Too many Black babies are dying. Birth workers in Kansas fight to keep them alive

WICHITA, Kansas — Peggy Jones-Foxx knows what it takes to raise a baby.

"It's the hardest work I've ever done," she says.

At the Dellrose United Methodist Church in Wichita, she teaches pregnant women, particularly Black women, about that work — with the understanding that, statistically, their babies are less likely to live to see their first birthday than white children.

So she coaches them on how to stay healthy during pregnancy: Are they taking their prenatal vitamins? Do they have strategies for managing stress? Do they know what resources exist if they need help buying healthy food?

On a recent fall afternoon, Jones-Foxx, a licensed practical nurse and president of the Wichita Black Nurses Association, lingers on a PowerPoint slide about the importance of communicating with their doctors. She tells the small group of women to write down any questions they might have ahead of a checkup, and insist that they get answers.

"Sometimes that can be pretty intimidating because we're all a little shy when it comes to professionals," she tells her class. "They ask if you have any questions as they're already walking out the door — but that's your time to ask those questions that may be weighing on you."

After all, she says, it can make a big difference when it comes to keeping Black mothers and their children alive.

These "Baby Talk" prenatal education classes represent a new partnership started this year between the nurses association and the University of Kansas School of Medicine-Wichita's Center for Research for Infant and Birth Survival, or CRIBS. Participants meet for two hours every Wednesday over a six-week period.

Infant mortality declined to a record low nationally in 2020 but rose significantly in Kansas

Nationally, infant mortality declined to a record low in 2020, but in Kansas, it rose 19% — and for Black babies, it surged 58%. Black infant mortality in Kansas is now three and a half times the rate of white infant mortality.

That disparity exists to a lesser extent across the U.S., where the mortality rate for Black babies is more than double that for white babies.

Experts say why such stark disparities exist lie in racial differences in the causes of infant deaths. White and Hispanic infant mortality is most commonly caused by birth defects. Black infant deaths more frequently stem from complications related to being born too early and being underweight.

"The rate of preterm birth is usually about double, consistently, over decades in the U.S." in Black communities, says Dawn Misra, a professor at Michigan State University who studies adverse birth outcomes among Black families. "And even as we've seen the preterm birth rate go down, the disparity remains."

Misra says that, across the U.S., racism is a fundamental factor that contributes to more frequent premature births in Black communities.

"It affects things like segregation of housing, which affects neighborhood environments," she says. "It has all of these different downstream effects."

A pregnant person's pre-existing health issues and challenges accessing prenatal care are also factors.

Sharla Smith, a University of Kansas Medical Center professor who directs the Kansas Birth Equity Network, says both can stem from bias within the medical field. Research shows doctors are less likely to diagnose Black women with endometriosis or refer them for cardiac treatment and are more likely to ignore their pain.

"This is not just about getting an appointment," she says. "Black women are just not heard."

Focusing on the health of Black mothers will be crucial to addressing Black infant mortality going forward, she says.

Public health officials are trying to understand why Kansas saw such a big surge in 2020

One key change that's helped reduce infant mortality in other states is the expansion of Medicaid. Research shows that between 2013-2017, states that expanded Medicaid saw a 50% larger reduction in infant mortality than states that didn't. Experts attribute the decrease to greater access to health care for women of childbearing age. Kansas is among the states that has not expanded Medicaid and has long seen higher rates of infant mortality than the rest of the country.

Now, public health officials are trying to understand why Kansas saw such a big surge in 2020, during the first year of the pandemic. Most suspect the virus played a part - whether from direct impacts to fetal development or stress from job loss and isolation.

Smith says those experiences were more common in Black communities because African Americans were more likely to get COVID-19 and they tended to feel the pandemic's vast economic fallout more acutely.

"All of this has just contributed to the stress on the Black body," she says.

Researchers say poverty can play a role in infant mortality too, but it's far from the only reason. A 1992 study found a stark infant mortality gap between babies born to Black and white parents even when both were college-educated. Among that group, Black babies were nearly twice as likely to die as white babies. And a 2019 paper found an even larger gap: babies born to Black college-educated women died at over three times the rate of those born to college-educated white women.

"If you're only saying it's poverty, then you're missing a huge piece of this," says Michelle Redmond, a Kansas University School of Medicine-Wichita professor and Smith's collaborator at the Kansas Birth Equity Network. "You really have to look at what we define as social determinants of health — it's social, environmental, economic, educational."

Nonprofit offers holistic approach to improve both maternal and infant health to reduce mortality

A few miles away in North Wichita, Sapphire Garcia-Lies is trying to tackle those factors through the Kansas Birth Justice Society, a nonprofit that serves Black, Latino and Native American families. Its approach is holistic, focused on improving both maternal and infant health.

"We can't separate the two," says Garcia-Lies, who founded the center during the pandemic. "They're two sides of the exact same coin."

So the center provides supplies that low-income families might struggle to buy. The building houses a room stacked floor-to-ceiling with free diapers and baby clothes, a community fridge, and a lending library full of books about the birthing experiences of women and queer people of color. There's also a meditation room and a meeting area for parent support circles.

The organization also recruits and trains lactation consultants of color.

"This is the first space in the Wichita area that has lactation consultants of color on staff," Garcia-Lies says. "Because people need culturally affirming care. They need to feel like they belong."

The goal is to help Black, Native American and Latino families, who breastfeed at lower rates than white and Asian families, continue breastfeeding past the newborn stage. Research indicates that extended time reduces the risk of infant death.

"It provides protection from infectious diseases and sudden infant death syndrome," says Lisette Jacobson, a KU School of Medicine-Wichita professor who studies the relationship between breastfeeding and infant health. "To optimize those benefits, you want to be exclusively breastfeeding for at least six months."

Kansas Birth Justice Society will pair families with doulas to offer support from pregnancy to infancy

For families of color, meeting that target often involves navigating more roadblocks than white families do.

"Lots of times, the biggest obstacle is that they have to go back to work really early," Garcia-Lies says. "For some of them, it's two weeks or less after they give birth."

This year, the Kansas Birth Justice Society will pair around 75 families with doulas who'll support them throughout pregnancy, birth and infancy. That can involve advocating for patients during doctor's visits and ensuring they aren't pressured into medical interventions in the delivery room, like labor induction or C-sections.

It's an issue close to Garcia-Lies' heart. She lost her second daughter to stillbirth in 2013 after, she says, a doctor brushed aside red flags she'd brought up about the pregnancy.

"By the time I went for a second opinion, she had passed away," she says. "I was full-term. We were days from her due date."

"And it didn't just happen to me — it's continuing to happen all the time."

Now, she works so that fewer families have to go through that heartbreak.

Reducing racial disparities around infant mortality, she said, requires community-driven support for Black and brown families in a world that's hostile to them.

"We know that as soon as they walk outside these four walls, they're going to face all the same things that they walked in with," she says. "But when they're here, we love on them and we nurture them. And we try to make sure that everyone who walks through those doors understands that they matter."