A growing number of lawmakers across the country are calling for action following a ProPublica investigation that revealed the failures of federal agencies and health care providers to reduce the country’s stillbirth rate.
More than 20,000 pregnancies in the U.S. annually end in stillbirth — the death of an expected child at 20 weeks or more — an alarming figure that exceeds infant mortality and is 15 times the number of babies who died of Sudden Infant Death Syndrome, or SIDS, in 2020. As many as 1 in 4 stillbirths may be preventable, experts say; the figure is even higher as a baby’s due date draws closer.
“With the tremendous advances we’ve made in modern medicine, we should be doing everything we can to prevent Americans from experiencing stillbirth,” Sen. Jeff Merkley, a Democrat from Oregon, said in a statement to ProPublica. “Yet recent reports and data clearly show that we are not living up to that promise in our nation.”
Merkley and other lawmakers have called for additional funding for stillbirth research, data and prevention. They highlighted the increased risk for mothers who have had a stillbirth to suffer complications or die during or soon after childbirth.
“It is absolutely unconscionable that hundreds of expectant and new moms are dying every year from preventable causes in this country. Equally as shocking is the high number of stillbirths that occur throughout the nation,” said Sen. Tammy Duckworth, an Illinois Democrat. “No one should die from preventable causes, and I will continue to work to improve our health system so mothers can feel safe and supported.”
The Eunice Kennedy Shriver National Institute of Child Health and Human Development, which is part of the National Institutes of Health, last year formed a stillbirth working group. In January, the group recommended that the NIH and the Centers for Disease Control and Prevention support additional research on stillbirth causes, risk factors, data and prevention.
The national stillbirth rate in 2020 was 5.74 per 1,000 live births and fetal deaths, according to CDC data. Provisional data for 2021, the most recent available, puts the rate just slightly better at 5.68. Among wealthy countries, the U.S. ranks as one of the worst in reducing its stillbirth rate.
Stark racial disparities have compounded the crisis. Black women are more than twice as likely — and in some states around three times as likely — as white women to have a stillbirth, according to 2020 data from the CDC. That year, CDC data shows the national stillbirth rate for Black women was 10.3, compared with 4.7 for white women.
ProPublica told the story of Brooke Smith, a Black mother from New York who delivered her stillborn daughter after going to the hospital twice in the weeks leading up to her due date with concerns about her baby. Both times doctors sent her home.
“Brooke Smith’s pregnancy experience is heartbreaking and unacceptable, and I heard too many stories like hers while writing the Black Maternal Health Momnibus Act,” said Rep. Lauren Underwood, an Illinois Democrat, playing off the word “omnibus” — a common term for legislation that packages several bills together. “Stillbirth deserves more awareness and resources.”
The “Momnibus” is a set of 12 bills aimed at reducing maternal mortality and health disparities. Underwood, who along with Rep. Alma Adams, D-N.C., supported stillbirth prevention legislation as co-chairs of the Black Maternal Health Caucus, said stillbirth will be a priority for the group this year. The caucus, she said, has focused on stillbirth since its creation in 2019.
In New York, Democratic Sen. Kirsten Gillibrand said in a statement to ProPublica that “Black mothers continue to face significant health care inequities and we must take action.”
Lawmakers had already been working on two key stillbirth bills last year, and though both faltered, they remain determined to see them pass. Gillibrand was one of several legislators who co-sponsored a bill introduced in the Senate in March that aimed to reduce stillbirth rates by funding data collection, awareness efforts, research and fetal autopsy training. Sen. Cory Booker, D-N.J., expects to reintroduce the legislation. The stillbirth rate for Black women in New Jersey and New York is higher than the national average.
The bill was named after Autumn Joy, the stillborn daughter of New Jersey mother and maternal health advocate Debbie Haine Vijayvergiya. For more than a decade, Haine Vijayvergiya has advocated for policy changes to prevent stillbirth. The Stillbirth Health Improvement and Education (SHINE) for Autumn Act would have been the most comprehensive federal stillbirth legislation ever.
“Eleven and a half years ago, I made a promise to Autumn. I promised her that I would protect others from ever knowing this kind of devastation,” she said. “And I cannot bear to think about what the future holds if we do not get SHINE passed one day soon.”
Lawmakers in December came close to passing another stillbirth bill, the Maternal and Child Health Stillbirth Prevention Act, which had been introduced by Merkley and Adams in March and achieved bipartisan support, including from Sen. Bill Cassidy of Louisiana and Rep. Ashley Hinson of Iowa, both Republicans. The legislation would have added stillbirth research and prevention to the list of activities approved for federal maternal health funding. Merkley, who plans to reintroduce the bill, said he remains “passionately committed” to passing it.
Emily Price, the chief executive officer of the nonprofit Healthy Birth Day, championed the legislation. The group is best known for creating a “Count the Kicks” app that helps pregnant people track their baby’s movements and establish what is normal for them. Research shows that after 28 weeks, changes in fetal movement, including decreased activity or bursts of excessive fetal activity, are associated with an increased risk of stillbirth.
Price said she has never been more optimistic about the future of stillbirth prevention in America.
“I do believe that change is coming. It is slow because of how long stillbirth has been ignored in this country, how long it’s been so taboo, how long there has been a belief that babies just die,” she said. “But we know better now.”
ProPublica found that a lack of research, data and fetal autopsies were significant barriers to better understanding stillbirths. No federal agency has launched a national campaign to reduce the risk of stillbirth or adequately raise awareness about it.
A CDC spokesperson said that as the agency learns more about stillbirth, it will work to translate that knowledge into prevention efforts, including possible awareness campaigns.
ProPublica also revealed how a series of government decisions early on in the pandemic led to confusion, low vaccine uptake among pregnant people and allowed misinformation to flourish. Research shows unvaccinated women who contracted COVID-19 during pregnancy faced a higher risk of stillbirth, but pregnant people were excluded from initial clinical vaccine trials. The CDC contributed to the confusion with vague early messaging about whether pregnant people should get vaccinated and waiting eight months to specifically recommend the vaccine to pregnant people.
Sen. Elizabeth Warren, the Massachusetts Democrat who early on had been monitoring the effects of the pandemic on pregnant people, reintroduced legislation in December that called on public health organizations to provide timely guidance to reduce health risks to mothers and babies during a pandemic and also to assess the impact of not including pregnant people in clinical trials for COVID-19 vaccines. That bill stalled.
Warren said she would continue her efforts. “Failure to listen to women, particularly Black and brown women, when they say they’re experiencing pain can have grave consequences — from serious complications to maternal death to stillbirths,” she said.
