Defining birth defects: Foundations, experts, and popular media

The 1950s witnessed renewed scientific and medical interest in abnormal human development and the prenatal period during a period of demographic expansion. With reduction in childhood mortality from infectious disease, rising birth rates, and a higher proportion of hospital births, congenital malformations loomed larger as a cause of childhood morbidity and mortality (Saffian Reference Saffian1962, 5–7).Footnote ¹² Nearly all births (greater than 80%) occurred in hospital settings, so congenital malformations were the object of medical and state attention rather than the private experience and care of individual families and birth attendants. Physician scientists at the time portrayed congenital malformations as something previously shunned, hidden, or neglected and remarked on the improved ability to diagnose (and often surgically repair) infants born with anatomical anomalies (Warkany Reference Warkany1957).Footnote ¹³

Birth anomalies in the early twentieth century were largely hidden from public view. Indeed, the legitimacy of reproductive science was contested, in part because of associations with sexuality and women’s health (Clarke, Reference Clarke1998, Reference Clarke1991). Social movements of the early twentieth century influenced pediatrics and obstetric professional specialization more than the innovation-driven organ-focused specialties formed in the nineteenth century (Halpern Reference Halpern1988). Gradually, researchers such as perinatal pathologist Edith Potter exposed causes of infant mortality, and others studied maternal undernutrition (Potter and Adair Reference Potter and Lyman Adair1940; Buklijas Reference Buklijas2014). Josef Warkany showed nutritional factors fundamental to rat development in the 1940s, influencing the NF and also initiated a meeting of like-minded scientists interested in abnormal fetal development in 1956—what would become the Teratology Society (Warkany and Nelson Reference Warkany and Nelson1940; Dron Reference Dron2016). Clinicians did not always acknowledge how investment in radiobiology safety research and public fears about deployment and testing of atomic weaponry postwar raised new concerns about reproduction and genetically or developmentally impaired children (Plummer Reference Plummer1952, 36–43; Hollaender Reference Holt1954; Beatty Reference Beatty1991; Lindee Reference Lindee1994; Rasmussen Reference Rasmussen1997; Zaretsky Reference Zaretsky2018; Nemec and Dron Reference Nemec and Dron2022; Creager Reference Creager2015). There was concomitant growth in medical and scientific research fields studying congenital malformations (among them teratology, pediatrics, and later dysmorphology, perinatology, and medical genetics), which helped guide the reorganization of philanthropic organizations and government towards the science-based prevention of birth defects.

In the early 1950s, before the NFIP’s new mission, another New York-based charity called the Association for the Aid of Crippled Children (AACC) began to emphasize research pertaining to the prenatal period in addition to training and support for affected children and families.Footnote ¹⁴ In June 1952, the AACC funded a conference in New York, chaired by an obstetrician and two pediatricians, Emmett Holt, Jr., Theodore Ingalls, and Louis Hellman, addressing “Prematurity, Congenital Malformation, and Birth Injury” (1953). Hellman, a birth control advocate, was subsequently chairman of the Human Embryology and Development Study Section, established at the National Institutes of Health (NIH) in 1954 (Holt Reference Holt1953). In 1953, Congress also appropriated funds for large studies to understand the association between adverse birth events and cerebral palsy, based on the John Hopkins University epidemiologist Abraham Lilienfeld’s studies of the “the continuum of reproductive wastage,” suggesting that empirical research on pregnancy was attracting attention and funds in many sectors (Lilienfeld and Parkhurst Reference Lilienfeld and Parkhurst1951; Klebanoff Reference Klebanoff2009).

Professional and philanthropic organizing to fund medical research influenced parenting advice. Holt and journalist Joan Gould published a pamphlet in 1958, partially funded by the AACC, which emphasized the question “Will My Baby be Born Normal?” (Gould Reference Halpern1958). Holt and Gould wanted to make readers more aware of various risks that a pregnant woman might face that could harm the fetus. As such, the pamphlet broaches the issue of babies with different mental or physical characteristics from the norm, highlighting the opportunities for intervention and the responsibilities of pregnant women. They admonished that, “A woman must safeguard her child from the very moment when the child is conceived, and especially during those crucial first months in the uterus … She should know all she can know about safeguarding her baby before she becomes pregnant” (Ibid, 4). Defining eugenics as “encouraging healthy and intelligent people to have as many babies as they want,” the pamphlet’s emphasis was on women’s proactive preconception knowledge and vigilance (Ibid, 16). Notably, this pamphlet lists the American Eugenics Society alongside the NARC, the National Society for Crippled Children and Adults, and the NF as places to seek further advice and resources, showing the overlapping aims of these organizations in the 1950s.

