Nineteen eighty-two brought Steinschneider trouble in Baltimore. In some ways, it was the mirror image of his last year in Syracuse. Marvin Cornblath, who had promised and given him the world, had been replaced as Maryland pediatrics chairman by a professor from Duke University named David Lang. Lang was Frank Oski all over again, and by 1982, he had had enough. “He was demanding, cocksure,” Lang remembers. “He thought he was the answer to SIDS.”
Meanwhile, the SIDS Institute was running into financial problems. Steinschneider had insisted on overseeing patient accounts for the clinical unit, and he proved a less than skillful bill collector. Expenses were exceeding income by $10,000 a month, and Lang had to take out loans from the dean’s office to keep the institute going. The university chancellor wrote to board chairman Sigmund Hyman that this couldn’t go on for long.
But it was the least of Steinschneider’s troubles. To realize his plans to expand the institute he needed another multimillion-dollar grant from the NICHD when the current one ran its course. With Tyson Tildon looking on warily, he put together a proposal to continue his quest to discover a way to predict and prevent SIDS. But the disappointing results of Project A made it a tough sell, even for him. The grant committee arrived in Baltimore for its site visit in a decidedly different mood from the last time; not even Eileen Hasselmeyer could help him now. Steinschneider knew what was in store—there had already been several heated telephone conversations—and he came armed for battle, his troops behind him. Sydney Segal tried to keep the peace but the room grew as hot as one of Steinschneider’s sleep labs. The message from the government was plain: The apnea project was a failure, and we’re not here to sign another check. If you want to stay in the game, we’re glad to have you. But you’ll need to change your direction and start asking some new questions. Otherwise, you’re done. “He didn’t take it well,” Segal remembers. “He threatened to withdraw the whole application.” It was a hollow threat. The agency had little to show for its millions of dollars. Steinschneider could resubmit the application or not. It was his choice. The committee went home to Bethesda, and Steinschneider and Weinstein fumed. “They brought in the biggest bunch of Mickey Mouse investigators,” Weinstein would later say. “They had no idea what Al was doing, what his vision was.”
Steinschneider began thinking about his options. He was not getting what he wanted, the SIDS Institute was in trouble, and his relations with both the university and the government were crumbling. With that as the backdrop, he turned his attention to the event he’d planned for more than a year. He expected it to be the high moment of his career. What he didn’t see was that it wasn’t only in Baltimore that his fragile construct was beginning to come apart.
Guests of Alfred Steinschneider, Lady Limerick, and Parker H. Petit, fifty-nine of the world’s preeminent SIDS researchers began streaming into Baltimore on Sunday night, June 27, 1982, for the International Research Conference on The Sudden Infant Death Syndrome. The experts, along with 250 other scientists and health professionals, came from all over America and twelve other countries and headed for the Hyatt Regency Hotel. Despite all the turmoil in Baltimore, Steinschneider was beaming. This was his SIDS conference. He wore his apnea theory like a badge of honor.
For the first time in two decades, Abe Bergman was not in attendance at an international SIDS conference. Steinschneider did not reciprocate the invitation Bergman had made to him back in 1969, and underscored it by personally calling Bergman’s colleague Bruce Beckwith to ask him to come. Arriving at the meeting, Beckwith was eyed with barely concealed hostility by the man whose work he’d so openly criticized, Richard Naeye. Both would be on a pathology panel with Russell Fisher, Molly Dapena, and Britain’s John Emery, all of whom had spent nearly a decade puzzling over the enigma of Naeye’s tissue markers. Another panel would bring together a number of epidemiologists who had spent years pondering the emotionally charged question brought into prominence by Steinschneider’s 1972 paper—the question of familial SIDS. Peter Froggatt, the researcher from Northern Ireland who in 1969 had presented the first data indicating SIDS could run in families, would discuss the issue with such newer investigators as Susan Standfast, a SIDS researcher from Albany, New York, who tended to believe SIDS did not recur. A couple of years before, in fact, Standfast had received a visit from a New York State Police investigator who wanted to know the chances of three babies dying in one family. Astronomical, she had told Harvey LaBar.
And in one of the final sessions, Steinschneider would be exploring the concept of “high-risk” babies with a panel, chaired by Sydney Segal, that included Dotty Kelly and a British pediatrician named David Southall, who had undertaken a major test of Steinschneider’s apnea theory and was rumored to be arriving from London with the results in his briefcase. Hovering around the entire assembly, meanwhile, was Healthdyne’s Pete Petit. Steinschneider paid no attention to the meeting’s resemblance to the gathering of a bickering family. The irony was conspicuous. Steinschneider himself had lit the match a decade before. Now he was presiding over the combustion.
