For a country that claims to value life, the United States has allowed stillbirth to remain in the shadows of discussions about public health and reproductive justice.
The U.S. loses over 20,000 babies to stillbirth each year, with many preventable. Yet stillbirth remains largely invisible in policy and public discourse, and families are left to deal with these tragic and costly losses with little support.
A new documentary from ProPublica, Before a Breath—based on the outlet’s Pulitzer Prize finalist reporting—follows three mothers who turn their grief from stillbirth into advocacy for safer pregnancies and better outcomes for expecting parents.
The overall rate of stillbirth in the U.S. has been declining over several decades, but the rate of decline has slowed significantly in recent years; and some recent studies suggest rates may be higher than previously reported.
In keeping with other trends in maternal and infant health, we see a persistent racial disparity, in which Black women experience stillbirths at a rate roughly twice as high as white women.
A key factor in the prevalence of stillbirth is the failure of healthcare systems to listen to women.
… Each woman knew something was wrong during her pregnancy, yet her concerns were dismissed or minimized.
In Before a Breath, filmmaker Nadia Sussman follows three women’s stories related to their experiences with and responses to stillbirth: Kanika, a maternal health advocate and doula trainer who experienced stillbirth in 2010, Debbie, an activist fighting for stillbirth prevention on the federal level after her daughter’s death, and Stephanie, whom the film follows through a subsequent pregnancy after her own stillbirth loss.
Across the stories, each woman knew something was wrong during her pregnancy, yet her concerns were dismissed or minimized. Studies show that stillbirth incidence is connected to larger patterns of medical paternalism, in which there is a systemic culture of disbelief toward women’s bodily knowledge and intuition.
Mirroring the lack of attention paid to individual pregnant women’s concerns about their health, an important factor in this country’s racialized maternal morbidity and mortality crisis as well, the film shows the indifference of policymakers to the plight of women advocating for themselves and their babies.
Through Debbie’s story, audiences see how for seven years, mothers who have experienced stillbirth have been fighting unsuccessfully to get Congress to pass the SHINE Act, which would improve data collection and pave the way for better preventative measures.
But the battle for prevention, as well as for support for families who have experienced stillbirth, can be fought on several levels.
At the hospital and healthcare systems level, pregnant people need patient-centered, responsive maternity care.
At the local, state and federal levels, policymakers need accurate data to pass evidence-based measures that increase awareness, educate healthcare providers and patients, address preventable deaths and support families.
Our exposure to Before a Breath occurred as part of a larger series of events on reproductive justice hosted by Tulane University scholars in collaboration with local community partners. The screening occurred in partnership with Saul’s Light, a Louisiana-based organization advocating on behalf of NICU and bereaved families, and was followed by a panel discussion with Sussman, Saul’s Light representatives and Joni Hess, a local journalist who experienced her own stillbirth in 2019. During the panel, audience members learned about local responses to stillbirth, such as the Louisiana legislature’s passage of the stillbirth tax credit that helps families cover the financial costs of stillbirth.
The film and panel discussion made a crucial argument for the fact that stillbirth prevention deserves the same urgency as other maternal and infant health priorities. It also provided a deeply moving example of how research and data can combine with storytelling to normalize grief and conversation around this issue, as well as to recognize that maternal and fetal health are inseparable from social, racial and reproductive justice.
Stream the full documentary:
