naeye invited himself down to Baltimore. Take whatever you need, Fisher said when he got there. Naeye pored through the little file drawers in the basement. In the pathologists’ world, subjects came in the form of slivers of organ tissue pressed between thin glass slides. Naeye wanted the pulmonary artery. He collected slides from the autopsies of sixty-two SIDS victims, and thirty-nine from babies who would serve as his control group—victims of accidents, homicides, and such natural causes as bacterial meningitis. He put the slides in his briefcase and raced home to Hershey. There he had a second control group—slides of artery tissue from ten babies who had died in Leadville, Colorado, a place whose high altitude, 10,170 feet above sea level, led to low concentrations of oxygen in lung tissue.
The lung and its environs were Naeye’s narrow universe—it was where he directed his eyes when he explored both stillborns and coal miners—but nobody had ever found much in the organ that might explain SIDS. In fact, as pathologists tried to explore the tiny, delicate lung-tissue structure, they often inadvertently upset the integrity of the organ. The lung was a likely place to hunt for a clue, but the search could be as precarious an exercise as the detonation of a bomb. It was not the only reason the lung was one of the most enticing and yet most elusive areas of SIDS investigation. Pathologists generally agreed that lung congestion should best be ignored because it was so unspecific—any number of things could cause it. And attempts to determine if the lungs of SIDS babies were physiologically abnormal were difficult undertakings because of the paucity of good controls. Not many babies who died during their first year died of something other than SIDS. Few pathologists had as large a collection of infant tissue as Russell Fisher.
In Pennsylvania, Naeye and his lab assistants began examining the small pulmonary artery, a thin structure that is the pipeline between heart and lungs, to see whether there was anything distinctive in SIDS babies. Given his working hypothesis, size was the obvious place to start—size as determined by how many cells were in the muscle tissue. Other pathologists had been over this general terrain, but Naeye thought the key might be in the detail. Maybe the usual method for calculating cell counts, a technique called planimetry that involved rolling a device around the edges of the slide, was inadequate to the task. Blood in the tissue hid some cells from the search. There was another way, Naeye decided.
The work was tedious. He laid a sliver of artery muscle on a slide with a tiny grid etched into it. Then he peered through his microscope and started counting the cells one by one. Using this method, Naeye began to see that the SIDS babies seemed to have more cells, more artery muscle, than the controls. Under the microscope, these artery cells appeared to be almost swollen, and when he found a similar abnormality in the tissue from the Colorado babies, he detected a possible breakthrough. Put alongside what he knew about the effects of adult apnea, he thought it was early evidence that SIDS babies had hypoxia—a low concentration of oxygen in the tissue—and hypoxemia, low levels of oxygen in the blood. He took this as the first physical evidence of a respiratory abnormality in SIDS babies and evidence of a chronic oxygen deprivation that fit perfectly with the kind of recurring respiratory pauses Steinschneider had reported in his SIDS babies. In less than three months, Naeye believed, he had turned the key. It was these findings that were published in the eminent New England Journal of Medicine within a year of Steinschneider’s paper. They were a booster rocket for the apnea theory.
Steinschneider and Naeye met for the first time soon after the NEJM paper, and it was an explosion of raw energy. They became partners-in-theory, a dynamic if unofficial team pulling the field in the direction of their ideas. Suddenly, out of the heap had come a theory from pediatrics and backup from pathology, each supporting the other in a delicate balance. With his first paper, Naeye became a SIDS researcher of credibility. A second heralded discovery came less than a year later: that “many” SIDS victims seemed to retain an unusually large proportion of fetal “brown fat” cells around their adrenal glands, cells that are normally replaced by white cells soon after birth. Naeye explained that the reason this was significant—and the reason he had looked for it in the first place—was that other pathologists had found that people who had died of respiratory diseases that prevented them from getting enough oxygen seemed to have brown fat cells coating their adrenal glands. Though he found the brown fat in less than a third of the SIDS victims, Naeye thought it was further evidence of hypoxemia—and apnea.
The second round of findings was published in the equally prestigious journal Science. Naeye opened this report by citing Steinschneider’s two SIDS victims as the basis of his own theory, then wrote that, thus far, he had found two “tissue markers” linking oxygen deprivation with SIDS. Naeye’s work had a powerful impact. He was showered with attention and credit, and by the time he preceded Steinschneider to the podium in Toronto, he was sparking an outbreak of pathology research aimed at confirming his dramatic findings. Eileen Hasselmeyer, who had started to put her money on the apnea theory and had a growing stake in its success, invited Naeye to Bethesda to be a distinguished lecturer. “I want to be cautious, but the pieces of the puzzle are beginning to come together,” Hasselmeyer declared in a story about Naeye’s breakthroughs that ran on the front page of The National Observer a month before the Toronto meeting. Even Molly Dapena, the great debunker of SIDS theories, was excited. She thought Naeye was making wonderful discoveries, and set out to replicate the research.
