One British pediatrician notwithstanding, it was commonly believed in America by 1982 that apnea monitors saved babies from dying of SIDS. It was a presumption that percolated up from the most basic of sources.
In Baltimore in 1980, Nancy Kercheval gave birth to a boy she and her husband named Nathaniel. He went directly from maternity to Steinschneider’s overheated sleep labs, where he spent two hours on a polygraph and, not surprisingly, had some apneic pauses. None exceeded eight seconds, but Kercheval was told that the pauses were too frequent—Nathaniel was a potential SIDS victim. “My reaction was shock,” she wrote when he was four months old and connected to a Healthdyne monitor. “I thought Nathaniel was a perfect baby. He had everything going for him when he was born.”
Kercheval happened to be a reporter for the Associated Press. Her thankful story of how Alfred Steinschneider and his Healthdyne monitors were making Nathaniel safe blinked onto the computer screens of editors in newsrooms everywhere in America, many of whom pushed the buttons that put it in front of their readers under headlines like “An Electronic Baby-sitter Wards off Crib Death.” “Every time I looked at my baby, I thought it might be the last time I would ever see him alive,” she wrote. “But now I’m confident things will be OK … Nathaniel is among the 10 percent of babies tested at the SIDS Institute who ‘flunked’ his sleep study test. So at the age of one month, Nathaniel became a bionic baby with brown and green wires dangling from the legs of his tiny outfits.”
By the early 1980s, as the monitoring phenomenon hit its stride, stories about mothers like Nancy Kercheval were everywhere, many of them in magazines aimed at women of childbearing age. The articles commonly noted that the current thinking about SIDS and monitoring had started with Steinschneider’s paper about the two babies with apnea who had died in upstate New York. (By this point, their three siblings were all but forgotten.) Few of the stories were burdened by the caution of earlier times. They were powerful advertisements for the monitoring industry. “I Saved My Baby from Crib Death” was the headline over an article in Redbook. A page-one story in The Washington Post reported that a monitor prescribed for a SIDS sibling by a Georgetown University doctor had “saved the baby’s life eight times.” And there was this in the National Enquirer: “My Baby Died 200 Times.” The monitors’ cultural certification seemed complete when Tyne Daly appeared in an episode of Quincy as a mother of newborn twins who lost one of her babies to SIDS and put the surviving one on a home apnea monitor.
It was the widespread perception that every time a monitor beeped a baby was at the precipice of death—another near-miss SIDS, or “near-myth SIDS,” as some skeptics preferred—that helped propagate the belief that sudden death could be predicted by prior events and that monitors could intervene. Even The New York Times, in a “Healthdyne Gains with Crib Monitor” business story, described babies as showing “warning signs” of SIDS that parents could recognize. The article was accompanied by a picture of a baby hooked to a Healthdyne monitor; the caption explained that his mother had gotten the monitor after noticing that he had “developed symptoms of Sudden Infant Death Syndrome” following a viral infection.
It was as if the symptoms were contagious. In New England, more than a few parents reading about the work of the Harvard team in The Boston Globe suddenly realized their babies had apnea and needed monitors. And more than a few of their pediatricians got the distinct impression from Kelly and Shannon that they were virtually committing malpractice if they did not refer these babies to Mass General for complete workups. Two rooms at the end of the pediatrics ward were reserved for—and nearly always filled with—“aborted SIDS cases,” as staff members referred to them. At the same time, pediatricians from around the country, confronting their own perplexing cases of “apnea,” were sending pneumogram tapes to Boston for analysis. Kelly and her staff put them through a $40,000 machine yielding a hard copy of the tracings, interpreted the results according to their own apnea protocols, then ruled on whether the baby in question was at risk of SIDS and needed to be put on a home monitor.
From its conception, the incongruity of the apnea theory was that it was so simple yet so vague. A decade into it, the near-miss concept further blurred the boundary of concern. In the climate of these years, whenever a baby seemed to be in some sort of distress, or maybe just looked “funny,” it was apt to be called apnea and sometimes a near-miss. By extension, the baby became absorbed into the SIDS world. Shannon and Kelly helped legitimize this assumption with a widely cited two-part paper in The New England Journal of Medicine in April 1982 that implicated apnea as the mechanism of some “near-SIDS”—and by inference linking the theoretical and very subjective near-SIDS with the real thing.
