Parents lobby to raise awareness of stillbirth in NC

Parents lobby to raise awareness of stillbirth in NC

By Emily Vespa

Brittany Day will never forget when she saw the lifeless bodies of her twin daughters, Sophie and Ruby, on a hospital ultrasound in 2017. The day before, she’d felt some erratic movements. She’d taken that as a sign of healthy babies, but she now knows otherwise. 

After speaking on her experience of having stillborn twins, Brittany Day holds a photo of their birth alongside a picture book she wrote about the grieving process with siblings. Credit: Emily Vespa

In a matter of days, she delivered her stillborn daughters. 

“Their birth was completely silent, but our hearts were screaming with pain,” Day told reporters and others at a solemn news conference last week at the Legislative Building in Raleigh. 

Day, a Fayetteville resident, remembers telling her then-3-and-a-half year old daughter Eliza the crushing news — one of the worst things she said she’d ever had to say out loud. Her daughter took it hard too.

“But I really wanted to be a big sister,” Day remembered Eliza saying. 

At the time, Day said she didn’t know the risk factors for stillbirth, which is the death of a fetus at or after 20 weeks of pregnancy, and she didn’t know that nearly one in four stillbirths can be preventable. 

Day shared her story, and held up the children’s book she wrote about the experience, as she and other families touched by stillbirth tried to raise awareness about a “silent epidemic” they say needs more legislative and community-driven action.

An overlooked crisis

There are about 21,000 stillbirths in the United States every year. In 2022, there were 708 stillbirths in North Carolina

“These are not just numbers,” said Sen. Sydney Batch (D-Raleigh) at the news conference during National Women’s Health Week. “They represent families devastated by the loss of a child.” 

That loss comes with years of heartache and healing, parents said. 

“We’re standing here as not just grieving parents, but advocates for change,” said Ana Van Lepe of Fuquay-Varina, whose son Owen was stillborn in 2015. “We urge our policymakers, health care professionals and the community at large to join us in this effort.”

In the U.S., progress in reducing the stillbirth rate has stagnated since 2005. Van Lepe said stillbirth is largely overlooked as a public health concern. 

“It’s a silent epidemic, and it claims the lives of so many babies,” said Van Lepe, who co-founded a nonprofit called Push for Empowered Pregnancy after her son’s death. “We are heartbroken families just searching for answers.”  

Stillbirth also poses significant risks to maternal health, said Tomeka Isaac, who co-founded the nonprofit Jace’s Journey after the 2018 stillbirth of her son. Women are more likely to experience severe complications or death after stillbirth, which Isaac said “underscores the urgent need for comprehensive stillbirth prevention strategies.” 

State, federal progress

Recent efforts to address stillbirth prevention and maternal health in the state legislature have hit partisan roadblocks, Batch said, but she’s determined to try to change the minds of her Republican colleagues.

With that in mind, Batch co-filed MOMnibus 2.5 (SB838) this month, a new version of similar legislation proposed in previous sessions.

Like its predecessors, MOMnibus 2.5 pays particular attention to Black maternal health disparities. 

Among Black women, the rate of stillbirth is twice that of white women, as is the maternal mortality rate, according to the Centers for Disease Control and Prevention. The CDC says that’s not due to biological differences between races but rather a myriad of underlying causes, including structural discrimination and the quality of health care access.

If passed, MOMnibus 2.5 would create an implicit bias training program for maternal health care professionals. It would also put $1.5 million toward perinatal education programs in underserved areas and $2 million toward educating health workers on how to recognize signs of postpartum complications. 

Though stillbirth prevention efforts have stalled at the state level, there was a step toward that goal last week in the U.S. House. 

The Maternal and Child Health Stillbirth Prevention Act (HR4581), cosponsored by U.S. Rep. Alma Adams (D-Charlotte), who represents North Carolina’s 12th congressional district, would ensure that existing federal funding can be used to fund stillbirth prevention efforts and research.

The bill passed the House 408-3 on May 15. It moved to the Senate, which hasn’t considered the bill yet but in September 2023 passed a companion bill to the House version.

Other bills on maternal health haven’t had the same success in Congress. Adams has previously cosponsored two Momnibus bills that focused on reducing maternal health disparities, but both have died in committee. One of those bills that she reintroduced in May last year is still in committee.

A tracking app

Beyond legislative action, parents who spoke at the news conference emphasized a free, simple way to help catch stillbirth warning signs early.

Tracking fetal movement daily can be important in the final trimester of pregnancy. But studies show some health care providers don’t adequately educate pregnant women on how to identify and respond to abnormal fetal movement. 

That’s what inspired an Iowa stillbirth education campaign called Count the Kicks, which was launched in 2008. In its first 10 years, the state’s stillbirth rate decreased by nearly 32 percent. In 2015, the program launched a free app by the same name that helps parents track fetal movement patterns daily and spot a change. 

“If I had been taught to monitor my movements, be aware of my intuition and have access to an app like Count the Kicks, I wouldn’t be a part of this club that nobody wants to be in,” said Katherine Hyde Hensley, a perinatal psychologist whose daughter was stillborn at full term. “Usually clubs you get to choose. We didn’t get that opportunity.”

Van Lepe is an advocate of Count the Kicks too. 

“While it’s too late for us, it’s not too late for other families in this community,” Van Lepe said.

Bright yellow and orange logo for Count the Kicks, an app designed to help prevent stillbirth

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