After fifteen years on the SIDS front, Dapena found it exhilarating that one of her fellow pathologists had finally found something to distinguish a SIDS victim. She hoped it was true and wanted to be among those to confirm that it was. Naeye’s discoveries sold Dapena on the excitement of the apnea theory—and opened her mind to the monitoring concept that was tethered to it like a baby to the machine itself. It led her to think that Steinschneider, with whom she was becoming close friends, might be right when he said that babies who survived seeming near-misses should be put on monitors at home.
Dapena kept her hopes high despite a problem she confronted from the outset: When she looked at tissue slides under her microscope, she didn’t see what Naeye saw. When she told him on one occasion that she was having trouble confirming his findings, she was dismayed to find that she had hurt his feelings. Shortly after the article in Science, Dapena drove from Philadelphia to Hershey with John Emery, a British pathologist and SIDS researcher who was visiting from London, to see how Naeye read the tissue marker for brown fat. Naeye explained his technique, and Dapena and Emery returned to their labs to resume the task. Emery still couldn’t replicate the findings. Dapena could, but barely. She found that SIDS babies over five months old did have more fetal brown fat than the controls, but the difference was not statistically significant. Moreover, she couldn’t confirm the findings at all in babies between two and five months—the prime SIDS age. Meanwhile, she strained to keep up with Naeye’s furious pace of discovery. By 1976, his count of markers would reach seven, and when they were sure he was done, his colleagues, though unable to replicate many of them, certified the importance of his discoveries by referring to them as Naeye did. They were the Seven Tissue Markers of SIDS.
“He came up with all seven of his markers in three years,” Dapena remembers with a skepticism that she didn’t have at the time. “It took me three years just to do one.” Despite the murkiness of their validity, the Seven Tissue Markers became a milestone in the SIDS hunt, and elegant evidence for the apnea theory. He was hopeful, Naeye told a reporter from Science, that his work would help lead to some kind of test that could predict SIDS.
Still, some researchers had serious doubts about the legitimacy of the tissue markers—and about their effects. Most skeptical was the man who had recruited Naeye in the first place, Bruce Beckwith. He was troubled not so much by the emphasis on apnea as a theory to be explored and tested, as by the hastiness with which it was being accepted. “The mistake was that it was being thrust prematurely into the public arena,” he later reflected. “With Steinschneider, Naeye, Dapena, and others, I think there was a lot of eagerness to show some results to the NICHD, to the public, to the press, and here they had something that they could get a finger on. The SIDS victim can be identified in advance. We have a way of preventing it. We have pathologic evidence that they have chronic recurring breathing problems. There was an accumulated, no-holds-barred advocacy for it, and people at the NICHD became very enamored of it.” He saw how bright, experienced, well-meaning people—Dapena, in particular—became enthralled with the idea that Naeye’s research confirmed Steinschneider’s. “Molly was completely taken in by Naeye’s findings, and she was the reason he got so much credibility. In the pathology community she was a vigorous advocate for the Seven Tissue Markers, and she was a very credible, very authoritative person, and she was very close with the people at NIH. She was doing all these annual reviews of the SIDS science, and it always started out with the exciting observations of Naeye. I was not convinced, and I argued with Molly about it. I think she took her data and wanted them so much to support him that her conclusion was that it did support him, even though she said flat out in her papers that there was not a statistically significant difference [between the tissue of SIDS babies and that of babies who died of other causes]. And so she’s falling from scientific objectivity a little bit. But Molly was a powerful force influencing NIH and others to go along with it.”
If Naeye’s pathology had the most explosive impact on the science of SIDS inspired by Steinschneider, it was a Boston pediatrician named Dorothy Kelly who was beginning to have the greatest consequence on its culture. With her mentor, Harvard clinical researcher Daniel Shannon, she had started modestly, on an independent track, but by 1975 she was Steinschneider’s compatriot in monitoring. Ultimately she would help him turn a concept into a movement.
In the spring of 1972, a few months before Steinschneider’s paper was published, a doctor in Cambridge had referred a baby to Shannon, then a thirty-seven-year-old pulmonary specialist who had founded the pediatric ICU at Massachusetts General Hospital and taught at Harvard Medical School. The baby had required resuscitation right in the delivery room, the first of many severe apneic spells just after birth. Shannon determined that the baby had been born with an extremely rare condition commonly known as Ondine’s Curse, a malady that caused her breathing to slow down or cease every time she slept. Informed of the “curse,” the baby’s parents, Portuguese immigrants who spoke no English, took to coming to the hospital dressed in black. Shannon put the baby on a mechanical ventilator and renamed the condition congenital central hypoventilation. Then he began calling pediatricians around Boston to see if they had seen cases like it. Shannon, like Steinschneider, had spent several years studying how the brain controlled infant respiration, and now he wondered if the curse of Ondine came in less obvious varieties, and whether SIDS was the result of one of them.
After twenty calls, he got one referral: a baby who had had apneic episodes that frightened his mother, who was a nurse. Shannon put the baby on an Air-Shields monitor in the hospital, and when his mother asked if she could take him home with it, he had no objection. Shannon was happy to see the baby thrive and come off the monitor, but a few months later, when he retrieved the October issue of Pediatrics from his mailbox and read Steinschneider’s paper about two babies who hadn’t been so fortunate, he concluded he was right to think about apnea and SIDS.