The ambiguity was a perpetual preoccupation among doctors. Even Steinschneider had publicly lamented that near-misses were often unreliably defined by a mother’s or father’s emotional perception that their child was in peril. It was a climate of fear that he himself had a large hand in creating, though he betrayed no evidence that he saw it this way. It would not surprise him, he had told his colleagues at the Baltimore conference, if a lot of babies made it into the near-miss statistics “when in fact no apnea, bradycardia, or life-threatening event had occurred.… It is at best potentially misleading when reporting that parental resuscitative intervention was ‘required’ when in actuality it was ‘received.’ ”
When he talked to reporters in these years, Steinschneider consistently took credit for revolutionizing SIDS by “discovering” that victims were born with a fatal abnormality. But along with Shannon and Kelly, he had also revolutionized it by leading countless numbers of parents to fear that their babies had this theoretical hidden abnormality. In Syracuse, where it all began, the effects were especially acute and long-term. When Nessa Vercillo sat down at her first meeting of the SIDS group Steinschneider had set up in Syracuse a decade earlier, she had the strange sensation that she had walked into the remnants of some sort of cult. Her baby son had recently died of SIDS, but she quickly realized this set her apart from the others. “I’m looking around, and there are seven women,” she remembers. “The most recent death was seven years ago. A couple of them had babies on monitors for two or three years. SIDS is apnea, they said. Like they were the same thing. They said, ‘Don’t worry, we can lend you a monitor when you have another baby. Do you know it can happen again? Your next baby can die. Dr. Steinschneider says it’s familial and the only way to save your baby is an apnea monitor.’ ”
The demand for monitors soared with the near-miss phenomenon. “The scene was this: The mother would say, ‘My baby stopped breathing, turned blue, and looked dead.’ But the baby’s normal. The mother would get into the SIDS research and come back roaring mad: Why wasn’t her baby being monitored?” The speaker is Dr. Jerold Lucey, editor of Pediatrics. “It jumped from a decent hypothesis to a religion. You either believed or you didn’t.” Inevitably, the anxiety spread to parents of perfectly healthy babies with no family history of SIDS or reports of prolonged apnea. They wanted monitors too. Some new mothers refused to leave the maternity ward without one. Many pediatricians who had resisted home monitoring in the late seventies now found this virtually impossible. It was easier to prescribe a monitor than to talk a parent out of it, especially now that the National SIDS Foundation—with Dorothy Kelly’s help—had persuaded Blue Cross—Blue Shield’s national medical advisory board to adopt a policy approving reimbursements for “sudden infant death syndrome monitors,” as the board referred to them in its statement. “We were backed into using them,” said Lucey. “You had salesmen pushing them, you had parents demanding them, you had fear of lawsuits. But there were never any randomized control trials because the believers would say it’s immoral to do a randomized trial. Meanwhile, the rates of SIDS didn’t go down. It was a tremendous waste of effort.”
It was also not necessarily harmless medicine. Putting a baby on a monitor often meant shrouding a house in fear and gloom—a kind of death watch. Inevitably, a subculture formed out of the experience, and a support network formed around the subculture. This tended to reinforce the fear. In 1982, a committee of the SIDS Foundation, under a “grant” from Healthdyne, produced a 79-page handbook “for the parents of infants who are being monitored due to cardio-respiratory abnormalities.” With Kelly as its chairman and catalyst, the committee included Saul Goldberg and former SIDS Foundation executive director Carolyn Szybist, along with the president of a monitor dealership, a professor of pediatrics from Stanford, and a nurse who was monitoring her own twins. Healthdyne published and distributed the book with the endorsement of the foundation and an array of eminent doctors who served on a separate advisory panel.
The handbook advised new monitor parents to expect a period of strain, “including a lack of sleep and associated exhaustion, uncommon irritability with your spouse and children … constant hovering over the baby, a reluctance to disconnect the monitor at any time, and a growing feeling of terminal cabin fever. Although not pleasant, these reactions are normal and will pass. Studies have shown that home monitoring can either increase family friction or help bring the family closer together.” Advice ranged from how to perform CPR to how to arrange a nursery around a monitor. There were monitor baby clothing suggestions, and a section urging monitor parents to help others by volunteering at their local apnea centers, or at “your local monitor parents association.” A chapter on how to select a monitor featured two full-page pictures of the latest Healthdyne equipment.
Despite the warnings about inconvenience and stress, parents were urged to view the monitor experience as an obligation. “By assuming this responsibility, you are offering your baby a chance for a long and normal life. Although it will be trying, you are doing all that is possible.” With that subtly grim introduction, the book then posed the big question: “Will My Baby Die?” The answer implied that Steinschneider’s theory had been proven: “Since a cure for infant apnea has not yet been found, home monitoring must be defined as a ‘tool.’ Unfortunately no tool can guarantee success. Although this may seem pessimistic, the facts are encouraging. Survival rates among monitored babies are nearly 95 percent. This is significantly higher than has been experienced by ‘at-risk’ infants who have not been subject to monitoring.” The book never mentioned that there was no valid research to back up this statement. It wasn’t until page 70 that it said that SIDS “is presently neither predictable nor preventable.”
The book closed with a section of sample form letters that monitor parents could have their doctors sign in order to receive special attention to their plight. Any parent reading these letters would have to assume that tragedy could strike at any moment and that it was up to them to prevent the unpreventable. The letter requesting insurance coverage stated that the equipment—“in particular, a Healthdyne Infant Monitor, prescribed for its proven reliability and simplicity of operation”—was “necessary for treatment of an illness.” Another letter could be used to alert the local rescue squad that the baby’s parents, although trained in CPR, might be calling for help. “If this occurs, immediate response will be crucial. Please advise your crews and discuss how best you can reach their home in an emergency situation.”
Perhaps no family in America symbolized the way the monitoring phenomenon preyed on vulnerable parents more than the Bittners, Donna and Richard, a suburban New York couple whose triplets were born prematurely and lived their first two months in the hospital. They went home healthy and thriving, but a week later their mother thought one of the babies wasn’t breathing, and brought her in to be checked. The baby seemed fine, but the family’s neonatologist thought it wise to test the baby, and her sisters, for apnea. He ordered pneumograms for all the babies, and sent the tapes to Kelly’s lab in Boston for analysis. The news came back: Two of the pneumograms were “abnormal.” Monitors were recommended for all three. When the family’s insurance company failed to promptly approve the equipment, the babies’ great-grandmother decided to take some action. She wrote a letter and sent it straight to the top. A few days later, a man appeared at the Bittners’ front door. He said he was from the White House. The President of the United States wanted to help.
That day, the triplets were attached to a trio of monitors at their crib sides, courtesy of Ronald Reagan and the local county government. But the monitors always seemed to be beeping, which was hard on the babies’ parents, even if the cause was usually something simple like a loose lead. Seeing the stress, their great-grandmother, who was now convinced that the monitors were keeping the triplets alive, decided to write another letter to the President: “In the event two or three monitors go off at the same time, my granddaughter has to make a life-and-death decision as to which child lives and which dies. A horrible decision for a mother to make. I would be forever grateful for your help in this matter.” The White House arranged for the local authorities to send over a housekeeper and a night nurse. It wasn’t long before the next knock on the door was from a reporter.
“Constance, Crystal, and Christina were born suffering from Sudden Infant Death Syndrome,” a story in their local newspaper explained bleakly, “a condition that causes a potentially fatal lapse in breathing.” The reporter called the White House for comment. “The President and First Lady were very concerned,” somebody in the press office reported. TV crews from New York soon followed, and stories appeared in Reader’s Digest and the National Enquirer, among others. Somebody sent the Bittners a story about the triplets from an Italian newspaper. Meanwhile, the couple always kept a bag packed, and the local emergency squad tacked a layout of their house to its bulletin board. The triplets remained on the monitors until they were a year old. Their first birthday party was a major media event. Their parents’ sigh of relief could have blown out the birthday candles from forty paces.
Stories of people with “apneic” babies and modest means became a staple of local newspapers. “A wealthy businessman read the story about the five-month-old this week,” read one in Newsday, “and anonymously donated $2,200 to buy the struggling family an electronic monitor that beeps when baby Nicole, afflicted by a mysterious illness, stops breathing.” Nicole had been using a monitor on loan from New York’s Flushing Hospital, which had set up a bustling apnea program using Mass General as its model. The hospital needed Nicole’s monitor back for another baby. While waiting for the donated machine, her mother called 911 in a panic. Nicole had stopped breathing for “nearly a minute,” she reported. “I can’t take this anymore,” she said, head in hand, tears streaming down her face, as the police whisked the baby to the hospital. “Pray to Saint Luke!” the baby’s great-grandmother shouted amid the tumult. The baby was fine, breathing on her own. Her mother wanted to help others. She established the Nicole Near-Miss Foundation.
Meanwhile, apnea centers sprouted like 7-Elevens as hospitals across the country scrambled to start up their own programs. “Why? Because you’ve got to have a program,” remarked one New York neonatologist who found himself flying to Boston one spring to take Dorothy Kelly’s two-day course in how to run an apnea center. He and the twenty-five other doctors and administrators in his class left with a pile of information that included Mass General’s detailed pricing guidelines. It was a laundry list of tests and charges—everything from CAT scans to lumbar punctures to barium swallows—that moved him to remark to himself, “Well, now I know how to run an apnea program. It’s a billing factory.” Some time later, when he asked a clinical researcher who ran a major monitoring program in Philadelphia, “Do you really believe in this stuff?” the doctor shrugged and said, “It pays my way.”
From California, Joan Hodgman, Kelly’s chief adversary, looked upon the developments with increasing dismay. She found it infuriating that Kelly drew so much of her influence from the mere fact that she was from Harvard. It bestowed inordinate credibility on someone whose work Hodgman and some others judged maddeningly simplistic. “Dorothy is a monitoring nut but she isn’t really scientific,” Hodgman would say years later, still in the present tense. “She doesn’t evaluate what she is doing, and her stuff spawned the whole entrepreneurial thing.”
The “entrepreneurial thing” held special appeal to the administrators of some hospitals who defined a good clinical program as a clinical program that turned a profit. American pediatrics, like medicine generally, was finding itself subject to a social and economic agenda, not a medical or scientific one. It was a remarkable turn of events to doctors such as John Kattwinkel, a SIDS specialist at the University of Virginia who was a member of the Academy of Pediatrics task force on prolonged apnea. “Every medical school had some version of an apnea center,” he said. “Our state health department was buying these monitors because they felt they had to.”
It could not have happened without the salesmen. Just as the lawyer from Arizona had predicted in Toronto in 1974, they were going door to door selling SIDS prevention. “We put our salespeople in front of the customer,” Pete Petit explained to The New York Times early in 1983, an oblique reference to the doctors whose patronage his company could not do without. “We try to educate people in the field because the monitors are an emerging healthcare product.”
The strategy paid off. With the help of Kelly, Steinschneider, and a few other prominent apnea adherents, Healthdyne enjoyed remarkable influence in the medical community, and sales climbed as a result. In the package of information Kelly distributed to doctors who came to Mass General for her apnea course was a six-page paper that she and two other prominent doctors—one employed by the National Institutes of Health—developed under another “grant” from Healthdyne: guidelines for physicians encountering babies who might need home monitoring. More information could be obtained by contacting Healthdyne, it noted. “Healthdyne was teaching doctors the risk factors,” recalls onetime executive Steve Combs. “Pete himself was spending a lot of time on the road, meeting with pediatricians and neonatologists. He would tell them how SIDS was the leading killer of babies, but there was something that could be done about it.”
From Petit, the doctors who were often his ambivalent middlemen also learned a basic lesson of capitalism. “Doctors may use it just to be safe,” a neonatologist in Petit’s hometown, Saul Adler, observed at the time, conceding with some sheepishness that he was one of those doctors. “That’s bad for health-care costs, but good for Healthdyne stockholders.” More than a few physicians realized they were helping Healthdyne dig a gold mine. “Other companies sent a free sample or a pen,” remembered the New York neonatologist. “Healthdyne sent a prospectus.” The doctor respected the ethical constraints on his own stock investments, but advised his friends and relatives: Buy Healthdyne, quick.
It was excellent advice. By the end of 1982—the year Shannon and Kelly validated the concept of near-miss SIDS in The New England Journal of Medicine and the eminent doctors and SIDS activists produced the handbooks that were subtle promotions for Healthdyne and the monitoring concept in general—more than ten thousand babies a year were on home monitors in America. Ninety percent of them were Healthdyne monitors. Petit’s company was thriving and diversifying; it was now also selling a line of hospital life-support and monitoring equipment, products acquired from other companies with the profits from monitor sales and the proceeds of the first Wall Street offering. Healthdyne stock was still climbing, a red-hot company with a virtual monopoly of a burgeoning field. A few weeks before the international SIDS meeting it helped sponsor in Baltimore, the company completed a two-for-one stock split. Two months later it had its second public offering, and ten months later, a third. The stock, which had opened at $17 a share only eighteen months before, was trading at $41, giving some of Petit’s early private investors from the 1970s a 7,000 percent return on their money. Petit came to New York to sell his company to Wall Street. Over lunch, he told analysts how it all started with his grief over the death of his son, how he was realizing his dream of saving babies, and how business was only going to get better. At the close of the third offering, he had $74 million on his desk to play with.
By the end of 1983, just a few months after the stock offerings, Healthdyne had annual sales of $133 million and the title to no fewer than seventeen medical supply companies it had swallowed up during a sixteen-month buying binge. The acquisitions—a company a month—included the takeover of Healthdyne’s hapless competitor, Air-Shields, the company Steinschneider had been unable to coax into the home apnea market in the mid-seventies. Petit had started out marketing the apnea monitors through reluctant independent distributors. Now, his company owned many of the distributors, and the apnea monitor business was growing at the rate of 70 percent a year. A few new competitors struggled to get into the market, but they were far behind Healthdyne. In less than a decade, Petit’s business had gone from the edge of bankruptcy to twenty-fourth on Inc. magazine’s list of the country’s top one hundred companies. With the company now selling dozens of products made possible by the success of the apnea monitors, Healthdyne’s payroll swelled to 2,500 people working in manufacturing plants and home-care service centers throughout the country and in Europe. Petit couldn’t see around the corner, but it surely didn’t occur to him that once he made the turn he would find anything but a boundless vista of righteous profits.
