When Babies Die Before Taking Their First Breath
Federal lawmakers this week introduced a bill aimed at reducing the more than 20,000 pregnancies that end in stillbirth every year in the U.S.
The Maternal and Child Health Stillbirth Prevention Act would explicitly allow federal funding earmarked for mothers and children to also be used for stillbirth prevention, including initiatives that encourage expectant parents to be aware of and track their babies’ movements in the womb.
ProPublica has spent the past 18 months reporting on stillbirth, the death of an expected child at 20 weeks or more of pregnancy. The investigation found that a lack of comprehensive action, research and awareness, as well as stark racial disparities, have all contributed to a stillbirth crisis that exceeds infant mortality and far eclipses the number of babies who die of Sudden Infant Death Syndrome, or SIDS, each year. Research shows as many as 1 in 4 stillbirths may be preventable. But while other wealthy countries have been able to reduce their stillbirth rates, the U.S. has fallen behind.
“Stillbirth upends the lives of individuals and families from all demographics across the United States — devastating parents and families and increasing the risk of maternal mortality and morbidity,” Sen. Jeff Merkley, D-Ore., said in a statement on Tuesday.
“Investigative reporting has helped call public attention to this major public health concern,” he added, “and I will do all I can to address this crisis, including introducing the bipartisan Maternal and Child Health Stillbirth Prevention Act.”
Merkley and other lawmakers introduced a similar bill last year, but it never came up for a vote. On Tuesday, Merkley and Sen. Bill Cassidy, R-La., reintroduced the legislation, with more than a dozen lawmakers from both sides of the aisle joining as cosponsors. U.S. Reps. Ashley Hinson, R-Iowa, and Alma Adams, D-N.C., a co-chair of the Black Maternal Health Caucus, introduced the measure in the House on Wednesday.
“Increasing access to stillbirth prevention saves the lives of babies and mothers,” said Cassidy, who is also a doctor.
The Iowa-based nonprofit Healthy Birth Day, which created the Count the Kicks app that helps pregnant people track their baby’s movements, championed the legislation.
“We’re absolutely thrilled because this legislation means lives saved,” said Emily Price, the group’s CEO.
Despite working for years to try to raise awareness around stillbirth prevention and the Count the Kicks program, Price said she has heard from several state health departments that did not know that they could use money allocated under Title V Maternal and Child Health block grants for stillbirth reduction. This bill amends the Social Security Act to make it clear to public health officials that they can.
The measure would not provide additional funding, but in clarifying that public health agencies can use existing funds in these ways, lawmakers and advocates believe they can make progress in reducing the number of stillbirths.
Price said she is optimistic about the bill’s passage, in part because she said she has witnessed a recent shift around stillbirth awareness. Advocates and parents, she said, have “had enough.”
In March, the National Institutes of Health released a report that mirrored many of ProPublica’s findings. It called the U.S. stillbirth rate “unacceptably high” and laid out several recommendations to address it.
Price said her group circulated ProPublica’s stories in Washington to help lawmakers better understand the stillbirth crisis and its effects on families. Some of them had already read the stories, she said, and told her, “I understand what you’re fighting for.”
Emily Eekhoff, an Iowa mother, credits the Count the Kicks app with saving her daughter’s life. One morning in May of 2017, she said she noticed her baby’s movements had slowed from their usual pace. She tried pressing down on her stomach and drinking juice, but nothing helped. Her doctor told her to head to the hospital, and after monitoring and an ultrasound, she had an emergency cesarean section.
She didn’t realize how close she had come to delivering a stillborn baby, she said, until a nurse asked her how she knew to come in. When she told her about the app, she said the nurse could hardly believe it. Her daughter’s umbilical cord was wrapped tightly around her neck three times, and a doctor later said that if she had waited much longer to be seen, it might have been too late.
“One day could have made the difference between having her here or burying her,” Eekhoff said.
In addition to raising awareness about the importance of fetal movement, the legislation calls on health departments to fund other stillbirth prevention initiatives. Some of those include improving discussions on whether an expectant parent with certain risk factors should be delivered early, encouraging safe sleeping positions while pregnant and better screening for babies that are not growing as expected.
The American College of Obstetricians and Gynecologists and March of Dimes are among several organizations that endorsed the legislation. Dr. Verda J. Hicks, ACOG president, said in a statement that supporting the bill is part of the group’s “longstanding efforts to achieve the goal of preventing stillbirth” and will help doctors develop appropriate tests and interventions.
The legislation, she said, will also pave the way for more research and better data, especially when it comes to understanding the causes of a stillbirth and the racial and ethnic inequities. ProPublica found that Black women are more than twice as likely — and in some states about three times as likely — as white women to have a stillbirth. They also face nearly three times the risk of dying during or soon after childbirth.
“There’s no reason why the United States should have worse rates of stillbirth and maternal mortality than most wealthy nations,” Adams said. “The solutions exist, we just need the political will.”
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