Kelly arrived in the ICU as a resident on rotation the following year and became intrigued by these questions preoccupying Shannon and her new field in general. A nurse who had gone on to medical school in Detroit before arriving at Mass General for her internship and staying on for her residency, Kelly was initially puzzled by Steinschneider’s report. It didn’t seem to fit what little experience she had with SIDS. A college friend had once lost a baby, suddenly and without any prior symptoms, let alone a chronic condition such as the one Steinschneider described. But with Shannon’s cases in the foreground, Steinschneider’s theory changed Kelly’s assumptions about SIDS and, as it did for Shannon, drew her into the mystery.
Kelly was struck by the “near-miss” and familial connections of Steinschneider’s paper, and soon came upon a case that she took as evidence that he was on the mark on both counts. A baby came into the Mass General emergency room, “presenting almost dead,” Kelly later recounted. “A trach was done, but she didn’t make it.” It turned out that the baby’s older sister had been a patient of Shannon’s a year before. He had treated the older child for recurring apnea requiring a number of resuscitations by her mother. She eventually outgrew the problem, but now, with her baby sister’s death in the E.R. a year later, Shannon worried about her again. Though she had surpassed the usual age for SIDS, he wanted to put her on a home monitor. He and Kelly paid no particular attention to the mother’s odd reaction. She decided to give her surviving child up to foster care. “She was anxious about using the device,” Kelly explained.
With this experience, and with Steinschneider’s SIDS family as Exhibit A, Shannon and Kelly decided they ought to start looking very carefully at siblings of SIDS victims. “What Al’s paper did for me was to make me believe sibs are at greater risk,” Kelly said. And they became increasingly enamored of the monitoring idea. Shannon, who taught at the Massachusetts Institute of Technology as well as at Harvard, was intrigued by the concept of bringing medical technology into the home. Kelly was even more excited by the possibilities. Convinced that SIDS could run in families, and that some babies did almost die, she thought home monitoring was a marvelous way to allow parents, with the proper support from professionals, to protect their children outside the hospital, and at far less expense.
She and Shannon sent only ten babies home on monitors in the next couple of years, but by 1975 Kelly had become an apnea apostle. She moved on to a Harvard pediatric pulmonary research fellowship that year, but it could have been more aptly termed an apnea fellowship. Under Shannon’s tutelage, she launched her own home-monitoring program and began soliciting referrals from around Boston. Meanwhile, like Steinschneider, they tried to get a handle on what constituted dangerously abnormal respiration, and whether it could be identified in advance of a life-threatening event. Shannon engaged some of his MIT students to build a device that could print out tracings of a baby’s respiration recorded on tape over a twelve-hour period. He and Kelly called these recordings “pediatric pneumograms.” It was their hope that they could be used to identify infants at risk of SIDS.
To explore their idea, Kelly went looking for normal babies to bring in for overnight testing. Twice a week, she headed to Cambridge Hospital to sell the concept to pediatricians and new mothers, and with their help she began developing an idea of what she thought an abnormal pneumogram looked like—and hence, which babies might be susceptible to sudden death. Within a year, she would have twenty-five babies at a time on home monitors in the Boston area. By her own account, most of Kelly’s peers thought she was at the least jumping the gun and very possibly batty. But she was too convinced to care. Of all the doctors in America who took the apnea leap of faith, none leaped higher, more resolutely, or with more consequence, than Dotty Kelly. And nobody appreciated it more than Al Steinschneider. When he visited Shannon and Kelly that year, he was pleased to see his work being taken up at Harvard.
In the summer of 1975, the medical and scientific world’s consecration of Steinschneider’s theory became all but official. That August, Science, the bible of the American research establishment, announced at the head of a 2,500-word report on crib death that the search for a cause had recently made such bold advances, there seemed good reason to hope that the ancient code might soon be cracked. The two SIDS deaths in Steinschneider’s 1972 paper had changed everything, said Science. “Now there is a growing body of evidence that the victims of crib death are not completely normal—and their deaths not as inexplicable—as was once thought, but rather that these infants have subtle physiological defects, probably in the mechanisms that control breathing. Thus, it may be possible to detect potential crib death victims and prevent them from dying.…” Virtually the entire report was about Steinschneider’s apnea theory, along with the support it had received from Naeye’s rapid-fire breakthroughs in Hershey.
It didn’t take long for the popular press to pick up on the hubbub. “What appear to be the most promising leads about SIDS seem to be emerging from research on breathing patterns during sleep,” Newsweek reported in its first issue of 1976, quoting Steinschneider and several followers.
“As a result of his experiences,” said Parents, “Dr. Steinschneider has developed a monitoring system for babies whose prolonged periods of apnea have led to what doctors call ‘a near-miss.’ This happens when a mother finds a baby seemingly lifeless in his crib and rushes him to the hospital emergency room.”
“The experiment is now in its third year and the results are indeed exciting,” Today’s Health proclaimed, early in an eight-page article featuring a huge picture of one of Steinschneider’s monitors, followed by an even bigger one of “the father of the apnea theory” himself turning the knobs on the wall-size equipment in his lab. “One hundred babies have been home-monitored; 40 are on monitors now; and not a single one of those in the study has been a victim of SIDS.”
