ILLUSTRATION BY ABIGAIL GOH | PHOTOS BY JAY FRAM

Every year in St. Louis, the infants who die before their first birthday could have one day populated 12 kindergarten classrooms. That’s according to Flourish St. Louis, an infant mortality reduction initiative supported by the Missouri Foundation for Health.

In scientific terms, the city of St. Louis has an infant mortality rate of 10, meaning 10 of every 1,000 infants die before they turn 1. That’s substantially higher than the U.S. infant mortality rate of 5.9, which itself is notably higher than the rates in most other high-income nations.

Even so, it might seem easy to dismiss infant mortality as a problem of developing nations that lack the infrastructure, the wealth and the advanced medical care that exist in the United States. Consider the developing countries of Nicaragua and Peru, both of which have infant mortality rates of 18, or Vietnam, where the rate is 17.

But infant mortality rates that high are not limited to developing nations. In fact, some U.S. communities have infant mortality rates that are the same—or higher—than those in many developing countries. According to Flourish St. Louis, three St. Louis ZIP codes have infant mortality rates of 18 or higher, just like Nicaragua and Peru.

“Infant mortality rates in St. Louis are unacceptably high,” says Ebony Carter, MD, MPH, maternal-fetal medicine specialist at the Women & Infants Center, a collaboration by Barnes-Jewish Hospital, Washington University Physicians and St. Louis Children’s Hospital. “In some ZIP codes in north St. Louis city, they rival rates in the developing world.”

From neighborhood to neighborhood, though, there is huge variation, with many areas of St. Louis County having rates below the U.S. rate of 5.9. Suburban, majority-white neighborhoods have the lowest rates, while urban neighborhoods with many low-income Black residents have the highest.

This racial disparity mirrors national numbers. According to the U.S. Centers for Disease Control and Prevention, the U.S. infant mortality rate among non-Hispanic white babies is 4.9. For non-Hispanic Black babies, the rate is more than twice as high, at 11.4. It’s even worse in St. Louis, with rates of 12 and 15 for Black infants in the county and city, respectively, compared with just 4 in white infants. These disparities cut across socioeconomic and educational lines.

“For African American women, affluence is not protective,” Carter says. “A highly educated African American woman with high socioeconomic status is more likely to have a preterm birth, which is a major driver of infant mortality, than a less educated white woman with lower socioeconomic status.”

There is no single cause for these disparities, and there is no simple solution. But through a variety of programs, initiatives and research projects, Carter and others are working hard to make progress—to ensure that many more families can celebrate their babies’ first birthdays.

They are working in St. Louis and also in nearby rural regions, where the risk of preterm birth and infant mortality is also high—in neighborhoods with rates higher than anything seen on a national level since the early ’70s. Neighborhoods that desperately need to see progress.

“Just like progress is made with cancer or heart disease, if we put our minds and our science and our money behind it, we can make a difference,” says Molly Stout, MD, a maternal-fetal medicine specialist at the Women & Infants Center.

“She did everything she needed to do”

Carter describes a patient she recently cared for who was at high risk for poor pregnancy and birth outcomes. She was an African American woman with low income and type 2 diabetes who’d lost her health insurance, even though she worked 60 hours a week as a nurse’s aide. As a result, she could no longer afford insulin, so she switched to the drug metformin, which wasn’t enough to control her blood sugar levels.

In the midst of all this, the patient had an unplanned—but highly desired—pregnancy. During her initial prenatal visit with Carter, her hemoglobin A1c level, a blood sugar measurement used to monitor people with diabetes, was 13. Ideally, it would be below 6, and Carter says a reading higher than 10 in a pregnant woman increases the risk of having a baby with a congenital defect by 25%. And congenital heart defects are one of the most common causes of infant mortality, according to the U.S. Centers for Disease Control and Prevention. The most common cause, in fact, topping even preterm birth nationwide, though preterm birth is a bigger contributor in St. Louis.

The good news is that the patient was able to enroll in Medicaid because in Missouri, pregnant women whose family incomes do not exceed 196% of the poverty level are eligible. Carter helped her patient get her diabetes under control with dietary changes, exercise and insulin, and she delivered a healthy baby. The bad news? Missouri’s Medicaid coverage for pregnant women ends 60 days after they deliver.

“She came to every visit and did everything she needed to do,” Carter says. “And then what happens? She loses her Medicaid postpartum and immediately finds herself right back in her old situation. And when will she have full access to the medical system again? During her next pregnancy.”