In the context of growing medical interest in prenatal injury and maldevelopment, the National Foundation popularized the term “birth defect.” They wanted to form a multiplicity of diverse conditions with wide-ranging etiologies into a single cohesive field, and to make that field intelligible to parents without expert training. Medical terminology typically referred to congenital malformations or congenital anomalies or abnormalities, overlapping definitions that encompassed both obvious anatomical abnormalities visible at birth and more subtle deviations from the norm that became evident as an infant or young child grew. As Martin Pernick’s work shows, physicians were tasked with drawing lines defining when rehabilitation was medically possible or desirable for severely affected infants, engaging in vigorous early-twentieth-century debates about withholding treatment, or, more rarely, hastening death (Pernick Reference Pernick1996, 18, 41–55, 81–86).Footnote ¹⁵ Used infrequently before the 1950s, the term birth defect was reportedly coined by NF publicist Dorothy Ducas and was likely intended to soften prior technical terms for children with serious disabilities, such as “defectives,” and “deformed” or “defective” infants (Rose Reference Rose2016, 128).Footnote ¹⁶ Nevertheless, changing the terminology did not remove value judgements, and ensuing publicity and news articles about birth defects frequently portrayed a dichotomy between newborns as either blessings or tragedies, collapsing the considerable range of possible birth outcomes and parental reactions (e.g., Baker Reference Baker1962).

As the NF’s Director of the Division of Congenital Malformations, Virginia Apgar helped to shape their publicity and scientific agenda. The Austrian pediatrician and teratologist Josef Warkany influenced the National Foundation’s focus on congenital malformations but declined to leave Cincinnati to take a leadership position; Apgar assumed this role. Apgar trained as a surgeon in New York, before specializing in obstetric anesthesiology, and is most famous for creating a widely-used scoring system to assess neonatal vitality (Apgar Reference Apgar1953).

Apgar’s writing demonstrates her effort on behalf of the NF and other midcentury researchers to create a coherent and intelligible scientific research and advocacy arena out of seemingly rare, intractable, and diverse infant conditions. The term “birth defect” might thus include both relatively minor anatomical issues, such as webbed toes and cleft lips or palates, or vastly more severe or disabling conditions including errors of metabolism that affected intellectual ability, such as PKU, as well as severe neural tube defects typically incompatible with life, like anencephaly. If the NF initially estimated there were over 600 birth defects, the Children’s Bureau Crippled Children’s Program tracked the incidence of only six congenital malformations in the 1950s: spina bifida and meningocele, congenital cataract, malformations of the circulatory system, cleft palate and harelip, dislocation of the hip, and clubfoot or flatfoot. In a report from 1962, they emphasized the increasing numbers of children covered by their programs, augmented possibly by “congenital conditions for which medical or surgical care formerly was not available or feasible” (Saffian Reference Saffian1962, 7,18). Despite this apparent medical progress, congenital malformations were portrayed as a growing problem affecting the public purse.

The term “birth defect” could be difficult to parse, in that it could be a more or less inclusive definition depending on how, and by whom, it was wielded. Part of the utility of the term was its very capaciousness, as it shifted attention away from a medical definition rooted in severe anatomical differences towards a broader and more all-encompassing and flexible category that affected more infants (not unlike the term “disability”). Researchers studying teratology were often pragmatically inclined to use the narrower term “congenital malformations,” including anatomical abnormalities or functional deficit visible at or shortly after birth. However, this was contested, and even as it lost ground to the broader and more colloquial “birth defects”, the term “congenital malformation” was sometimes expanded in the 1960s to include more minor conditions, metabolic malfunctions that affected development, intellectual or behavioral deviations from normal, or functional syndromes that manifested themselves later in childhood.Footnote ¹⁷

From infantile paralysis to “crippling” birth defects: The National Foundation’s expanded program of 1958

Appeals for contributions to birth defect research were guided by Basil O’Connor, a law partner and advisor to Franklin Delano Roosevelt (FDR), who had helped found the NFIP in 1937–1938. He was a New York-based corporate lawyer whom FDR had tasked in the 1920s with raising funds to support a crumbling resort and polio rehabilitation center in Warm Springs, Georgia. O’Connor demonstrated an aptitude for fundraising, selling a populist vision of soliciting small contributions to address epidemic polio, at times alarming scientists with his flamboyant publicity and bold statements about the imminent and inevitable cure for polio (Paul Reference Paul1971).Footnote ¹⁸ Initially, fundraising relied on birthday balls and galas, but later the March of Dimes collected contributions through vast networks of volunteers, more than 3,100 county chapters, myriad mother’s marches conducting door-to-door campaigns, and celebrity endorsements and solicitations in movie theaters and other media. Businessmen who wanted political favor, like Henry L. Doherty, helped sponsor elite dinner dances at the Hotel Astor and Waldorf-Astoria in New York City, and lavish parties in towns across America, under the tagline “dancing that others may walk.”Footnote ¹⁹ The vaudeville performer Eddie Cantor coined the March of Dimes fundraising campaign as a play on a popular news series called The March of Time, and his 1937 request for dimes to be sent to the President to combat polio initially buried White House mail under a flood of donated dimes—more than 80,000 letters (Altenbaugh Reference Altenbaugh2015, 64–65; Rose Reference Rose2016, 93–94; Smith Reference Smith1990, 74).

By the mid-1950s, the administration of NFIP engaged in soul-searching about their mission. With successful vaccine trials, polio seemed vanquished, and they were preparing to expand their focus. As early as 1953, when news of promising vaccine candidates leaked, O’Connor tasked Melvin Glasser (a social worker formerly employed by the American Red Cross) to consider their changing course (Baghdady and Maddock Reference Baghdady and Maddock2008). Glasser appeared receptive to the AACC’s interest in funding scientific efforts to prevent infant injury, lunching and corresponding with Leonard Mayo, the AACC’s Director (Mayo Reference Mayo1957).