The costar of the piece in Today’s Health was an Air-Shields apnea monitor, its wires circling the opening spread before moving down the page to the crib of the child over which it stood sentinel. In the monitor’s custody in this story, however, was not an infant but a toddler from a small town forty miles north of Syracuse. There was a picture of her. “She’s nearly three and bright as a button,” the caption said, “but since her birth, she has had to be wired to a black box each time she sleeps.” In this picture, she looked wary and forlorn, clutching her pet kitten. “The Black Box That Guards Debbie Whitney’s Life,” read the headline. The story opened dramatically:
Stridently, insistently, the noise shrills through the darkened farmhouse near Pulaski, New York. Beep … beep. It is 3 A.M., yet Beverly Whitney awakens immediately, flings back the blankets, and hurries the few steps to her daughter’s crib. She touches the tiny two-year-old body, expertly feeling for reassurance that Debbie’s chest is rising and falling in respiration—for the alarm in the night sounded a warning: Little Debbie Whitney has paused in her breathing, and adult aid may be necessary to get the rhythm started again. That aid can be as little as a gentle shake or tickle, yet for Debbie it could mean the difference between life and death. For Beverly Whitney, the midnight alarm is a familiar routine. Some nights she is called to her daughter’s bedside as often as 25 times. Yet she seldom complains …
Debbie, the baby Steinschneider had kept on a monitor so long that she now plugged it in herself, was apple-cheeked and gregarious—“she looks anything but unhealthy.” But as the sibling of a SIDS victim, she was being monitored because of “a growing suspicion that SIDS runs in families,” said the magazine. “One Syracuse area family has lost five children to SIDS.”
Beverly Whitney was one of the mothers Steinschneider was thinking about when he described life with a home monitor at the meeting in Toronto. She and her husband, Michael, did not know that their daughter’s breathing was in all likelihood no different than that of any other normal child. They took as their reality what Dr. Steinschneider told them it was. For Beverly in particular, his evangelism had profound effects. She had recently become president of the SIDS group he had organized at Upstate, and among the SIDS mothers she had encountered in the basement meeting room was the anonymous Mrs. H., the woman who had lost all her children. Beverly thought Waneta Hoyt was without a doubt the saddest person she’d ever met. For her and the others in the group, Waneta’s grief was an object lesson. It was one reason why Debbie Whitney remained on an infant apnea monitor as she approached her third birthday.
In Seattle, Abe Bergman and Bruce Beckwith were getting extremely worked up. This was not the way to pursue research, they and their partner George Ray agreed—not an “organized search for knowledge” with the checks and balances of sober peer review.
Some might have thought the Seattle group was simply jealous. In a few years, Steinschneider had far surpassed them in prominence, and not many national magazines were writing about the larynx spasm theory of SIDS. But the trio were comfortable with their motives. They were disturbed by what Bergman regarded as “the herd mentality in science” he saw unfolding across the horizon of SIDS research. It was as if the entire SIDS movement was overcome by a virulent strain of credulousness. He noted how Steinschneider and Naeye turned observations into presumptions, and how their status—and, more important, that of their theses—had been elevated by the implicit endorsement of the prestigious medical journals that published their work.
Bergman’s views had nothing to do with suspicion. He thought a lot of Steinschneider’s work was solid and provocative, and that his 1972 paper was very possibly a piece of the puzzle. “I admit that I tended to accept it uncritically,” he would later say. “Had I looked at the ages and circumstances of his cases more critically, I would have been more skeptical.” It was years before he acknowledged even to himself why he had not turned his normally discerning scientific eye on Steinschneider’s paper: “I was always worried we’d be discredited by cases like this.”
For his part, Beckwith had had misgivings about the cases behind Steinschneider’s theory from the beginning, and its increasing acceptance rekindled his concerns. But, like Bergman, he felt a deep emotional and political kinship with SIDS parents, so he looked for every way possible to ignore the tiny voice in his head that suggested he explore the cases more rigorously. Beckwith had performed eight hundred autopsies of SIDS babies by this point and talked to the parents of just about all of them. For him, the presumption of innocence was a moral obligation. To look more skeptically at Steinschneider’s paper would have been to abandon an ethic, and it wouldn’t have stopped with the H. family.
To keep that door closed, Beckwith even tricked himself, in a sense, into inventing a label to accommodate the occasionally bothersome cases of multiple SIDS in families that he felt were not actually consistent with the agreed-upon definition of SIDS. The vagueness of apnea helped. In medical argot it was a “nonspecific symptom,” so there were many ways to apply the term. “I said, ‘Al’s not looking at SIDS, he’s looking at Familial Recurrent Apnea,’ ” Beckwith recalled. “And we had several families in Seattle with multiple SIDS, and it was the same experience, where some of them were awake, some of them were more than two years old, but they died suddenly and unexpectedly. And I leaned over backward. I started with [Belfast epidemiologist Peter] Froggatt, who mentioned that there were reports of cyanotic spells and stuff, then I went to Steinschneider, and then I went to some of our Seattle cases. I would have to say that what I was wanting to call a disease—because I really hate to blame people—probably wasn’t, at least in the majority of instances. And I talked about this. I presented at several national meetings an entity, which thank God I never published, called Familial Recurrent Apnea. And I reckon I called up a few moms in Seattle during my twenty years there and said, ‘This death was not your fault,’ when she actually had done it. But I used to say I would rather miss ten homicides than falsely accuse one mother. I was on a natural disease bandwagon. There was always the possibility of a death from inflicted suffocation. But I had made a decision early on. I’m either going to be suspicious of them all, or not very suspicious.”