And there’s no guarantee the outcome will be a good one next time. Carter and Stout both emphasize the importance of providing good medical care to women before they become pregnant. This is particularly important for women with chronic conditions such as diabetes, heart disease, substance abuse or depression. But when women lack health insurance, getting the care they need simply may not be possible. Among wealthy countries, this problem is unique to the United States, where nearly 9% of the population is uninsured. Other high-income nations guarantee health coverage to virtually all of their residents.

Lack of insurance is certainly a contributor to the high infant mortality rate in some St. Louis ZIP codes. But it’s far from the whole story. As noted, there are stark racial disparities nationwide, regardless of income or education level, and those disparities are even more pronounced in St. Louis. There is also evidence that psychosocial stress may contribute to worse pregnancy outcomes, and Black women who face everything from microaggressions to large-scale structural racism—are more likely to experience this stress. “Although Black women and Black bodies are no different from non-Black women, the amount of toxic stress that Black communities and Black women live with—whether they are professional women or living in poverty—contributes to these disparities,” says Yvonne Smith, director of patient care services for the Women & Infants Center.

The power of the group

Preventing preterm birth and the related issue of low birth weight would go a long way toward reducing the infant mortality rate, as these two factors are estimated to account for nearly one-fifth of infant deaths nationwide.

In the city of St. Louis, 12% of infants have low birth weights, and there is again a large racial divide, with 16% of Black infants but just 8% of white infants having low birth weights. In St. Louis County, 14% of Black infants and 7% of white infants have low birth weights. “There have been numerous studies and interventions to address preterm birth, but the disparity between Black and white women tends to persist,” Carter says.

However, a few years ago, a study on group prenatal care, in which pregnant women receive their medical care in small groups rather than individually, had promising results. It appeared that women overall—and especially Black women—who participated in group prenatal care had lower preterm birth rates.

Carter was intrigued by this study’s findings, and she then led a team of investigators who pooled and analyzed data from 14 trials comparing group prenatal care with traditional care. For women overall, the results were disappointing, with no significant differences between the two types of care in terms of preterm birth rate or admission of a newborn to a neonatal intensive care unit. However, when the researchers analyzed the data by race/ethnicity and included only studies considered to be high-quality, they did find a reduction in the preterm birth rate among African American women.

“I think that if you are an affluent white woman living in west St. Louis County and you participate in group prenatal care, you’re really going to enjoy it. It’s a wonderful, positive experience,” Carter says. “But is it going to change your birth outcomes? Probably not because a positive birth outcome was likely assured anyway. But if you are an African American woman with low income living in north St. Louis, and your baby is at high risk for preterm birth and infant mortality, group prenatal care is much more likely to move the needle for you.”

The Women & Infants Center offers group prenatal care for three types of pregnant patients: teens, women with diabetes and medically low-risk women who are primarily African American and therefore at increased risk of preterm birth. The teen and low-risk adult groups follow a model called CenteringPregnancy, in which small groups of women—eight or so—meet for two hours every two to four weeks throughout pregnancy. They socialize, check and record their own weight and blood pressure, and briefly meet individually with an obstetric specialist.

The majority of each group session is devoted to a facilitated discussion that covers important health topics and gives the women an opportunity to ask for and offer support and advice among themselves. “It’s not just the physician as the expert telling you what you should or should not do,” Carter says. “It’s the power of the collective. It’s all of the women in the group. So you have the support and knowledge of other women who are going through the same thing with you.”

Carter performed a retrospective analysis, published in 2017 in the Journal of Perinatology, comparing women who delivered full-term babies after participating in group prenatal care at the Women & Infants Center with women who delivered full-term babies after receiving traditional prenatal care. The large majority of the women were African American, and all were publicly insured. Carter found that 11.1% of infants born to women who received group care were low-birth-weight compared with 19.6% of infants born to women who received traditional prenatal care—a 43% difference.

A HIGHLY EDUCATED AFRICAN AMERICAN WOMAN WITH HIGH SOCIOECONOMIC STATUS IS MORELIKELY TO HAVE A PRETERM BIRTH THAN A LESS EDUCATED WHITE WOMAN WITH LOWER SOCIOECONOMIC STATUS.

With support from the Missouri Foundation for Health, the St. Louis Integrated Health Network is now leading the St. Louis CenteringPregnancy Community, composed of the Women & Infants Center, St. Mary’s Hospital and Affinia Healthcare. To help meet the needs of participants, the network is working to offer psychosocial health intervention in its group prenatal-care program. Carter says this kind of intervention is important because disparities in preterm birth rates likely are driven in part by unmet mental-health needs related to adverse childhood experiences, trauma, structural racism, psychosocial stress and depression.

