Bill to Fund Stillbirth Prevention and Research Passes Congress

This article was originally published by ProPublica.

Update, July 15, 2024: President Joe Biden signed the Maternal and Child Health Stillbirth Prevention Act into law on July 12.

The Senate on Tuesday passed legislation that, for the first time, expressly permits states to spend millions of federal dollars on stillbirth prevention.

The Maternal and Child Health Stillbirth Prevention Act, which passed the House in mid-May, now goes to President Joe Biden, who is expected to sign the measure into law.

ProPublica has spent the past two years reporting on the crisis around stillbirth, the death of an expected child at 20 weeks of pregnancy or more. Every year in the U.S., more than 20,000 pregnancies end in stillbirth. Research shows as many as 1 in 4 stillbirths may be preventable.

The bipartisan bill, which does not allocate any new money, amends the Social Security Act to add stillbirth prevention and research to the programs that can use existing Title V funds dedicated to improving the health of mothers and children.

“This bill is the first step to preventing stillbirths across America, and I will keep pushing to deliver the federal resources needed to bring down the shockingly high rate of stillbirths and maternal mortality in the United States,” said Sen. Jeff Merkley, D-Ore., who credited ProPublica for keeping a spotlight on the stillbirth crisis.

Merkley introduced the bill with Sen. Bill Cassidy, R-La., and U.S. Reps. Ashley Hinson, R-Iowa, and Alma Adams, D-N.C., introduced the measure in the House.

For decades, Adams said, Congress has underinvested in addressing stillbirths, despite having tremendous power to direct money and resources toward research, awareness and effective interventions.

“This does not have to be a silent crisis anymore,” she said, adding that several thousand lives can be saved every year.

“I’m very thankful to ProPublica,” Adams said. “They’ve raised this issue to the forefront of U.S. politics.”

The U.S. has long lagged behind other wealthy countries in reducing stillbirths, but Adams said she hopes that will change.

The bill, which was first introduced in 2022 but never voted on, was reintroduced last July. The Senate passed the measure unanimously, but it was sent back to the Senate because of minor changes made in the House.

Emily Price, CEO of the Iowa-based nonprofit Healthy Birth Day, which has championed the measure, said when Title V was written in the 1930s, stillbirth was left out because of the outdated belief that stillbirths just happen. The bill’s passage, she said, means stillbirth “is finally being recognized for the crisis that it is in America.”

“Now we know better, and we must do better,” she said. “The impact will affect families immediately and for generations to come.”

She said that after ProPublica’s stillbirth series was published, more people opened up about their experiences, and members of Congress and their staffs began sharing how stillbirth had affected their own families and friends.

“It was in these moments that we saw change coming,” Price said.

Fewer than 20 state health departments use money allocated under Title V Maternal and Child Health block grants for stillbirth prevention, Price said.

The new legislation includes examples of services that states can implement, many of which have been adopted in other countries. Programs include 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.

Without a federal law in place, states have had to look for local solutions. Minnesota mother Amanda Duffy, who was at the center of a November 2022 ProPublica story, enlisted the help of Minnesota lawmakers, including newly elected state Sen. Susan Pha, who was pregnant. Pha tested Healthy Birth Day’s Count the Kicks app, which encourages expectant parents to track their baby’s movement in the womb, during her third trimester. She was convinced.

“This needs to be in the hands of every single expectant mom who is pregnant because it is such a powerful tool,” Pha said.

She was lead author of the Minnesota bill to establish a stillbirth prevention pilot program that incorporates Count the Kicks. The Minnesota Legislature passed the bill last month.

North Carolina doesn’t have a state stillbirth prevention law in place, which is part of the reason Tomeka James Isaac had been advocating for the Maternal and Child Health Stillbirth Prevention Act.

In 2018, the North Carolina mother was rushed into emergency surgery. She delivered her stillborn son, Jace, and then nearly died herself. Isaac, a Black woman, is now executive director of the nonprofit Jace’s Journey, which addresses disparities in maternal and infant health. Black women are more than twice as likely to have a stillbirth than white women, and they face an increased risk of dying during or soon after pregnancy.

Isaac traveled to Washington, D.C., last month with Price and other stillbirth families to advocate for the bill’s passage and a second bipartisan stillbirth bill pending in Congress. That bill, the Stillbirth Health Improvement and Education (SHINE) for Autumn Act, proposes $45 million over the next five years for improving data collection, stillbirth research, awareness and education, as well as supporting training for fetal autopsies.

Jessica Brady Reader, a former congressional aide, is now pushing for SHINE. After Reader gave birth to her stillborn daughter, Francesca, in 2021, she and her husband parked in front of the funeral home to read their daughter a nightly bedtime story until her body was cremated and they could bring her remains home.

“I view this as the beginning, not the end,” she said. “Passing SHINE is a necessary next step. We can’t stop.”