In the discreet culture of science and medicine, it was also not quite acceptable to raise that particular possibility. Even when Beckwith, a few years later, began hearing about a strange psychiatric disorder called Munchausen syndrome by proxy, and started entertaining the notion that it might have something to do with Steinschneider’s paper, he decided there was not much use in making a public spectacle of it. “I became convinced about Munchausen, and basically knew that’s what it was, but I didn’t figure there was a chance of proving it, and it wouldn’t do any good for Bruce Beckwith to start jumping on Al Steinschneider’s case.”
But that was years in the future. In 1975, it was just a puzzle with missing pieces. “This just didn’t smell like SIDS to me,” Beckwith said, “but it was exciting and clearly worth exploring.” He concluded that whatever the flaws of Steinschneider’s case reports or the deficiencies of his conclusions, he could at least be applauded for the soundness of his general line of inquiry, which Beckwith thought was more than could be said for most SIDS theorists. But while he liked the basic theoretical construct—apnea, after all, was just a stop in breathing, so why couldn’t it be caused by a sudden spasm of the larynx?—he detested the public response.
It was the monitors that had Beckwith and Bergman in a lather. Stories like the one about Debbie Whitney in Today’s Health made them cringe: families at the mercy of some electronic baby-sitter relentlessly reminding them of the precariousness of early life—of SIDS. They dreaded the specter of a stampede of hysterical parents and acquiescent pediatricians. There was Steinschneider in Syracuse, and now there was Dorothy Kelly starting a monitoring program at no less a place than Harvard. It seemed absurd to them, and yet entirely predictable, that the monitors could be on the verge of becoming a craze, a must-have for SIDS parents, when there was no evidence that they did anything but play havoc with the fragile psyches of vulnerable mothers and fathers.
Several companies had begun responding to Steinschneider’s call for a better monitor, and Bergman and Beckwith were already seeing the beginnings of the marketing: SIDS protectors, crib-death alarms—baby savers. “It was the false hope, the commercialization of it,” Bergman remembers. “We were getting calls from monitor purveyors,” Beckwith adds, “and we were worried that financial interests could harm the science.”
Among the pediatricians of America who shared this concern was Jerold Lucey, whose publication of Steinschneider’s paper had started it all. Despite his early excitement about Steinschneider’s theory, he thought the embryonic home monitor phenomenon might need to be nipped in the bud—or at least slowed down in order to let the science catch up. An editorial commentary by two of the most credible names in SIDS seemed to him the best way to do it.
At first, Bergman and Beckwith were reluctant to go public with their disagreement with Steinschneider, even if it was philosophical and not personal. But Lucey pressed them. Somebody had to do it, he believed.
In character and appearance, Bergman and Beckwith were something of an odd couple. Beckwith was tall, bearded, and mannerly, with an impish smile and speech that was full of whimsical cultivation. Bergman was half a foot shorter, with a boyish face and a mouth that roared. The pugnacious son of a Seattle luggage store owner, his ardor once reminded Steinschneider of Nikita Khrushchev, the way he would pound on the table when he had something important to say.
Bergman and Beckwith wrote the piece for Pediatrics together, and struggled to achieve the right tone. They agreed their commentary should come across not as an indictment of a person or even a theory, but of a mentality. George Ray signed on with them, and Lucey ran the commentary on the first page of his July 1975 issue, under the title “The Apnea Monitor Business.”
… The “crib death theory-of-the-month club” blazons forth with unremitting regularity. This usually takes the form of an “armchair investigator” propounding yet another explanation for SIDS to a naïve wire-service reporter on a dull news day. The resultant banner headlines in newspapers throughout the country regularly produce hundreds of frantic phone calls and letters to the National Foundation for Sudden Infant Death, as well as exhortations to practicing physicians to “do something.” … The Reemstma-Maloney Law should be borne in mind: “The public impact of instant medical reporting is related inversely to the intrinsic merit of the observation.”
One practice that threatens to become widespread in the absence of supporting scientific evidence is the use of electronic respiration monitors in the home to “prevent” SIDS. Some electronic manufacturers are already promoting their wares for this purpose, with justified anticipation of boundless profits. It is true that one of the promising areas of SIDS research involves the exploration of the possible relationship of “sleep apnea” to SIDS. The work is only in the beginning stages, however; to date such an association has not been demonstrated.