Despite their obvious affinity for childhood conditions, the NFIP considered many options: geriatrics, mental health, viral diseases, muscular dystrophy, maternal and child health, arthritis, diseases of the central nervous system, the common cold, dental health, and juvenile delinquency.Footnote ²⁰ Any new program would have to address a compelling issue that would maintain the grassroots appeal and volunteerism associated with childhood polio.Footnote ²¹ Additionally, it would have to be a broader program than polio—a health issue that affected different social strata and regions—in order to build on the donation model of small gifts and a broad base of contributions (Baghdady and Maddock Reference Baghdady and Maddock2008, 62).

As part of this reassessment, the NFIP leadership commissioned a study between 1953 and 1956 from researchers at the Princeton-based American Institute of Public Opinion (founders of the Gallup poll) and at Columbia University’s Bureau of Applied Social Research. By surveying the public and interviewing local chapter leaders and volunteers, they hoped to identify what was known about the NFIP, as well as areas of exceptional success or potential improvement (Sills Reference Sills1957).Footnote ²² Gallup and Columbia University specialists recommended an approach that built on NFIP’s reservoir of public goodwill and emphasized helping children over approaches that were primarily oriented towards training professionals or mobilizing volunteers. In addition, the social scientists recommended underscoring science as a source of hope, noting that “hope for eventual solution by scientific research is an important ingredient,” and that “a future program might well be handicapped if … hope and the possibilities of science did not play a part.”Footnote ²³ Melvin Glasser wrote to Basil O’Connor in 1954 that contributions were often based on “fantasy hope,” which was essential to a successful program. Any program would need to have “the promise that someday, regardless of how far in the future, research could eliminate or greatly reduce the problem. If there is even slight promise of this … ‘fantasy hope’ will take care of the rest.”Footnote ²⁴ One can see here an effort to take certain aspects of religious life—faith, hope, or salvation—and harness them to secular scientific medical research projects. Part of the success of the fundraising campaign rested on the NF’s ability to convey hope that investment in scientific research would, in the future, eventually significantly impact or vanquish congenital disability.

Eschewing the medical language of congenital malformations or the mysticism of monsters or marked children, NF staff used the terminology “defects” and the language of hope and rights to explain their mission of preventable birth defects. Nevertheless, they borrowed eugenic rhetoric, such as the “right to be well born,” used by the progressive-era reformers like Jane Addams to laude eugenics research and marriage policies (well born is one translation of the Greek word eugenes) (Lombardo Reference Lombardo2017, 218–221).Footnote ²⁵

While defining the Expanded Program, staff members considered factors that would affect its success. They chose a broad topic, which would have high impact and the potential to attract and retain the volunteers and grassroots funding they had developed for polio research and rehabilitation. Foundation staff argued that nearly everyone had known polio victims.Footnote ²⁶ Would citizens participate in activities associated with congenital malformation? They worried that congenital malformations would be too disturbing to engage their intended audience. Though public awareness would increase giving, they noted that the “fear” angle should be handled carefully, as “it obviously would be questionable public service if every potential mother were made to fear that she might have a deformed child.” The idea of “malformations and monsters and so on” was “undoubtedly unpleasant to the average person.” Yet, the coin could “be reversed, and the idea of assuring more nearly perfect children—children bearing no legacy of defect—could be made positive and attractive.”Footnote ²⁷ To retain public interest, including volunteers and monetary contributions, they wanted to frame congenital malformations broadly, in a positive and proactive light.

One strong argument against choosing congenital malformations as a mission was that they would need to “reject patient care for the largest number of children who have congenital malformations—namely those with mental deficiencies and with multiple malformations now beyond the knowledge and treatment skill of the medical profession.”Footnote ²⁸ Staff expressed dismay that for years to come the NF would need to reject the claims of some of the most severely impaired. The issue of how to prioritize research and medical funds for the vast expanse of childhood impairment they defined as their new mission would remain a lingering concern. Even as triumphant stories highlighting the successful surgical repair of infants born with malformations made headlines in the 1950s and 1960s, increased expenditures in Children’s Bureau programs hinted that medical intervention sometimes saved lives without restoring typical function (Anonymous 1953, 1960a, 1960b; Milhorat Reference Milhorat1974).