He took the podium just after breakfast on Monday morning. “This is, for me, a particularly exciting moment,” he said. “I am convinced that in the next few days we will uncover many differences in opinion on how the results obtained are to be interpreted. I would strongly encourage the clear articulation of these points of difference.… We must never lose sight of the fact that infants are dying daily.…”
Countess Limerick greeted the doctors, thanked Healthdyne, then recited another of her eccentrically astute verses, summing up all that had happened in the increasingly fractious SIDS world in the eight years since Toronto:
The journals with paper abounded,
Their contents amazed and astounded,
Is it cause or effect?
Are there clues to protect?
In conclusion, we still feel confounded.
As the keynote speaker, Belfast’s Peter Froggatt offered the most poignant perspective of this turbulent but ever-hopeful group. A man of formidable intellect and a writerly ear, Froggatt was an epidemiologist who had spent many years pondering not merely the logarithms and pie charts of SIDS incidence, but the culture of science that had developed around the mystery in the two decades since “First Seattle,” as he called the premier SIDS meeting in 1963. Froggatt had always found it interesting that SIDS was a national preoccupation primarily in those countries—most notably the United States and Britain, and to a lesser degree Canada and Australia—that had experienced the twentieth century’s most dramatic declines in infant mortality. “And as this lethal tide receded, so it uncovered this entity of sudden unexpected and unexplained death in infants, which previously had lain unnoticed beneath the waves: personal tragedies but statistically unimportant.” But as the attendance at this and other major SIDS meetings indicated, the hunt had widened. Medical researchers from the Netherlands to New Zealand had made the pursuit of SIDS a worldwide scientific venture.
What, then, was the state of the science in 1982, nineteen years after the first gathering? Froggatt wistfully recalled the “unsuppressed euphoria” that had accompanied the earlier generation of SIDS researchers on their ferry trip home from Orcas Island in 1969. A decade of great bustle and blare ensued, but unhappily the 1970s had turned out to be a disappointing decade—despite the work of “many fine minds, the best techniques, and a scientific rectitude and integrity in which we can all feel proud, much of all this by persons here today.” In the new decade, prevention of SIDS seemed “increasingly an ever remote goal if not an actual mirage. New trails were undoubtedly blazed … but some are proving perhaps false trails.”
As he moved past what seemed a veiled reference to the elusiveness of the apnea theory, Froggatt urged his compatriots to press on—and to broaden their views. For if they continued to see SIDS from the perspective of one disease—one cause, he warned, “crib death may remain a disease of theories with virologists seeing a virological cause, respiratory physiologists seeing respiratory problems, immunologists incriminating immunological aberrations, and cardiologists with eyes only for the heart.”
For two days and nights, the researchers discussed, debated, and pondered the continuing puzzle of SIDS in so much conceptual depth that it was often impossible to know that it was dying children they were talking about. The doctors took turns offering their latest observations, and occasionally the exchanges took on a personal edge.
The title of Bruce Beckwith’s presentation was “Chronic Hypoxemia in the Sudden Infant Death Syndrome: A Critical Review of the Data Base.” After nearly ten years of trying, Beckwith declared at the end of an exhaustive review of the literature, Naeye’s peers had been unable to confirm the pathologist’s conclusions. Naeye glared. “I wish I’d made all the money in my career that Beckwith has made going around trying to debunk my findings,” he muttered angrily.
“What money?” Beckwith replied indignantly, back at his seat. He turned to his side when another panelist, Gordon Vawter, the chief of pathology at Boston’s Children’s Hospital, leaned over to him. “Thank you for doing that,” Vawter said privately. “Somebody’s been needing to do it.” If Beckwith’s review qualified as the official discrediting of the Seven Tissue Markers, it was just a hint of what lay ahead. The uncanny symmetry of apnea and hypoxia—of Steinschneider and Naeye, the one-two punch of the 1970s—would become vivid once more.
David Southall had come to Baltimore having spent three years with thousands of polygraph tracings of infant respiration in his lab at London’s Cardiothoracic Institute. Financed by a host of public and private British foundations and agencies, Southall had conducted a study of the relationship between breathing patterns, heart rate, and SIDS that dwarfed even Steinschneider’s. With his own team in London, a group from the department of medical physics at the Royal Hallamshire Hospital in Sheffield, and a researcher at Thames Polytechnic, Southall had tested thousands of babies and tried to view apnea from half a dozen angles. Conspicuously tight-lipped about what he had found, he had chosen Steinschneider’s meeting to announce the results. He came into the meeting room that afternoon and took his seat among his fellow pediatric researchers. Dorothy Kelly would give the first presentation of the session. Southall would follow. Steinschneider would go last.