A related development is use of the term “aborted” or “near-miss” SIDS, for infants having unexpected apneic episodes. While there must be a reversible point in the pathologic spectrum of SIDS, there is now no way of identifying that point.… SIDS is now a definable entity; “near-miss” SIDS still is not. It is much preferable to admit our ignorance rather than to feign wisdom. Our chief concern is that, on the basis of preliminary and inconclusive evidence, the public will be deluged with information indicating that SIDS can be prevented through the use of home monitors. The resultant pressure on parents, pediatricians, and family physicians would be enormous. This pressure should be resisted.…
The physician or parent desperate to “do something” to prevent SIDS would do well to recall the harm done in the 1930s by thymic irradiation. This not only failed to prevent SIDS, but resulted in an epidemic of thyroid cancer. Let us wait until the evidence is in before rushing to the apnea monitor as a panacea for SIDS, lest we again risk significant harm to the patients and families we seek to serve.
Beckwith truly hadn’t seen the commentary as an attack on Steinschneider—“We were talking about the world’s reaction to Al, not Al himself”—but Bergman knew that’s just what it was, and that many people would read it that way. In the end, he didn’t much care. Bergman had recruited Steinschneider into the movement, had encouraged him, admired him, agreed with him. It was in good part Bergman’s politicking in Washington that had brought the money that was financing Steinschneider’s work. But he had watched him emerge with his 1972 paper implicitly hawking the pseudoscience of monitors, then declare at a meeting that SIDS rates had dropped in Syracuse because of them, and that was the beginning of their fallout. Bergman had stood up indignantly and said that it wasn’t true—that Steinschneider’s interpretation violated every principle of epidemiology. And Bergman sat down and thought, They used to call them snake-oil salesmen.
Vacationing on Cape Cod, Steinschneider took the latest issue of Pediatrics out of his briefcase and found the commentary staring up at him. He was stung by it—angered, he would later say, by its “misleading” tone. He didn’t respond; for a while, he stewed. But others did react, their counterattacks sometimes laid between the lines: Were the Seattle doctors actually calling Steinschneider an “armchair investigator”? Were they impugning his highly acclaimed work? Weren’t they just jealous of the attention Steinschneider’s theory was getting, at the expense of theirs? Warren Guntheroth saw in the commentary everything he had always disdained in his crosstown colleagues’ approach to SIDS. “Their party line was that SIDS couldn’t be prevented, and Abe was very aggressive about that,” Guntheroth said. “His view was, ‘Why should parents feel guilty?’ But the contradiction was that they were saying, ‘Why aren’t all you selfish people doing research?’ And we’d come in with research and they wouldn’t listen. I always thought parents’ feelings and support groups were important, but that idea got in the way of progress for children.” Guntheroth did not fear home monitors. After all, it was his idea, broached at the seminal moment of the 1969 meeting, though it wasn’t until four years later, after Steinschneider’s paper, that he sent a baby home with one. The child had been brought to him after an apparent apneic episode at home. “Will it happen again?” the mother had asked. Probably not, Guntheroth said. Probably not? responded the mother.
To Steinschneider’s rescue they came, none with more venom than Richard Naeye. He focused his wrath on Beckwith, his fellow pathologist and developing nemesis, sending the first of what would turn out to be a long series of letters—“ugly, vulgar, intense, personal letters,” Beckwith recalled. “I have a thick file of them. He and others perceived this as a direct attack on Steinschneider. It was my first experience with anger and hostility in the SIDS arena. It had really been a positive experience up until then.”
Beckwith did not shy away from the battle. While he was unwilling to challenge the essential data of Steinschneider’s theory—the deaths of the H. babies—he saw no reason not to openly protest Naeye’s more abstract laboratory observations. In a fundamental if less personal way, Beckwith was to Naeye what Bergman was to Steinschneider. He had introduced his fellow pathologist to SIDS by inviting him to a meeting and now wondered what he had wrought. As he read Naeye’s research and watched him at meetings, Beckwith began to suspect why his tissue markers weren’t being replicated. He thought Naeye’s science suffered from bias, and that it was important to start talking about his doubts because the findings were constantly being cited as evidence for the apnea theory of SIDS—and by extension, for the argument for home monitoring.
“I began saying, hey, are these really facts that are being presented or are they perceptions?” Beckwith said. “And at least they needed to be redone with different methods and by unbiased people with better defined cases and all that sort of thing.” Beckwith believed that Naeye’s method of counting cells in the pulmonary artery was improper, and that was one reason why the discoveries couldn’t be confirmed. “He responded to me that he had first done the study using planimetry”—the accepted way to measure blood vessels—“but didn’t mention it in The New England Journal of Medicine. He will twist the truth until it fits. He will keep doing the measurements until they fit.”
Not surprisingly, no one embraced and promoted Naeye and the tissue markers more passionately than Steinschneider. He hailed Naeye as a genius, one of the great visionaries of SIDS research. “Dick has the ability to take two pieces of a five-hundred-piece puzzle and tell you what the picture looks like,” he would say admiringly.
That was precisely Beckwith’s point when he took the podium as the keynote speaker at the annual convention of the National SIDS Foundation in New Orleans. “There are many problems with the tissue marker and chronic hypoxia story,” he declared, stunning many people in the audience. “The results are so important that they need much more work before they can be accepted. At the moment, I am unconvinced.” Eileen Hasselmeyer and Jehu Hunter were in the audience and Beckwith saw a look of distress on their faces. Naeye and Steinschneider stalked out of the room. “That was a very inappropriate talk,” Naeye snarled at Beckwith as they passed later in the hall.