Though inspired by the prospect of helping children with “crippling” disorders, the NF’s new expanded program, announced in July 1958, was deliberately broad and not tied to a particular disease, encompassing the field of congenital malformations, juvenile arthritis, and polio. In publicity, O’Connor outlined the aim of establishing the total number of children affected by juvenile arthritis and “to start at once to find children who have defects which can be corrected or improved.”Footnote ²⁹ He argued that birth defects were the “largest unmet childhood medical problem in the United States.”Footnote ³⁰

Though NF staff knew that the birth of infants with unusual anatomy was an old and seemingly intractable problem, they may have underestimated the complexity of congenital disability. Research on birth defects could be interpreted to mean both therapeutic and basic science questions related to a diverse range of disorders, though they specifically excluded cardiac conditions (the purview of other foundations). The NF was interested in funding both biological processes and studies in rehabilitation, including viral and radiation research, genetics, pharmacology, and studies of causes and prevention.Footnote ³¹ In this new project, the prenatal period was of particular concern, as science “was just entering the era where we are learning what causes damage to the embryo,” and it was too early to say that “chemical means cannot be discovered for protecting the unborn child within its mother” (the phrasing implies this was thought unlikely). Evoking concerns about atomic energy, in utero radiation is also listed as an area of research and a cause of birth defects: “Any radiation may damage human germ cells and result in the birth of children with defects.”Footnote ³²

The Expanded Program was launched at a televised press conference at the Waldorf-Astoria Hotel in New York City in July 1958, with speeches by well-known scientists, among them NFIP grantee and polio vaccine investigator, Jonas Salk. NF President and co-founder, Basil O’Connor, emphasized the new program’s scientific grounding and flexibility (Whitman Reference Whitman1972). O’Connor prepared to answer a range of anticipated questions about the breadth and objectives of the program: Was the prevention of birth defects effectively a matter of “birth control”? What could be done for infants with impairment of the central nervous system? Was the program so broad that it was “a blank check to do whatever you choose?”Footnote ³³

Most public reactions to the expanded program were laudatory, a testament to the widespread excitement about the potential of applied scientific research in the 1950s and public support for the objectives of the NF. Like many health initiatives, their language evoked fighting or a military campaign (Rose Reference Rose2016, 85–102).Footnote ³⁴ The New York Times declared that: “The brilliant history and achievement of the National Foundation augur well for the future. The record of the past gives confidence that the same approaches that brought victory over one group of crippling diseases will bring similar victory in other fields as well.”Footnote ³⁵ A cartoon in the Philadelphia Daily News depicted a muscular blond male March of Dimes boxer defeating polio in a fighting ring with boxing gloves labeled “Salk vaccine.” The cartoon depicts medical science as the referee and shows other menacing chronic disease opponents lined up in the sidelines, waiting for their due (see fig. 1).

Figure 1. Cartoon on the National Foundation’s Expanded Program in the Philadelphia Daily News, July 28, 1958.Footnote ³⁶

More critical perspectives emphasized lack of collaboration. One journalist pointed out that the March of Dimes had refused to join the United Fund, yet was essentially creating a large fund in the hands of a private charity with a similarly broad program.Footnote ³⁷ Others noted the overlapping missions of various philanthropic organizations, suggesting rivalry over public fundraising with the Arthritis and Rheumatism Foundation and others.Footnote ³⁸ One such article noted that the “voluntary non-profit health agency, has come of age … [or] at least to a stage of advanced adolescence. … [W]e now have a long, long list of foundations, associations, or societies all geared toward the conquest of some specific ailment and affliction.”Footnote ³⁹ These perspectives seem to be engaged in debates about local vs. national control of fundraising dollars and disease-targeted vs. broader charitable health and welfare efforts.

The Expanded Program combined a desire to reduce the shame associated with congenital malformations, deemphasizing familial taint, with efforts to use medical research science to prevent or rehabilitate those born with unusual anatomy. The program was intended to be educational and destigmatizing, modifying community attitudes and shifting blame away from parents’ hereditary problems: “A skilled and delicate interpretation would need to be done to overcome the prevalent belief that most birth defects are due to hereditary factors and therefore, by implication, to deficiencies in the parents.”Footnote ⁴⁰ Here, the NF endeavored to move away from the shaming of families with hereditary illness and the elitism associated with eugenics, even as they promoted high-quality births largely for upper and middle-class White families. The program also raised questions about how to convey information about diverse, sometimes intractable and highly stigmatized, childhood impairments in a way that would maintain public interest and fundraising efforts.

Changing approaches to prevention of infant anomalies

The new program combined a broad program of scientific research with financial aid for the treatment and rehabilitation of specific paralytic disorders for those under the age of 18. However, the allocation of funds between these aims remained difficult. Based on internal memos about medical aid criteria and the poster children chosen in the first few years of the expanded program, neural tube defects were a major focus, particularly spina bifida. In 1959 the NF chose three children, one for each area of focus (polio, congenital malformation, and juvenile arthritis). One of them, Jeffrey Reil, was “born with an open spine.” The poster children of 1960 and 1961, toddlers Mary Beth Pyron and Linda Gail Breese, were also born with spina bifida (Breese also had hydrocephalus).

As with polio poster children, the public faces of affected children were sanitized emblems of vulnerability (Altenbaugh Reference Altenbaugh2015, 70–73). The NF poster children for 1959–1961 were appealing and well dressed, with few signs of impairment save for devices (like crutches or braces) intended to facilitate their mobility. As disability historian Paul Longmore demonstrated, images of impaired children were a common part of the iconography of charitable campaigns in the late nineteenth and twentieth centuries, such as the Warm Springs Foundation or the Easter Seal Society, which sponsored contests to select children for their campaigns (Longmore Reference Longmore and Lennard2013). Although common aspects of human experience, pain and suffering are difficult to depict visually, and Rosemarie Garland-Thomson has argued that photographs of physically disabled poster children served as representations of suffering to evoke sympathy and empower the agency of the viewer. By the 1950s, such images were deployed not only to depict suffering, but also to mobilize people to contribute with the aim of curing, promising “restoration to normalcy” (Garland-Thomson Reference Golden2001, 355–356).

