The U.S. has the highest rate of maternal mortality in the developed world. Yet these deaths of women from causes related to pregnancy or childbirth are almost invisible. When a new or expectant mother dies, her obituary rarely mentions the circumstances. Her identity is shrouded by medical institutions, regulators and state maternal mortality review committees. Her loved ones mourn her loss in private. The lessons to be learned from her death are often lost as well.
The inability, or unwillingness, of states and the federal government to track maternal deaths has been called “an international embarrassment.” To help fill this gap, ProPublica and NPR have spent the last few months searching social media and other sources for mothers who died, trying to understand what happened to them and why. So far, we’ve identified 120 pregnancy- and childbirth-related deaths for 2016 out of an estimated U.S. total of 700 to 900. Together these women form a picture of maternal mortality that is more racially, economically, geographically and medically diverse than many people might expect. Their ages ranged from 16 to 43; their causes of death, from hemorrhage to infection, complications of pre-existing medical conditions, and suicide. We were struck by how many perished in the postpartum period, by the number of heart-related deaths, by the contributing role sometimes played by severe depression and mood disorders — and by the many missed opportunities to save lives.
ProPublica and NPR plan to expand our 2016 photo gallery as we find more women and hear from more families. If you know of someone who died, please tell us here. Meanwhile, we highlight 16 women with portraits of their lives and deaths. Their stories are a reminder of just how much is lost when a mother dies. Examined together, these private tragedies point to a much bigger public health problem, and underscore the potential repercussions for women and families as Republicans in Congress push to revamp the health care system and roll back Medicaid.
See the gallery by clicking here.
What we did
To compile our list of women who died from pregnancy- and childbirth-related causes, ProPublica scoured social media — primarily public posts on Facebook and Twitter and the crowdfunding sites GoFundMe and YouCaring — and then verified the women’s basic information using obituaries and public records. Other names came to us through patient advocacy organizations and through a call-out shared by ProPublica and NPR. We identified more than 450 deaths since 2011, including 120 in 2016. We then worked with a team of graduate-student journalists from New York University to reach out to family members for additional information.
In many cases, persuading family members to participate in our project was hard. As we learned, loved ones are often too consumed with grief, and sometimes with guilt, to tell their stories. They may feel a social stigma and prefer to keep the circumstances to themselves. Or they’re counseled by lawyers to stay silent. Although many women’s photographs were widely distributed on GoFundMe and other public sites, we decided only to publish pictures of women whose family members gave their permission or whose stories had been previously told in news articles.
How we defined a maternal death
We used the same definition as the Centers for Disease Control and Prevention: “the death of a woman during pregnancy or within one year of the end of pregnancy from a pregnancy complication, a chain of events initiated by pregnancy, or the aggravation of an unrelated condition by the physiologic effects of pregnancy.”
Who we didn’t find
While social media allowed us to find many women whose stories would have been lost in the past, this method falls short at capturing women who live and die on the margins, including homeless women and undocumented immigrants. Black expectant and new mothers, who die much more often than whites, are less likely to have their stories told on social media. It also can be difficult to determine whether the deaths of women in the later postpartum period are related to childbirth.