The paradox, and it would have tumultuous effects, was that the monitor market was exploding just as the infatuation with apnea was beginning to subside in the SIDS research community. Steinschneider’s failure in Baltimore, coupled with David Southall’s dramatic results in London, marked the turning point. It wasn’t that apnea didn’t exist, or that monitors were worthless. Premature babies and those few full-term infants with documented, severe apnea could benefit from monitors. But the link between apnea and death had not been confirmed—indeed, it had been discredited. The simplicity of the hypothesis had always been one of its most appealing features. Now, it seemed to an increasing number of people an emperor without clothes.
But it was too late. The idea hatched by Waneta Hoyt one day in 1970 was now a part of life. A decade later, people were clamoring for these electronic boxes, mesmerized by their magical, life-affirming wires. In fact, if one were to draw a graph charting the enthusiasm for the apnea theory of SIDS among medical scientists, and for the rest of the world’s devotion to the monitoring idea, this is how it would look: The two lines would climb together steadily from the mid-1970s until about 1982, then split and part company forever, the theory flattening and ultimately going south, the monitors reaching for the stars. Monitoring had come with Steinschneider’s hypothesis, but now it seemed as though the theory existed only to justify their use.
In Boston, Dotty Kelly was starting to take personal umbrage with the apnea- and monitor-bashing that was just becoming safe. “As far as I’m concerned, these children have a disease,” she said with some annoyance to a reporter from Newsday who asked her about the doubts raised by Southall. “And either they can be monitored for less money at home, or in the hospital at a cost of five hundred dollars a day. If the long-term effect is that we decrease SIDS, that’s nice.” Richard Naeye wondered if Southall’s results were different from those in the United States “because they manage pregnancy differently in Britain.” For now, he thought there was no question what to do: “We should continue monitoring.”
With the apnea theory under siege, its doubters coming out of the bushes, the believers digging trenches, some parents’ groups against monitoring and others in favor, pediatricians and veterans of the long struggle against SIDS could see the unfolding specter of civil war. “The science world just went too far with apnea,” reflected Bruce Beckwith. “They put all the bucks into that, they put in all this energy, and it was emotional energy. You get parent advocacy groups out there, you get Steinschneider’s traveling circus, you get big grant money, big neonatal research centers going, a lot of politics and a lot of parents and a lot of money, and it becomes intensely emotional. The whole SIDS scene changed from the rather benevolent, positive approach of the early days to one where it was just a rat’s nest of wild-eyed people who were arming themselves in the different camps. It got destructive, and I think it retarded other avenues of SIDS research for a decade.”
Thus, the stage was set for battle. And cast across the developing fray was the shadow of Alfred Steinschneider. Confronting the reality that the field was no longer his even as his ideas remained at its core, Steinschneider was making new plans with old notions. Defiantly, and with some start-up money from Healthdyne, he was on his own.
Two-seventy-five Carpenter Avenue was a nondescript office building on the north side of Atlanta, a few miles from Healthdyne’s headquarters in Marietta, a world very different from the one Steinschneider had left behind. He relished the fresh start, but brought his sales pitch from Baltimore essentially intact. A breakthrough was just around the corner. Money was the key. He set up the National Sudden Infant Death Syndrome Institute (it would later become the American SIDS Institute) as a private, nonprofit foundation, listing himself as director and president. Steve Weinstein followed him to Atlanta after the “Baltimore fiasco,” as he put it, and was also listed as a member of the board when Steinschneider’s lawyer drew up the incorporation papers. A third director would be Scott James, the pediatrician who had helped Petit put the first monitor idea on paper back in 1970.
Steinschneider’s plan was a version of what he had built in Maryland. The institute would be a SIDS research clinic, focusing on apnea and home monitoring. Money would come, he hoped, from federal grants, private donations, and from the fees he would charge parents for evaluating and monitoring their babies. On the board of directors would be corporate and civic movers who could run the fund-raising machine.
After 1982, Steinschneider wisely realized that no federal agency would fund more of the same kind of research he had conducted in Baltimore. But it did not stop him from thinking big. Only now he was thinking less about the general population of babies and more about a specific segment: subsequent siblings of SIDS victims. Studying them was a way in the back door: He intended to show that subsequent siblings were at increased risk of SIDS because, like their dead brothers and sisters, they were at increased risk of apnea. To fulfill his new research agenda, Steinschneider needed to stir up interest and exposure all over again. Georgia was new territory. Hoping for referrals, he sent letters of introduction to family doctors, pediatricians, and obstetricians throughout the state, enclosing a recent article he’d written with Weinstein—“Prolonged infantile apnea: Diagnostic and therapeutic dilemma”—that had appeared in an issue of the Journal of Respiratory Disease.