It almost does not bear mention that little publicity was directed at the experiences, needs, or lives of disabled adults. One newspaper article cited NF Medical Director Thomas Rivers, who warned about prenatal risk factors like rubella, narcotics, X-Rays or anesthesia and stated that “through rehabilitation, many malformed babies can be helped to become useful and productive adults” (McCormack Reference McCormack1959, 15). Productivity and usefulness were seen as essential to valuable adult lives. Much as polio survivors were rendered invisible by a successful vaccine, little provision was made for grown children, particularly those who fell short of these goals.

Despite a broad scientific research program, in the late 1950s and early 1960s NF publicity and medical aid focused on children with neural tube disorders. After the mission changed, NF initially continued medical support for polio patients, but added financial aid that targeted infants, children, and adolescents through eighteen years of age with “progressive hydrocephalus, encephalocele or symptomatic spina bifida.”Footnote ⁴¹ In 1958, the NF circulated medical information on meningocele, meningomyelocele, and hydrocephalus among their staff (these are defined by fluid in the brain and two different types of exposed spinal material, one associated with damaged meninges and the other with protruding portions of the spinal cord and impaired function of the lower body).Footnote ⁴²

Though its publicity focused on images and stories about children with spina bifida, the NF research program was far broader, supporting a number of scientific efforts to study, diagnose, or prevent developmental disability. A press release from 1960 summarizes their key activities to address (as their header then read) crippling arthritis, crippling birth defects and crippling polio.Footnote ⁴³ In the two years since changing their program, the NF continued work in polio research, rehabilitation and vaccine education, allocating 2.2 million to establish six arthritis and birth defect study centers. Two NF clinical research centers, at Ohio State and Vanderbilt universities, were focused on “major birth defects (notably open spine, open skull and excess water on the brain).” The other centers focused on arthritis and rheumatism. In addition to this clinical work, twenty-two laboratory studies were funded to study the “enigma of birth defects.” Funded topics included viral infection in pregnant women and the hereditary basis of birth defects, including identification of a chromosomal abnormality associated with the connective tissue disorder, Marfan syndrome.

Grants detailed in June 1961 further elucidate the NF’s wide-ranging interests.Footnote ⁴⁴ They gave grants for research on infant vertebrae, spinal cords, and other studies of the central nervous system, as well as on bile defects. Other grants were for clinical studies to improve care for children with congenital defects, and for chromosomal research on unusual sexual differentiation. The NF funded research on causes of cleft palate, congenital skeletal disorders and metabolic bone diseases, on genes for galactosemia, on birth defect genetics, on abnormal metabolism of phenylalanine (to Robert Guthrie, who invented a biochemical test for PKU), on chemical and nutritional deficiencies, drug treatment for hydrocephalus, and on the effects of steroid hormones on sexual differentiation.

In practice, the diversity of conditions gave weight to studies that classified and diagnosed anomalies, part of the burgeoning field of medical genetics. In the early 1960s, NF research grants encompassed the medical diagnosis of congenital defects, and the basic sciences of genetics, development, and perinatology rather than, for example, needs assessments of disability or orthopedic studies. Their research program prioritized laboratory and clinical work over epidemiological studies (considered the purview of government). In essence, they trusted that funds for better scientific understanding of congenital disability (more scientific or technical knowledge) would more efficiently lead to prevention or treatment options than other applied research arenas such as patient needs assessments, orthopedics, or rehabilitation.

Meanwhile, the 1958 commitment to continued medical support for polio patients was short-lived. By 1960, the NF stopped funding long-term medical care for polio survivors and required county chapters to send twenty-five percent of their campaign funds to the central Medical Scientific Research Fund (compared to 7–11 percent the NFIP spent on polio research 1938–1958) (Baghdady and Maddock Reference Baghdady and Maddock2008). In August 1962, as the public responded to news about thalidomide-associated birth defects, the NF provided publicity materials to local chapters and daily newspapers about twenty-three special treatment centers for birth defects “to promote, develop, improve or expand differential diagnosis services” and provide care and consultation services.Footnote ⁴⁵

The NF’s hopeful rhetoric combined advocacy for amelioration and prevention of developmental disability with fundraising for clinical and laboratory methods to diagnose and answer fundamental questions about the origins of congenital impairment. As Director, Apgar championed using science to improve neonatal outcomes. Apgar’s speech to the Bergen County, NJ March of Dimes chapter in 1959 outlines the objective of preventing disability through medical research. She predicted, “Someday, when you read that ‘the cause of cleft palate has been found’, that ‘club feet need not exist’ or that ‘protection against radiation has been found,’ you will be thrilled, because you know you voluntarily chose to put your efforts and money into the March of Dimes.”Footnote ⁴⁶ NF rhetoric combined a plea for dispersed fundraising with explicit promises (some might say, unrealistic promises) that scientific research would provide a return on the investment by vanquishing common types of infant disability. In the case of some diseases and conditions, such as rubella-associated disabilities, congenital anatomical defects correctible with surgery, and erythroblastosis due to maternal-fetal Rh incompatibility, medical or technological fixes had dramatic results. In the 1950s, it seemed that improved nutrition, vaccines, and prenatal therapies might vanquish congenital malformations, much as improved diets and vitamins had largely eliminated childhood nutritional deficiencies such as rickets and antibiotics combined with vaccines had reduced childhood mortality from infectious disease (Apgar Reference Apgar1968).Footnote ⁴⁷