Molly Valdes-Dapena, for seventeen years a member of the Tissue Committee of Saint Christopher’s Hospital for Children, was nowhere near ready to give up on any of Naeye’s seven markers. She listened to Beckwith’s speech in New Orleans, then went home to continue trying to replicate Naeye’s findings. Again she failed. She called Naeye to inquire about the confusing results. “He said he couldn’t prove how he did it,” she recalled. “Everything had been taken apart. He didn’t have the data anymore. ‘What about the technician who did it?’ ‘Oh, she quit.’ ” The frustration drove Valdes-Dapena to distraction. Yet, despite the disturbing implications of Naeye’s responses to the problems, confirming his discoveries would remain an intense preoccupation for years. “I almost turned my life into an obsession with tissue markers,” she would reflect one day.
Steinschneider took nearly a year to respond in print to the Bergman-Beckwith commentary in Pediatrics but made up for the delay with volume, submitting a piece that ran nearly three times the length of the original. He deflected the criticism with a shield of intricate SIDSspeak, a notable chunk of which was devoted to a heated attack on what he regarded as the Seattle group’s veiled advertisement for its own theory. “They appear to have allowed their personal involvements and commitments to obscure several important conceptual issues,” he wrote. He defended the use of monitors, eventually concluding his response in what had become typical fashion: “In SIDS, as well as in other medical problems, we fail in our responsibilities if we prejudge, respond in haste, and allow professional recommendations and utterances to be based on personal need rather than on reason supported by scientifically acquired information.”
For their “critical reading of the manuscript and numerous constructive suggestions,” Steinschneider thanked Eileen Hasselmeyer, his patron at NICHD, and Sydney Segal, who had helped approve his first big grant. Oddly, he had also asked Syracuse pediatrics chairman Frank Oski for his suggestions.
Averse to him from the start, for four years Oski had watched Steinschneider talk circles around people—parents, colleagues, reporters, bureaucrats from Bethesda—and had grown even more skeptical of his fervor. He concluded that Steinschneider was, as he later put it without even a pause of circumspection, “a charlatan,” a man more interested in promoting his apnea theory than in conducting serious research. Under other circumstances, Oski would have been pleased by the prestige brought to the department by a staff member’s success and celebrity. But not in this case. He was perplexed by the impact Steinschneider was having outside Syracuse. “The science escaped him,” Oski said. “He was a blowhard, an embarrassment. A malignant growth on the department.”
Steinschneider was of course conscious of the antipathy and had begun to recognize that his time in Syracuse was coming to an end. He had never made it to full professor, and as long as Oski was in charge, it was unlikely he ever would, no matter how many papers he published. He was tired of fighting for lab space and for his boss’s respect. By 1976, feeling on top of the SIDS world but unappreciated in his own department, Steinschneider was talking openly about leaving. Someday, he told Thelma Schneider, he would have his own SIDS institute. And it wouldn’t be in Syracuse.
When the producers of Marcus Welby, M.D. planned an episode about SIDS, they sent the script to Saul and Sylvia Goldberg for their review. Among the bags of mail the Goldbergs received over the years was a letter of support from Robert Redford’s wife, Lola. The Redfords had lost a child to SIDS. By the mid-1970s, the Goldbergs, a dozen years removed from their baby daughter’s death, were the last of the original activist parents still consumed by the cause on a daily basis.
In the summer of 1974, a SIDS activist named Rose Fleischman had invited the Goldbergs up to Syracuse. She’d gotten to know Al Steinschneider and wanted to bring them together. Saul and Sylvia were eager, too. At the 1969 meeting, he had been just one of the doctors they heard, and by the time he spoke, the fifteenth of sixteen researchers to present his data, they were bleary. But of course they knew all about him now. Steinschneider, in fact, had seen to that himself. He had called Saul the spring after his paper was published in Pediatrics and given him the highlights of his theory—“2 SIDS on monitors … test all newborns twice, pick up prolonged apnea, put on machine,” Saul jotted on the back of a pink message slip on May 2, 1973—and then sent them a reprint of the paper. Now, a year later, the Goldbergs packed their car and drove from Baltimore to upstate New York. It was not unusual for them to spend their vacations visiting SIDS people.
Steinschneider was not known among his colleagues in SIDS research as a man who was especially good with parents. He could mesmerize mothers and fathers whose babies he was monitoring, pulling them in with his intensity and authority and the fear he imparted; but when parents who were active in the SIDS movement encountered him in the cooler setting of their meetings, they often found him overbearing and unpleasant. Molly Dapena was among those who noticed the dynamic, and it reminded her of the delicate blend of science and sensitivity required of investigators who chose this particular field of medicine. Steinschneider didn’t have it, and he didn’t much care. He made no secret of his impatience with what he viewed as the parents-first perspective of the SIDS world. He saw the Goldbergs, though, in a different light. They were the original support group, but they also wanted, like him, to stop SIDS now.