The title was an apt description of his frustrations. After ten years of trying, he had been unable to make his formulas work. But he intended to pursue the elusive apnea theory the way he always had, even if his two leading allies were now trying to persuade him to reconsider. It was Steinschneider’s innovative calculations that had first excited Warren Guntheroth when he peer-reviewed the 1972 paper for Pediatrics. But while he still believed in the essence of the theory, Guntheroth told Steinschneider that he ought to take a new approach. “The apnea index didn’t turn out to be good,” Guntheroth later said, “because short pauses are very common, and when you’re in REM sleep you get them, lots of them. Steinschneider used a definition so short that anytime you went into REM sleep you’d have them. The concept that he could predict [death] was not good. The apnea density idea was fallacious. It was too normal. I told him to take it out. It’s crucial in science to be able to look at what you’ve done and say it’s wrong. He is not given to second thoughts.”
Dotty Kelly also told Steinschneider she thought his methods were flawed. She respected his work, but felt the heated labs skewed his data. She thought it was not the way to understand normal breathing patterns for healthy babies. “I said many times, ‘Al, all the work you’re doing is great, but I can’t do it because you’re doing it at ninety degrees. It’s not a normal environment.’ ” She was convinced the pneumogram was the way to go. “He never did publish any normal data.”
And he never stopped heating his labs. When he explained why over the years, Steinschneider tended not to give the same answer twice. In 1975, he had told Today’s Health that he heated the lab in Syracuse to encourage REM sleep, which was a roundabout way of saying he wanted to encourage apnea. He once told Kelly it was because he often tested premature babies who were used to high-temperature Isolettes and he didn’t want to jar their delicate systems into hypothermia. This didn’t explain why he did it with full-term babies. Still later, during an explanation of his system of “teasing out” apnea in order to compare the normal to the abnormal, he offered the authors this piece of interior logic: “There was an argument for natural conditions. That bothered me. Because babies didn’t die under natural conditions. I didn’t believe the day they died was the same as the day they didn’t die. If I tell you on Monday, Tuesday, and Wednesday the baby’s alive, and on Thursday the baby’s dead, maybe something was different about Thursday.” (Whether it is a mark of how little the data that gave birth to the leading theory of the day were scrutinized, or of how Steinschneider managed to keep his methods obscured, it is also true that many of his most prominent colleagues in SIDS—Marie Valdes-Dapena, Bruce Beckwith, and Abe Bergman among them—never knew that he heated his labs. “He does?” Beckwith said, nearly thirty years after first meeting Steinschneider. “That’s amazing. It could have modified his results.”)
In fact, using heat to draw out something hidden might be an effective tool of laboratory investigation. The problem, as it had been since the beginning, was that Steinschneider used it clinically—the clinic was his laboratory, and the laboratory his clinic—to come to theoretical conclusions about real babies with nervous parents. Now, he would bring his ideas to the parents of Atlanta. On some, the effects of his obsession would be painful.
Soon after Steinschneider arrived in town, Scott James introduced him to Saul Adler, the neonatologist who ran a small monitoring program at Northside Hospital. Adler welcomed Steinschneider to Atlanta and said he’d be glad to work with him.
“You don’t understand,” Steinschneider told him. “I’m taking over monitoring in Atlanta. That’s why I came here. We are taking over your program.”
He was going to do it with Pete Petit’s full support. Besides setting up Steinschneider’s new suite of offices, Healthdyne allowed Steinschneider virtually free rein of its plant. “They’d give him free monitors and he’d rent them out,” recalled Barbara Davis Bokor, a Healthdyne clinical support specialist. Saul Adler remarked to his colleagues: “He’s started a ‘nonprofit’ private practice and people donate money. I guess it’s legal.”
Steinschneider became the talk of the Atlanta pediatric community. “Al, you know you’re very controversial,” Bokor told him one day.
“I’d like to call it provocative,” he replied.
In Atlanta, as he had been in Baltimore, Steve Weinstein was Steinschneider’s aide-de-camp and most tireless apostle. “Nobody understood SIDS like Al,” he said. Weinstein began traveling the Southeast, selling monitoring and looking for babies to prove the thesis. “I was plucking from all over Georgia, Tennessee, Alabama. I was looking to get on TV.”