Since she and Dan Shannon had begun monitoring in 1973, Kelly told the audience, they had seen 202 infants whom they had determined to be at risk. The babies were among those who had come into the hospital after reports of prolonged apneic episodes at home, in some cases resulting in mouth-to-mouth resuscitation. Kelly had evaluated these near-miss babies with pneumograms, confirmed there was an apnea problem that put them at risk, and sent them home on monitors for several months. The results were eyecatching: The parents of thirty-four of these babies later said they had needed to resuscitate them at home yet again. Seven of these resuscitations were unsuccessful. Kelly considered her results credible evidence for the apnea theory. Given the seven deaths, however, they seemed an ambiguous argument for monitors as life savers.
Listening from his seat at the panel table, David Southall found Kelly’s numbers perplexing. He wondered whether the Boston team’s study groups were too small or their measurements inaccurate. Perhaps it was that they were basing their observations too much on the reports of parents. Whatever the reasons, he was confident their conclusions were wrong. He felt this way primarily because they were so at odds with his own. When Kelly completed her presentation, Southall, a tall and slender man with an air of erudition, made his way to the podium.
Southall had always considered a cessation of breathing efforts to be a plausible if partial explanation for SIDS. But he was worried about the growing use of monitors in the absence of evidence confirming the theory. The demand for the machines had crossed the Atlantic, and Southall didn’t like this at all. He would have been happy to prove Steinschneider’s hypothesis right, but just as his fellow Briton John Emery had been unable to confirm Richard Naeye’s tissue markers, Southall hadn’t been able to see what Steinschneider or Shannon and Kelly saw. He flashed his first slide, and got right to the news he had been so carefully guarding.
During two years at three major hospitals, he and his team had made twenty-four-hour pneumograms of 9,251 babies. The audience murmured at the numbers. A third of the babies were low birth weight or prematures thought to be at highest risk. All the babies had been followed prospectively, so that when a baby went on to die of SIDS, as twenty-seven did, Southall went back to the child’s pneumogram and looked for evidence of apnea. “None of the recordings on the twenty-seven SIDS cases showed prolonged apnea,” he said. Only two had unusually frequent periods of short apnea.
A wave of astonishment washed over the audience. “I almost fell out of my seat,” Molly Dapena would say later.
Furthermore, Southall continued, there was no evidence that SIDS ran in families. He had tested and followed 204 siblings of SIDS victims. None died. “Our main criticism of previous sibling studies is that relatively small numbers of cases have been used, perhaps none of which were at increased risk of SIDS,” he told his colleagues, some of whom were now trying to read Steinschneider’s face, as well as Kelly’s. “… The relatively low incidence of SIDS means that five hundred infants may have to be studied to include one who will subsequently die.”
It was a remark that seemed almost directed at the conference’s host. As everyone well knew, Steinschneider’s famous paper had included two deaths. Two of the first five babies he studied had died.
Southall kept going. He presented case after case, study after study, slide after slide. He had tried to confirm the apnea theory from every perspective imaginable, but always came up with the same findings. “The data do not support the hypothesis that SIDS is frequently related to apnea,” he said.
Steinschneider and Kelly steamed silently as Southall presented his data. “All eyes were on this tiger,” Bruce Beckwith remembered.
Now, Southall addressed the other half of the apnea theory. “Home apnea monitoring has been advocated by some as a measure of preventing SIDS,” he said. “The evidence provided by this present study would not support home monitoring to detect primary apnea in the general population.” He had shown that the pneumograms, embraced so completely by Kelly, didn’t predict or help prevent SIDS. “We shouldn’t waste time on these technologies,” he said flatly.
Southall’s findings were unequivocal. He had concluded that just about everything the host of the conference believed was wrong. He began to move away from the podium. In the audience, someone began to applaud. People shifted in their seats to see where it was coming from. It was Bruce Beckwith. He was standing, and clapping. Then others joined him. Molly Dapena was among them. “Southall just blew me away,” she said. “It was a fantastic thing to do. A necessary thing to do.”
Steinschneider kept calm. He had had no clue in planning the event that Southall would detonate a bomb in his own backyard. And he was the next presenter. He rose from his seat, and walked to the podium with an air of studied confidence. The audience was still, waiting for his response.