Over dinner at Rose Fleischman’s house, the Goldbergs listened to Steinschneider hold forth on the future of apnea and monitoring, and on his hopes of taking the SIDS battle to higher planes. What was needed was money—not for more counseling programs, but for research and clinical programs to develop ways to prevent SIDS. Despite the recent success in Washington, the money couldn’t all come from there. The government was fickle, and sooner or later support for SIDS would yield to the next trendy cause.
The Goldbergs told Steinschneider how much money they had raised over the years. They talked about their long relationship with Russell Fisher. They listened to one another long into the night and found themselves to be simpatico. Saul and Sylvia were disarmed by Steinschneider’s emotional energy, a quality for which they themselves were well known. In a few months, Abe Bergman’s group would publish its protest of the monitoring idea, but Steinschneider made his theory entirely convincing to the Goldbergs, who had spent more than a decade looking for hope. “It was easy for us to understand,” Saul remembered. Some people thought monitoring meant a parent had the power over whether a baby lived or died, a direct contradiction of the SIDS parent’s mantra: There was nothing we could have done. But when Steinschneider said, “There is something you can do,” it had resonance for Saul and Sylvia. And the Goldbergs’ power with parents, their access to so many charitable hearts, had resonance for Steinschneider. When they invited him to Baltimore to be the guest speaker at the upcoming tenth anniversary dinner of the Guild for Infant Survival, he enthusiastically accepted.
A report of his talk later appeared in the guild’s quarterly newsletter: “If we look at our beliefs critically,” Dr. Steinschneider explained, “we will grow. Some things can easily become myths if not examined critically.… Much new material on SIDS is coming out in the press and in scientific journals. Some of it is valid, some of it myth.”
It was not too long after the beginning of his mutual courtship with the Goldbergs that Steinschneider got a call from Marvin Cornblath, the chairman of pediatrics at their hometown medical school, the University of Maryland in Baltimore.
Cornblath was a specialist in endocrinology and metabolism, but lately he had been thinking about politics and money. He was trying to come up with some creative ways to attract and spend research money in order to build up his department and raise its prestige. The obvious answer, he realized, was SIDS. SIDS was hot, especially in Baltimore. Just a block from the medical school was Russell Fisher. If it was possible for a medical examiner to specialize, Fisher did, and he was eager to collaborate with the medical school on SIDS projects. Forty-five minutes down Interstate 95 was Bethesda, headquarters of the NICHD. By now, the money for SIDS was pretty well gushing; there was absolutely no reason why the closest state university should not get its share. And there were the Goldbergs. Baltimore was the world headquarters of the International Guild for Infant Survival. The political impact of the parents’ movement was well demonstrated; being near one of the hubs couldn’t hurt.
A smattering of SIDS research was already underway in the Maryland pediatrics department, and a year before, the school had established a SIDS Center, primarily a counseling program for parents. It was Cornblath’s ambition to turn these humble beginnings into something grand. He would start, in fact, with a grand rounds. A medical school grand rounds is like a minisymposium, a gathering of faculty, residents, interns, and students to hear one speaker discuss one subject. It could be something as focused as a blood cell, as broad as an entire disease. At a party one night, Cornblath was talking about his idea with Stanford Friedman, a pediatrician who headed the SIDS Center and would later become president of the National SIDS Foundation. Cornblath was thinking about whom he should get to lead the grand rounds.
“Why not go for broke?” said Friedman. “Get Al Steinschneider. Get Dr. SIDS.”
Steinschneider came to Baltimore and delivered his stump speech on SIDS. And then, with Cornblath and a few others, he waxed ambitious about the future. His first grant was winding down, he said, and he was getting ready for the next one. He planned to acquire a very serious sum of money to continue his apnea work, many times the size of the $600,000 already extended him by the NICHD.
Cornblath thought Steinschneider was marvelous at the grand rounds, and even better in the more intimate encounter that followed. It wasn’t just the science to which he was drawn, but Steinschneider’s extravagant personality and his ambition. It was remarkable, Cornblath thought. Not often did you find such big thinking in a researcher, such certitude. He could imagine Steinschneider holding sway with the people in Bethesda. The Maryland medical school lived in the shadows of Johns Hopkins. Steinschneider seemed like just the sort of guy who could bring in a lot of grant money, and maybe narrow the gap a little. A few days later, Cornblath called him. Was he happy in Syracuse? Would he be interested in bringing his new grant to Baltimore? There was a full professorship in it for him and more: the chance to get in on the ground floor of a major SIDS research center. Cornblath was so taken by Steinschneider that he never even called Frank Oski.
For Steinschneider, Cornblath’s offer was more than a way out of Syracuse. Maryland could help give him the true power that he saw as his due. “He believed,” remembered Dr. Charlotte Catz, Eileen Hasselmeyer’s boss at the NICHD, “that the field was his.”
Twenty years after they’d arrived there for medical school, the Steinschneiders packed up everything they owned and left Syracuse. Their children, a son and a daughter, had grown up there, and now they were in college. Steinschneider was forty-eight years old, a star in his field. But as he said his good-byes around the pediatrics department of Upstate Medical Center and departed for Baltimore, he had the unmistakable aura of a man just getting started, a man who saw greatness within his reach.