Formative Years: Children's Health in the United States, 1880-2000

Framework as Prison: Interpreting Fetal Alcohol Syndrome in the Late Twentieth Century

Janet Golden Framework as Prison Interpreting Fetal Alcohol Syndrome in the Late Twentieth Century In 1973 David Smith, a dysmorphologist (a specialist in clinical genetics concerned with diagnosing and interpreting patterns of physical defects), and his resident fellow, Kenneth Lyons Jones, “discovered” fetal alcohol syndrome (FAS). FAS is a pattern of birth defects that occurs in approximately three per one thousand to one per two thousand live births in the United States as the result of heavy maternal alcohol use during pregnancy.1 Clinically, it is de‹ned by pre- and postnatal growth retardation, head and facial abnormalities, and central nervous system disorders; organ system problems are also frequent. Many experts believe that alcohol use during pregnancy is “the most common cause of mental retardation in the United States and may be responsible for up to 5% of all congenital anomalies.”2 Soon after they published their ‹ndings, Jones and Smith learned that 127 cases of what came to be termed FAS had been described by French physician Paul Lemoine in 1968.3 Indeed, since the 1970s researchers have found numerous overlooked descriptions suggesting that alcohol is a teratogen—an agent capable of causing congenital, structural, functional, and pathological changes during embryonic or fetal development. Among the most critical of the early reports are the works of English prison physician William Sullivan, who studied the effects of maternal alcohol abuse in pregnancy at the turn of the century.4 The historical and recent accounts raise the question of how it became possible for both physicians and the public to recognize and accept FAS in the late twentieth century. This chapter elucidates the social and cultural context in which FAS was discovered and suggests how the context of discovery ultimately con‹gured—for better and for worse—our contemporary understanding of FAS.5 While this account 260
emphasizes the rapid acceptance of the hypothesis that heavy in utero alcohol exposure could result in birth defects, I do not mean to imply that FAS was an uncontested diagnosis. Nevertheless, I contend that the National Institute of Alcohol Abuse and Alcoholism’s (NIAAA) issuance in 1977 of an of‹cial warning against heavy drinking during pregnancy, only four years after the ‹rst article on FAS appeared, and the surgeon general’s 1981 warning to pregnant women and to women considering pregnancy “not to drink alcoholic beverages” signaled that FAS had attained medical and governmental credibility within a few years of its modern discovery.6 What made the claims of Kenneth Lyons Jones and David Smith and their two collaborators, pediatrician Christy Ulleland and psychologist Ann Streissguth, readily acceptable in the early 1970s? Three things. The thalidomide tragedy and subsequent discoveries of other teratogens provided an intellectual framework for understanding fetal vulnerability. Second, the legalization of abortion made it possible to conceive of FAS as a treatable medical problem. Finally, growing attention to the problem of women’s alcoholism made it reasonable to consider that alcohol abuse in pregnancy could have serious consequences beyond those experienced by the women themselves. Fetal Risk The thalidomide story broke in 1961 and spread quickly from the medical community to a worldwide audience that gasped in collective horror at the damage done by a supposedly safe drug. The public learned that the womb was not a protective barrier surrounding the fetus but rather a thin membrane easily penetrated by man-made toxins. The episode shook the public’s faith in medical science and in the pharmaceutical industry. Thanks to the vigilance of Food and Drug Administration (FDA) scientist Dr. Frances Kelsey, thalidomide never received approval for licensing in the United States. Nevertheless, the would-be American manufacturer distributed over 2.5 million capsules to more than twelve hundred physicians for testing. When news of the danger broke, President John F. Kennedy took a few moments of his weekly news conference to ask women to check their medicine cabinets. For some, the message came too late; at least ten American children were severely damaged in the so-called clinical trials.7 The news media lauded Kelsey as a valiant woman physician who stood up to the pressures exerted by the pharmaceutical company and Framework as Prison 261 its allies, underscoring that Americans had narrowly avoided a massive tragedy.8 In magazines and on television, Americans viewed the appalling images of European infants with missing limbs and toddlers with prostheses strapped to their chests. When a Belgian woman...