The NF’s language implied that the morally correct course was to pursue basic research into the underlying the causes of birth defects in order to eliminate them, and only rarely raised questions how to define and delineate what constitutes preventable neonatal disability. Apgar wrote in 1962 that it was “time to sweep away the fatalism and indifference,” as it was immoral not to use newly acquired knowledge to have healthier children (Apgar Reference Apgar1962, 20–2). Voicing a common opinion of the era, she sometimes implied that another morally correct course was for families with inherited illnesses to better control their reproduction (McCarty Reference McCarty1963).Footnote ⁴⁸ Nevertheless, anatomical or functional disorders diagnosed at or shortly after birth proved a resistant target for elimination. Indeed, characterizing anatomical disabilities that children were born with as something that needed to be prevented gradually became more contentious as, by the late 1960s, abortion became one (still rare) means of preventing birth defects or genetic illnesses prenatally.

The March of Dimes helped fund clinics that diagnosed birth defects and provided services to parents with a family history or past experience with birth defects. They tried to maintain neutrality about amniocentesis and abortion, yet their approach tended to conceptualize fetuses as patients and unborn children even as they also funded genetic counseling and prenatal diagnostic clinics that, at least in some locations, began to offer the option of identifying and terminating affected pregnancies. When editorials in the late 1960s questioned the use of amniocentesis and abortion to terminate pregnancies affected by birth defects, Virginia Apgar tended to portray the NF’s position as neutral, simply responding to a controversial societal issue.

For instance, the journalist James Conniff (father of a child with Down syndrome) wrote a New York Times article about fetology, “The World of the Unborn,” which raised questions about the appropriate uses of amniocentesis (Conniff Reference Conniff1967). One physician quoted drew parallels between the elimination of defects and the Holocaust, saying: “Jews especially … ought to recognize that in recommending the elimination of one kind of ‘defect’… they are ironically echoing the satanic philosophy which sought to eliminate another kind of ‘defect’ at Auchwitz [sic], Dachau, Belsen, and so on” (Conniff Reference Conniff1967, 96–97). References to the Holocaust have emotional valiance, and this quote alarmed several readers, who wrote to point out that there were major issues of scale—how could he compare the murder of more than six million with one terminated, possibly nonviable, pregnancy? Another described herself as a parent of a children living with Down syndrome, who naturally loved her child, but said she definitively supported efforts to prevent the birth of infants with Down syndrome prenatally (Morris Reference Morris1967, 12). In letter responding to Conniff’s article, Apgar acknowledged that the March of Dimes’ approach did not preclude the termination of malformed fetuses, and restated the Foundation’s tagline “every child has a right to be well born.” She stated, “The March of Dimes position is simply that new advances in science and medicine are posing difficult moral and philosophical questions. We do not propose to supply the answers to the questions since they obviously can only be answered by public consensus” (Apgar Reference Apgar1967). Public consensus about abortion, the meaning of eugenics, when it was justifiable to attempt to prevent infant anomalies, and how to uphold human flourishing and care for the severely disabled, would remain elusive. Advocacy for reproductive autonomy linked to the women’s health movement, combined with fears about birth defects, helped propel further decriminalization of abortion—which began with legislative heterogeneity across states but expanded nationally after the 1973 Roe vs. Wade decision (Reagan Reference Reagan1997). Sex or disability-selective abortions, used by some families with inherited hemophilia since the mid-1950s, became more routine once amniocentesis could detect chromosomal aneuploidies, particularly following a series of successful wrongful birth lawsuits in 1978–1979 (Fuchs and Riis Reference Gallagher1956, 95–100; Casper Reference Casper1998; Cowan Reference Cowan, Karen and Elizabeth1994, Reference Cowan2008; Nicolson and Fleming Reference Nicolson and Fleming2013; Löwy Reference Löwy2017).