Neither Steinschneider nor Weinstein saw their financial relationship with Healthdyne—indeed their dependence on Pete Petit—as a problem. The goal was saving babies. So what if Healthdyne was supporting their efforts? They were not stockholders. In fact, they had discussed that very issue. It would be unethical to have a personal interest in the fortunes of Healthdyne, they had decided.
Others did see a problem: Steinschneider was trying to prove the apnea theory, and Healthdyne was selling apnea monitors. He was trying to prove subsequent siblings were at risk. Selling monitors to their parents could not even be considered selling; it was too easy. People didn’t know the precise details—whether he had a personal stake in the sale of monitors, or if it was just a wealthy research patron he saw in Pete Petit—but it almost didn’t matter. In science, any alliance between research and commercial enterprise is delicate terrain, and perception can be everything. “He went with a company,” Virginia’s John Kattwinkel said. “He was selling monitors.”
His bias was by now in plain sight. At meetings, fellow researchers heard Steinschneider’s performances as a song that kept repeating itself, and veterans came to view questioning him a futile exercise. Ehud Krongrad, a Columbia University pediatric cardiologist who had started monitoring babies after he read Steinschneider’s paper in 1972, approached him at a meeting in Baltimore years later to discuss his doubts about apnea. “He got angry and shouted,” Krongrad recalled. “You couldn’t discuss science in a logical way.” After Baltimore, Steinschneider became so routinely furious when others in the field disagreed with him that many stopped bothering to challenge him at meetings. Ultimately, his adamance led them to omit him from meetings entirely. He was such a fanatic about apnea and monitoring, some thought, that he might as well be on the Healthdyne payroll.
His relationship with Healthdyne did not stop Steinschneider from seeking federal grants to continue what he saw as the intellectually honest work he had been conducting for thirty years. With the pipeline from the NICHD dried up, he planned to seek his next grant from the Office of Maternal and Child Health, an arm of the National Institutes of Health that was best known in the SIDS world for running the federal government’s multimillion-dollar parent counseling and information programs. As an agency primarily involved in clinical programs, MCH didn’t have anywhere near the research budget NICHD did. But what it had, Steinschneider was confident, he could get.
Steinschneider had barely set up shop in Atlanta before he decided to expand his operation into enemy territory, as it were. Monitoring had taken off in the east, but the west was still wide-open territory. As a phenomenon, apnea monitoring was heavily influenced by the eastern roots of its most prominent proponents, while the leading lights of SIDS in the west, Abe Bergman and Bruce Beckwith, had fought publicly against it. Now Steinschneider was about to launch an incursion into their domain. He had found an enthusiastic ally in Portland, Oregon.
Janie Cram was one of the most remarked-upon SIDS parents in the country. A fiery woman, she had lost a baby two decades before but had never stopped grieving. Her Oregon license plate read SIDS, and when SIDS parents met her for the first time, they often wondered what had hit them. “When my baby died, she made me feel like I was joining a club,” one mother commented. Cram had founded the Oregon SIDS Center, and when she heard that Steinschneider was looking for a second home in the west—that he was now concentrating his research on siblings of SIDS victims—she tried to woo him to Portland.
It wasn’t a tough sell. Steinschneider saw in Cram the kind of champion he would need as he tried to establish an outpost in the Pacific Northwest. Oregon would be a challenge, but it was also a fine opportunity. The state had the fourth highest SIDS rate in the country, and no one was doing any serious monitoring of babies. Janie Cram enthusiastically agreed to run the clinic of his new Western SIDS Institute. She quit her job as the Oregon director of the SIDS information and counseling service run by the Office of Maternal and Child Health. Her boss in Bethesda, Geraldine Norris, was not displeased. When she hired Cram, it was obvious to Norris that she had given her the job of her dreams, but she came to believe that Cram was much too personally involved. Instead of objective compassion and administrative skill, Norris felt, Cram brought a torrent of emotion and her own personal views about SIDS, dumping them on her clients. She thought Cram and Steinschneider would make quite a team.
On a spring day in 1984, broadcast crews and newspaper reporters gathered outside Kam House, an historic Victorian home in the center of Portland that Steinschneider had rented for his new operation. An infant attached to a monitor was on hand for the event, and Oregon’s Senator Mark Hatfield cut the ribbon. Steinschneider was all over the local news that night: the doctor who would save Portland’s babies from SIDS.
To oversee the medical operations of the Portland clinic, Steinschneider recruited a young neonatologist from the University of Michigan named Raul Benagale. Benagale had no particular expertise in SIDS before his move to the Northwest, but Steinschneider described his theories and dictated the protocols for testing subsequent SIDS siblings. There was no federal research support yet, Steinschneider told him, but it would be just a matter of time.
