Time doesn’t heal all wounds, especially the loss of a child. That’s what Erica Bailey often thinks about as she drops off educational materials at a local hospital. The pamphlets introduce expecting mothers to
Count the Kicks , a free app to track a baby’s health by monitoring the frequency and pattern of fetal movements during the third trimester of pregnancy. It’s a simple practice Bailey knows can save lives. In 2020, near the end of Bailey’s first pregnancy, her son’s movements changed. Misinformed about what that meant, Bailey didn’t report it until movement stopped entirely. By then it was too late. On March 5, Bailey gave birth to a 7-pound, 6-ounce baby boy. “Everything was perfect except the heartbeat,” Bailey recalled. A week later, COVID shut everything down. “We were lucky to have a funeral,” she said. “Quote, lucky. As lucky as anybody can be to have a funeral.” After the birth, Bailey said, she was discouraged from getting an autopsy, a decision she quickly regretted because it meant she wouldn’t get immediate answers. Instead, she blamed herself. No matter how much time passes, Bailey said, she hasn’t healed from the loss of her son Rhoan, who would now be five. But she’s learned a lot and finally shed the burden of self-blame. And if there could be a silver lining in these situations, it was her newfound commitment to Count the Kicks, which empowered her during her second pregnancy to report when movements slowed at 36 weeks. Ultimately, that decision saved her second child’s life. Now she works to educate mothers by sharing materials, setting up question-and-answer sessions with subject matter experts or by meeting one-on-one just to provide support. “I've been on both sides of where I was completely in the dark, was completely blindsided, and then I’ve also been empowered with information where I was able to speak up for myself and save my son’s life,” Bailey said. According to Count the Kicks, the still-born rate in Missouri is 5.71 per 1,000 births. In Kansas, the rate is 5.32 per 1,000 births. The fetal and infant mortality rate in the Kansas City metro remains above the rest of the country — 7 out of every 1,000 babies dying, compared to 5.6 nationally. Among Black babies, those rates are 2.5 times worse than for white babies. That’s according to a
new Fetal and Infant Mortality Review report issued by Nurture KC, an organization that works with pregnant women and children in the 12 ZIP codes with the highest rates of infant mortality. This time they’ve released more than 20 years of data on trends and possible solutions.
Progress is piecemeal
In two decades of work,
Nurture KC ’s review team has looked at over 404 cases, said Tracy Russell, the organization’s CEO. The team of physicians, social workers and community members meets with moms like Bailey to discuss their individual situations, from both a medical and social perspective. The hope is to create a comprehensive view of what occurred during pregnancy and ways they can improve resources to prevent similar outcomes in the future. Many of the findings aren’t surprising — mortality rates remain steady and disparities are still prevalent — but the number of preventable deaths might be a shock. “Believe it or not, 16% of infant deaths in Kansas City that were not of natural causes are linked to unsafe sleep practices,” Russell said, “which is unbelievably high and in my mind, one of the most curable causes that we can address.”
One study found that nearly one in four stillbirths in the U.S. may be preventable. For pregnancies that last 37 weeks or more, the figure jumps to nearly half. Some of Nurture KC’s recommendations are already in place. Bailey convinced North Kansas City Hospital to integrate Count the Kicks into its standard for prenatal care. In Iowa, where Count the Kicks first launched, there was a 32% reduction in the stillbirth rate between 2008 and 2018, following integration into the standard of care. And
six local hospitals are safe-sleep certified and ready to make sure families are prepared to take care of their kids. “Often it's very small hurdles that can make a big difference,” Russell said. “If a family doesn't have a crib and can't afford a crib, how are we expecting them to practice safely?” Only two hospitals were certified before Nurture KC started this effort. “You’ve got a captive audience in the hospital,” Russell added. “That’s where you begin to establish that culture.” The 20th-anniversary report also notes improvements in tracking mental health concerns and an increase in women accessing prenatal care. That’s a big deal to Russell. But despite the improvements, she noted, 46% of women did not initiate prenatal care in the first trimester and some not at all. The changes made due to these recommendations have led to marginal improvements in overall infant and fetal mortality rates, despite recent trends pushing those figures up again. Other recommendations will take a bit more effort. Nurture KC also recommends a standardized process for examining stillborn infants, something that would have taken the responsibility of requesting an autopsy off of Bailey and other mothers like her. In her case, it wasn't until months later when she connected with a physician from Yale who studies placentas and stillbirth that she learned her son had an undetected small placenta.
A new review system
The recommendations issued in the new report will be the last from Nurture KC’s fetal and infant mortality review. That’s because last year, Missouri
earmarked $1.83 million to create its own statewide review process. Martha Smith, Missouri’s director for maternal and child health, said the state will be split up into seven regions based on a five-year average of fetal and infant deaths, with seven local public health agencies leading the way. Kansas City and surrounding counties will report data to Jackson County Public Health. Each region will share data with the National Center for Fatality Review and Prevention, which will help compare results locally, create recommendations, and see how other state efforts might benefit Missouri. “There is not another state that we're aware of, or that the National Center is aware of, that has a statewide network in this way,” Smith said. “They feel like this is a gold standard for how they want to see FIMR done from a statewide perspective.” The move doesn’t come without reservations for people like Russell, who is concerned because public health departments are already overworked. She also wondered about the state’s ability to return locally relevant recommendations when grouping regions. Still, Smith said, she sees an opportunity with the new system. Practices like Count the Kicks and safe sleep education are feasible changes at a local level. But increasing access to care, addressing root causes such as a lack of transportation or general confusion around the health care options — those require system changes. And even the local efforts face pushback. At some hospitals, Bailey encounters administrators who are resistant to sharing materials, sometimes for reasons such as a lack of branding. A state-driven effort could apply some pressure to convince holdouts. But with the number of infant deaths still stubbornly high, the state faces an uphill climb just to bring Missouri even with the rest of the country. Smith says the state-coordinated system, in tandem with local efforts from folks like Bailey and Russell, could cut down on preventable deaths and finally lead to some notable changes in mortality rates. Smith said she would like to have everything in place to start doing reviews in May, with the hope that by the end of the second year, they will have fully established community review teams to turn findings into appropriate recommendations for municipality, county and state recommendations. Bailey knows these recommendations won’t heal the wounds she and other mothers who've lost a child feel, but it’s a start. “We can do better as a city, state and country,” Bailey said. “We should be doing better but we need resources and we need legislation to help get resources to the people who need it.”