Presumably, the NF’s language of eliminating birth defects and funding clinical diagnostic centers for birth defects became less palatable to some constituencies as a result of the conflict over the further legalization of abortion and women’s advocacy for greater reproductive autonomy. Certainly, eliminating fetuses thought likely to be born with birth defects posed different challenges than eliminating an infectious disease such as polio. Voices that advocated for collective approaches to the prenatal prevention of birth defects, for the wellbeing of children and to reduce the burden on families and society (a utilitarian argument), gradually gave way to the narrative of giving individual parents reproductive autonomy and choices through diagnostic technologies (a deontological argument, hinging on parents’ reproductive rights and self-determination). At the NF, a memorandum on amniocentesis was circulated internally in 1972, stating that the “decision to terminate is a parental decision, not under March of Dimes purview.”Footnote ⁴⁹ In their 1972 annual report, contemporaneous with debates about further legalization of medical abortion, the NF moved away from the language of eliminating birth defects and used more moderate language focusing on the value of perinatology to improving maternal and infant health.Footnote ⁵⁰

Responding to thalidomide: Public fears and professional deliberations

Some of the reportage around birth defects is likely linked to fears and reportage on the sedative thalidomide, which initially seemed safe and less likely to cause overdoses than alternatives (Daemmrich Reference Daemmrich2002). Rubella epidemics in the mid-1960s likewise drew attention to preventable birth defects, opening up public conversations about dangers to pregnancy, disability, and abortion (Reagan Reference Reagan2010). Morton Mintz broke the story about thalidomide to a broader American public in a July 1962 Washington Post article that lauded the FDA for keeping the drug off the U.S. market (Mintz Reference Mintz1962). Shortly after, a Life article, “The Drug that Left a Trail of Heartbreak,” showed images of a dimpled British baby in white dress with bare feet and no arms juxtaposed in a two-page spread with an image of a troubled expectant mother (1962).

Virginia Apgar had first heard of birth defects attributed to a popular tranquilizer called Contergan in February 1962, as her colleague the pediatric cardiologist Helen Taussig made a trip to Germany to consult on heart-related complications. By then, media in Germany had publicized alerts about the drug, but American audiences were still largely unaware. Taussig reported on her trip in April 1962 to colleagues in Baltimore, estimating that between 3,000 and 5,000 children in West Germany and England were affected by 1962, and that in addition to phocomelia, or shortened limbs, children had been born with ear malformations, hemangioma of the forehead and face, malrotation of the gut, rectal and anal atresia, and cardiac anomalies. Reassuringly, the use of the drug before pregnancy had not caused disability (indicating no genetic effects).Footnote ⁵¹ Thalidomide affected thousands of children in at least forty-six countries, but because of delayed drug licensing for sale in the U.S. it reportedly affected less than twenty Americans—despite rather vague testing at the time, with investigational drugs often being simply handled out as samples (Kelsey Reference Kelsey1988).

Following such revelations, many feared that pregnant women were consuming a plethora of deleterious drugs, whose fetal effects would go undetected absent dramatic anatomical differences as with thalidomide. By August 6, 1962, in response to widespread publicity about thalidomide (Carpenter Reference Carpenter2010; Bale Reference Bale and Rima1992), the NF began to “plan for a broad public education program to discourage the use of drugs during pregnancy.”Footnote ⁵² Furthermore, they planned a consultant’s meeting of “six invited guests” and seven NF staff members in September 1962. Participants decided, after much discussion, to initiate a “public education program for women of reproductive age and even adolescents, aimed at better health for better babies.”Footnote ⁵³ As part of this program, “premarital, pre-pregnancy examinations, care with radiation and drug ingestion, and change of habits for the better should be urged. Smoking was high on the list of undesirable habits.” However, “It was noted that there was no scientific proof in human beings for any of the above advice.”Footnote ⁵⁴ All the physicians were pessimistic about teaching medical students “pharmaceutical nihilism.” Attendee Dr. Pfeiffer thought that common drugs such as aspirin and nasal sprays might be related to birth defects. Another attendee, Dr. Noyes, emphasized that the “responsibilities of pregnancy, not its privileges alone, should be stressed” in the NF program.Footnote ⁵⁵ This range of opinions illustrates that medical professionals and NF staff felt the need to publicize the risks of recreational drugs or pharmaceuticals and encourage medical surveillance and healthful living during pregnancy to prevent birth defects, even as they acknowledged at the time there was insufficient scientific evidence to support this position, or to define precisely what advice and guidance to offer.

In the 1960s and early 1970s, researchers set out to illustrate the deleterious fetal effects of maternal behaviors such as smoking, drinking, or consuming drugs during pregnancy (Kandall Reference Kandall1996; Oaks Reference Oaks2001; Golden Reference Gould2005).Footnote ⁵⁶ The NF’s framing of the problem immediately post-thalidomide typically highlighted the profligate use of pharmaceuticals, recreational drugs, and cigarettes by individual pregnant women, rather than the diversity of human developmental outcomes, larger socio-structural concerns about health inequities, physicians’ prescribing practices, or the effects of waste disposal in industrial societies. The model they promoted thus tended to oversimplify the complex, multifactorial, and diverse processes of unusual fetal growth, characterizing it as caused by the misguided habits of individual women who were insufficiently compliant with medical supervision.