“The observation,” he began, “that certain categories of infants are at increased risk to die of the Sudden Infant Death Syndrome has provided the basis for a flurry of research studies. This is not surprising.…”
Steinschneider was on the defensive, just as he had been with the NICHD committee a few months before, but to the surprise of some who knew him well, he managed to remain the courtly host, following Southall’s methodical broadside with his own calm recitation of the facts as he saw them, never deserting his own work for a direct attack on Southall’s. He put into play a ringing defense of his concept of “high-risk” babies and of the highly charged doctrine of monitoring. He offered every epidemiological study that ever looked at multiple SIDS, arguing that yes, it could run in families—even if he freely conceded that neither he nor anyone else had produced any scientific evidence. “The incidence of subsequent unexplained death among these infants is not well established,” he said, “but has been reported as ranging from twenty percent to one hundred percent.” He did not add that he had pulled the 100 percent figure—the notion that every baby in a family could die of SIDS—straight from his 1972 paper. “We believe,” Steinschneider said, “that to assume otherwise, without supporting evidence to the contrary, leads only to the self-fulfilling prophecy that infants will die.”
If Steinschneider’s strategy was to convey to the gathering that he considered Southall’s findings just another study by another scientist, it worked. He never mentioned his name or addressed his work. He ended his presentation with his customary statement of frustration and optimism—his call for more research and his unwavering belief in his own judgment. As Froggatt had urged, he would press on. Not everyone had applauded Southall—in fact, his antimonitoring stand brought enough sharp looks and hostile remarks outside the room for Southall to later conclude, “It didn’t go over well. The view was I shouldn’t interfere—let the clinicians do their work.” It was a trenchant assessment of the growing mood of the times. Al Steinschneider would most certainly carry on.
But he would do it elsewhere. His relations with both the university and the NICHD broken beyond repair, Steinschneider called a meeting of the board of the SIDS Institute shortly after the conference, and announced that he wanted to go private. The move would liberate the institute from the shackles of the academic bureaucracy, he told the board members. They would raise more money and no one could tell them how to spend it. He had already decided not to resubmit the grant renewal application to NICHD.
Tyson Tildon was furious. He felt the SIDS Institute was as much his baby as Steinschneider’s. He had overseen the medical school’s SIDS research since it consisted of a single sleep lab in 1973 and felt every bit as responsible for its phenomenal growth as Steinschneider. “Al,” Tildon told him, “you’re a slimeball.” It rolled off Steinschneider’s back.
The board was split. Half thought that Steinschneider was the institute, and that he was entitled to leave, taking the private money he’d raised with him. The others felt that there was a deep obligation to the university, and that it would be akin to stealing a public institution.
Tildon was nervous. His brother, Charles, one of the board members, told him not to worry, that the vote was pulling toward keeping the institute at the university. But Charles was wrong. Steinschneider was working behind the scenes. He was leaving, he told the board members, and he was taking the money with him. By this he meant the Parker H. Petit Endowment Fund. In one year, the five thousand shares of Healthdyne stock had tripled in value, to $275,000. Petit sided with Steinschneider. He agreed the money should go to a new private operation they were setting up with Tom Moran, the institute’s fund-raiser. They would call it the National Center for the Prevention of SIDS. In the end, Steinschneider managed to persuade a swing voter that this was a battle the university could not win. After some negotiation, it was agreed that Steinschneider would go quietly, with half the Healthdyne money.
For Steinschneider, it was a small price to pay for independence. He made the move official that December, and the Baltimore papers put the news on the front page. “Yes, we’re rocking the boat,” Steinschneider told the News American, “because we believe it’s the best way to follow the leads that will make a difference in solving the SIDS problem.” Steinschneider said he was leaving because he and the university clashed over research philosophy. “I want to go for the shortest route to prevent deaths. This is my commitment, with no apologies. I’m in a hurry.”
He summed up the situation more pithily when he talked to old colleagues. “I told them, ‘Screw you, I’ll have my own institute and get my own money,’ ” Steinschneider said to Jack Schneider during a brief trip to Syracuse. His recent colleagues in Baltimore had their own spins on the parting. “I got rid of him,” is how pediatrics chairman David Lang saw it. In Baltimore, it was the dismantling of an era. The end of the grant meant the end of a purposeful job for many of the dozens of doctors, nurses, and technicians who made up the research project’s labor force.
Steinschneider set up his own shop, but closed it down only a few months later and left Baltimore. In the end, he had not been “crazy lucky,” as he had hoped he might when he won the biggest SIDS research grant ever awarded. But he was still convinced he was, as he had put it then, “heading in the right direction.” Few were surprised to hear that now the direction was south—that Steinschneider was moving his operation to a fully equipped suite of offices just outside Marietta, Georgia.