Benagale began testing babies while Cram counseled their parents, but he realized soon that he’d signed on to a shoestring operation. Steinschneider didn’t have the proper insurance coverage or a trained support staff. There were weeks when Benagale’s paycheck didn’t show up. Steinschneider, meanwhile, would arrive in town once every few months and check into the plush Portland Inn, his lodging donated by the hotel, his meals and transportation often picked up by the small staff at the clinic. Benagale quit in less than a year. Steinschneider replaced him with John Schilke, a doctor from Clackamas County, a mountainous region southeast of Portland. Schilke agreed to come to Portland once a week to test babies whose siblings had died of SIDS.
By the summer of 1985, Steinschneider was just about back on his feet after Baltimore. Steve Weinstein had decided he was ready for something new and had left to go back to school to learn pediatric neurology, a decision Steinschneider took personally. It caused a rift that would last years. On the other hand, his new fund-raising operations were up and running in Atlanta and Portland, and in August, a grant committee at Maternal and Child Health approved his proposal to study four hundred subsequent siblings of SIDS babies, at a cost of half a million dollars over five years. The risk of babies born into SIDS families was a hotly debated question, and the members of the grant committee, anxious for some research on it, saw their way past Steinschneider’s known scientific bias and his financial dependence on a company with a vested interest in the results. That Steinschneider’s goal was to prove that subsequent siblings were at greater risk of death because they were at greater risk of apnea did not preoccupy them either.
Steinschneider hired a publicist to spread word of the grant, which would fund research at the Institute’s two “campuses” in Atlanta and Portland, in the words of one press release. A reporter in the Atlanta bureau of the Associated Press asked Steinschneider what he hoped to find with his new grant. He wanted to develop a way of predicting SIDS, Steinschneider told him. In Portland, a lot of people thought he already had done that. “What we have to move in the direction of is a means of identifying babies at low risk who are really at high risk,” Steinschneider said enigmatically. “We’ve got to come up with some sort of test.”
In addition to the MCH grant, money flowed in to Steinschneider from some of the old sources. Ben Vereen raised money for the American SIDS Institute, as he had for the institute in Maryland. His agent Pamela Cooper’s other major client, Dionne Warwick, also took up Steinschneider’s cause. She recorded a touching song, “The Promise of Life,” and came to Atlanta to host a fund-raising concert for the institute at the Fox Theatre.
In Atlanta and Portland, as he had in Baltimore, Steinschneider surrounded himself with a legion of believers, SIDS parents and civic activists who felt they were on an important mission, led by the “world renowned authority on SIDS,” as Steinschneider was described on the institute’s promotional material. In Portland, there were fund-raising events just about every weekend: golf tournaments, bowl-a-thons, anything that could possibly bring attention and money. One couple sponsored a twenty-four-hour marathon in the name of their daughter, a SIDS victim. Megan’s Run brought in $40,000 the first year. There was no question among Steinschneider’s staff in Portland that he and Healthdyne had a thriving symbiotic relationship. Petit donated a $25,000 instrument that read monitor tapes, and at a later point when money became short and salaries went unpaid, the paychecks that finally came were from Healthdyne. “Whenever Al was in trouble, Pete was there,” said Sherry Alexander, a monitor parent who became the Western SIDS Institute’s assistant director.
Because the research emphasis was on subsequent siblings, and because Janie Cram was in charge, Kam House became a kind of haven for SIDS parents, a center of grief, fear, and fund-raising. Parents who had lost a baby to SIDS would have their newborns tested and sent home with a Healthdyne monitor. Cram led the counseling groups, heart-wrenching sessions that Steinschneider, when he was visiting from Atlanta, avoided. Many parents found this strange, though Cram recognized it as a mark of his ultimate interest. “He never intended to be anyone’s guru,” she remarked. “He is not an advocate for the parents, but for the babies.”
Two subsequent siblings tested at the Portland clinic went on to die. The first time, John Schilke immediately called Steinschneider in Atlanta to tell him about it. Was the baby on a monitor? Steinschneider asked frantically. “Yes,” Schilke said.
Steinschneider was on the next plane to Portland. Maybe this was it: the first death caught on paper. A subsequent sib. Maybe the tape would tell, for the first time, how and why a baby had died—never mind the question of why the monitor had not saved him. But when Steinschneider got to Portland, Schilke had bad news. Apparently, there had been a malfunction. They could find no recordings. Steinschneider was devastated.
The other death was equally unrevealing—or perhaps not. The baby had not been on a monitor when she died. Later, there came a call from an investigator. Schilke and Steinschneider said it wasn’t suspicious, but the authorities disagreed. They suspected the woman had murdered her baby.