Drugs were an area of particular concern in the late 1960s, amidst tumultuous civil rights, countercultural, and anti-war movements. For instance, a 1968 press release with an image of a child affected by thalidomide was titled “Household Drugs May Cause Defects, March of Dimes Physician Warns.” Apgar is quoted, “The word ‘drugs’ has come to mean only the addicting narcotics and barbiturates, or the mind-altering marijuana, LSD, and ‘speed.’ But the truth is that drugs include the whole range of chemicals human beings may take in the form of pills, powders, capsules, injections, inhalants or by absorption through the skin.”Footnote ⁵⁷ Though this quote highlighted effect of chemicals passing into maternal bodies, the emphasis was not exclusively directed at women and development. Around the same time, the March of Dimes also published an advertisement in Life Magazine on the dangers of chromosomal breakages linked to LSD. The piece featured an image of a young man and woman, and the headline read, “Give me one good reason why I shouldn’t use LSD! We can give you 46.”Footnote ⁵⁸ Public health messaging about drugs and individual responsibility to avoid birth defects occurred in tandem with high income inequality, stigmatizing discourses about mothers of color, and fierce opposition from medical organizations like the American Medical Association to extending health care to all citizens (Briggs Reference Briggs2017; Starr Reference Starr1982). It would take the environmental and reproductive justice movements of the 1990s to affirm that people should not only have the right to avoid unwanted pregnancy or prevent infant disability, but should also be enabled to have and raise children, if they wished, in safe and healthy environments (Ross and Solinger Reference Ross and Solinger2017).

Advice on birth defect prevention: Entangled goals of research fundraising and health education

Shortly after changing their mission, the NF circulated educational and press materials, such as an information leaflet for pregnant women printed from January 1961, called “Facts about Birth Defects: Do’s and Don’ts for Expectant Mothers” (see fig. 2).Footnote ⁵⁹ This document highlighted the following categories: consultation with a medical professional prior to pregnancy, x-rays, diet, diseases, powerful drugs, and incompatible blood types.

Figure 2. “Do’s and Don’ts for Expectant Mothers:” Pamphlet Warning Potentially Pregnant Women about Prenatal Risks, c1961Footnote ⁶⁰

In the post-thalidomide publicity campaign, the NF also produced promotional materials aimed at volunteers and the press. Apgar and other NF staff prepared press releases and “Swiss cheese stories”—essentially, birth defect publicity Mad Libs—that were sent to chapters of the March of Dimes to be filled in with local details.Footnote ⁶¹ In addition to reviewing research grants and communicating with scientists, Apgar wrote about the prenatal risks of birth defects for popular magazines such as Good Housekeeping and the Ladies’ Home Journal and published an advice manual in 1972, titled, Is My Baby All Right? (Apgar Reference Apgar1962, 20–22; Reference Apgar1966b, 35; Reference Apgar1966a, 46; Apgar and Beck Reference Apgar and Beck1972). Her diary entries are peppered with interviews and persistent energetic engagement with journalists, including reviewing their articles.Footnote ⁶² Articles covered the following points: 1) the problem of birth defects was greater than previously imagined; 2) many parents worried about having abnormal children; 3) previous ideas of maternal impressions or “tainted blood” were wrongheaded and science showed preventable causes of birth defects; 4) medical science was working towards preventing birth defects in the future, with some successes; and 5) in the meantime, there were actions that expectant mothers could take to ensure a healthy baby, among them avoiding all drugs, x-rays, infections, and excessive drinking and smoking.

For example, in the article “Medicine’s Next Frontier,” in PTA Magazine, Apgar argued that, “the number of defective children is far greater than many of us realize,” and that the NF’s mission was to overcome fatalism and address the “enormous problem of congenital defects” in order to produce “better, healthier children” (Apgar Reference Apgar1962, 20–21). In “New Ways to Save Your Unborn Child,” in the Ladies’ Home Journal, Apgar wrote that though 93 percent of babies were born healthy and normal, seven percent were not and mothers needed to know a great deal more about how to prevent birth defects. She argued that responsibility began at marriage: “When do you begin taking care of your baby? As soon as you’re married.” Such phrases expansively defined even non-pregnant women as at risk—and fetuses or embryos as babies—while conservatively expecting only married women to become pregnant.

Furthermore, drugs of all types were untrustworthy. An article published in May 1963 in the Omaha World Herald trumpeted: “Expert Suspects Even Aspirin in Pregnancy.”Footnote ⁶³ Many followed, warning about drugs as particular dangers to pregnancy:

Apgar’s published advice was sometimes ambivalent about medical supervision, as it emphasized faith in the advice and prescriptions written by physicians, while at the same time recommending that pregnant women not treat their own illnesses and “avoid taking anything that is not food.”Footnote ⁶⁴ The thalidomide tragedy pointed to the perils of having complete faith in the safety of physicians’ prescriptions, highlighted that fetal effects were often most severe in the first trimester before the pregnancy was apparent, and demonstrated that the evidence to support (or reject) behavioral reform for pregnant women was limited. Nevertheless, Apgar’s advocacy in the popular press sometimes portrayed maternal vigilance as sufficient to avoid infant impairment.

Here the dissemination of narratives about a public health crisis of infantile disability and scientific breakthroughs in prenatal prevention were harnessed to prescriptive advice for the potentially pregnant. Public health messaging that assumed infant bodily differences were both common and necessarily undesirable was linked to fundraising for scientific research and parents’ hope for a bright future for their children. Women were told to dismiss treating their own health needs pending the possibility of pregnancy and assume responsibility for ensuring fit citizens even as they lived in polluted and stratified societies largely beyond their control.