The Stillbirth Calamity: Reenergized Congressional Relief Efforts

Stillbirth (intrauterine fetal demise), a devastating pregnancy outcome, comprises 1 in every 175 deliveries at or beyond the 20th week of gestation. ¹ An approximate annual total of 21,000 stillbirths has been repeatedly observed in the United States. ¹ Regrettably, a significant proportion of these tragic events remain unexplained even after a thorough postmortem evaluation. ¹ The U.S. National Center for Health Statistics defines stillbirth as the “delivery of a fetus who shows no signs of life as indicated by the absence of breathing, heartbeat, pulsation of the umbilical cord, or definite movements of voluntary muscles.” ² Although stillbirths occur in women of all ages and income levels, they do occur more frequently in non-Hispanic Black women. ¹ A retrospective assessment of relevant 2020 data reveals stillbirth to be twice as common among non-Hispanic Black women as compared with non-Hispanic White and Asian or Pacific Islander counterparts. ¹ In this Commentary we review recent Congressional initiatives to enhance federal research efforts into the etiology of stillbirth with an eye toward curtailing its very occurrence and the tragic implications thereof.

As per the American College of Obstetricians and Gynecologists and the Society for Maternal-Fetal Medicine, stillbirth constitutes one of the most common adverse outcomes of pregnancy, occurring in 1 in 160 deliveries in the United States. ³ As noted in other developed nations, the most prevalent risk factors associated with stillbirth are “non-Hispanic black race, nulliparity, advanced maternal age, obesity, preexisting diabetes, chronic hypertension, smoking, alcohol use, a pregnancy achieved via assisted reproductive technology, multiple gestation, male sex, unmarried status, and past adverse obstetrical history.” ³ While some of the risk factors in question may be modifiable by the individual (e.g., smoking), most are not. ³ Just as importantly, studies of the specific causes of stillbirth have been “hampered by the lack of uniform protocols to evaluate and classify stillbirths and by decreasing autopsy rates” ³ It follows that a significant proportion of stillbirths “remains unexplained even after a thorough evaluation.” ³

In a recent first, Congress weighed in on the challenge of stillbirths in the Consolidated Appropriations Act of 2022 [Public Law 117-103] by mandating the Department of Health and Human Services (HHS) to establish a dedicated “Stillbirth Task Force.” ⁴ The Task Force was to examine “Current barriers to collecting data on stillbirths throughout the United States, Communities at higher risk of stillbirth, The psychological impact and treatment for mothers following stillbirth, and Known risk factors for stillbirth.” ⁴ In compliance, the appointed “Stillbirth Working Group of the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) Council” issued its report on March 15, 2023. ⁵ Broadly stated, the report recommends 12 priorities to guide “HHS agencies (led by the National Institutes of Health and the Centers for Disease Control and Prevention), together with families, state and federal public health agencies, researchers, providers, professional societies, and advocacy organizations in alleviating the tragedy of stillbirth.” ⁵ Its recommendation addressed way to improve the collection of “representative, comprehensive, reliable” data on stillbirths, to consider racial, geographic and other disparities, to support more research on the psychological impact of stillbirths, and to provide more support for research on “research on known and unknown risk factors and physiologic mechanisms.” ⁵ Going forward, the NICHD-crafted “Road to Stillbirth Prevention” initiative is meant to support research into the causes of stillbirths and its prevention. ⁵

The Maternal and Child Health Stillbirth Prevention Act of 2022 [S.3797/H.R.7011] was first introduced by Sen. Jeffrey A. Merkley [D-OR] and Rep. Alma S. Adams [D-NC-12] on March 10, 2022. ⁶ As written, the bill was to permit states to make use of the Title V Maternal and Infant Health Block Grant for stillbirth prevention programs and thereby expand “the scope of the Maternal and Child Health Services Block Grant to include research and activities to prevent stillbirths.” ⁶ The new legislation also saw to the inclusion of services that states could implement in a manner commensurate with that adopted by other nations. ⁶ Examples include but are not limited to tracking fetal movement, improving the timing of birth when risk factors are present, encouraging safe sleep positions during pregnancy, supporting pregnant patients to stop smoking, and monitoring for signs that the fetus is not growing as expected. ⁶ Having been referred to the Senate Committee on Finance and to the House Subcommittee on Health, the Maternal and Child Health Stillbirth Prevention Act of 2022 was never brought to a vote during the 117th Congress. ⁶ A similar fate befell the Stillbirth Health Improvement and Education (SHINE) for Autumn Act of 2022 [S.3972/H.R.5487] bill, one introduced by Cory A. Booker [D-NJ] and Jaime Herrera Beutler [R-WA-3]. ⁷ A reintroduction of the “SHINE” bill [S.2647/H.R.5012] on July 27, 2023 also never came to a vote l. ⁷ Among its more notable recommendations, the “SHINE” bill instructed the Department of Health and Human Services to “implement a fellowship program to provide training in perinatal autopsy pathology and otherwise support research on stillbirths and fetal autopsies.” ⁷

It was not until the 118th Congress that we saw some legislative progress: the Maternal and Child Health Stillbirth Prevention Act of 2024 [S.2231/H.R.4581] was reintroduced by Sen. Jeffrey A. Merkley [D-OR] and Rep. Ashley E. Hinson [R-IA-2] on July 11 and 12, 2023, respectively. ⁸ By September 30, 2023 the Senate passed the bill without amendment by Unanimous Consent. ⁸ In so doing, the Senate expressly permitted states, for the first time, to make use of federal dollars with stillbirth prevention in mind. ⁷ The House, for its part, followed suit on May 15, 2024, with an overwhelming bipartisan vote of 408-3. ⁸ Although the bipartisan bill in question does not allocate new funds to the prevention of stillbirths, it amends Title V of the Maternal and Child Services Block Grants of the Social Security Act of 1935. Specifically, the bill assures the authority to add stillbirth prevention and research to those programs that are making use of existing Title V funds that are dedicated to improving the health of mothers and children. ⁸ It was on July 12, 2024 that the President signed the Maternal and Child Health Stillbirth Prevention Act of 2024 into law.

At the time of this writing, one must concede that the tragedy of stillbirths remains largely unaltered, and that progress has been all but elusive. Absent critical advances in the characterization of the pathophysiology of stillbirths, progress cannot be anticipated. Recently derived insights from autopsies of the fetus and placenta give rise to the hope that this line of investigation will, before too long, yield novel critical insights heretofore infeasible. ⁹ Given the magnitude and significance of the stillbirth challenge, continued Congressional involvement remains essential. Viewed in this light, the enactment of the Maternal and Child Health Stillbirth Prevention Act of 2024 is best deemed to constitute a modest beginning in need of substantial future expansion.