Mental-health providers, obstetric providers, community leaders and an advisory group of women who previously received group prenatal care collaborated to enhance the CenteringPregnancy curriculum with a pilot psychosocial health component that is grounded in cognitive behavioral therapy and mindfulness techniques. A small number of women recently completed this new program, and the collaboration has applied for funding to further study this kind of intervention among a larger group of participants. “In group care, if I am doing my job well, I have very little to say because the wisdom and the knowledge are coming from the women,” Carter says. “Say there is a woman with gestational diabetes who is starting insulin and is terrified to give herself a shot. My counseling on the importance of insulin to optimize her pregnancy outcome is not nearly as powerful as the words of a group member who’s managed her own type 2 diabetes for five years and shares her experiences, encouragement and support to her scared fellow group member. The solution to the community’s problems rests within the community. It’s just— are we listening?”

Far from care

Rural areas in Missouri and surrounding states may seem to have little in common with urban St. Louis. But pregnant women in rural regions face many of the same issues as their urban counterparts. This includes a lack of access to health care and an increased rate of chronic diseases, both of which contribute to an elevated risk of preterm birth.

“Both urban and rural women have very large and prohibitive barriers to getting care, but the reasons why are a little bit different,” Stout says. Lack of insurance affects both groups of women, but those in rural regions have another hurdle: distance.

For example, a pregnant woman with a cardiac condition should see a cardiologist who is comfortable managing the disease during her pregnancy. But if she lives in a rural area, she may not live anywhere near a heart specialist. In such instances, Stout may recommend that this woman travel to St. Louis, where she can get the care she needs. But if her income is low and she lacks access to transportation, there’s a good chance she won’t get there.

In 2013, the Missouri Foundation for Health established its Infant Mortality Reduction Initiative to address the disproportionately high rates of infant mortality not only in St. Louis but also in Missouri’s Bootheel region: six rural counties in the southeast part of the state. A hospital closure in the summer of 2018 left the region without an obstetric gynecologist.

Notably, the Bootheel’s racial/ethnic breakdown sets it apart from other rural parts of the state: It has a substantially larger population of African Americans. According to a 2016-2017 report from the Missouri Department of Health and Senior Services’ Office of Primary Care and Rural Health, non-Hispanic Blacks make up 17% of the population in urban areas statewide but just 4% of the rural population. In the Bootheel counties of Pemiscot, Mississippi and New Madrid, though, non-Hispanic Blacks account for 28.1, 25.5 and 17.0% of the population, respectively.

Unsurprisingly, preterm birth rates in those counties reflect the same racial disparities seen elsewhere, with rates of 9 to 10% among white infants and 16 to 19% among Black infants.

So, how is it possible to get rural women the care they need? Broadly, health care providers have two main options: Go to them or find a way to get them to you.

Obstetric-gynecology specialists from the Women & Infants Center do the former by seeing patients at three outreach clinics in Southern Illinois. In addition, the center is a regional referral center for women with high-risk pregnancies, and it offers transport services for pregnant women and newborns who need specialized care. This involves specially trained teams of medical providers that make more than 2,000 trips per year—by ambulance, helicopter or fixed-wing aircraft—to bring patients to the center.

“Our outreach clinics and our transport service allow us to get to the women who need us and get moms and babies where they need to be, either for prenatal care and delivery or postnatal care,” Stout says.

Ultimately, though, making a substantial reduction in the infant mortality rate—n rural and urban areas—will require ensuring that women have access to comprehensive medical care throughout their lives, not just when they are pregnant. To be effective, this kind of access would include contraception and pregnancy-planning. As it stands now, many women with low income, including those with serious chronic conditions, have large gaps in their medical care. They see a provider while they are pregnant, when they are covered by Medicaid, but they may go years without care before and after pregnancy. That means they can be unhealthy when they become pregnant, increasing the risk of poor outcomes for the baby. Increasing access to health insurance would help—if Missouri were to expand its Medicaid program as many other states did after the Affordable Care Act was enacted, for example — but that is only one piece of the puzzle.

Stout emphasizes the importance of providers outside the field of obstetrics and gynecology prioritizing women’s reproductive health and talking about it with their patients. “The medical care community has a responsibility to consider where a woman is in her reproductive life,” Stout says. “What are her goals? Does she want to be pregnant? Now or in a few years? How can we optimize her medication planning so that when she is ready to become pregnant, she is prepared and any diseases or conditions she may have are under control? We should be constantly having these conversations.”

“It takes a village”

Everyone working to reduce infant mortality and eliminate racial disparities agrees: It will require a multifaceted approach with many partners taking active roles. Helping women stay healthy in the first place, for example, requires more than increasing access to health care. It involves ensuring they are paid a living wage; making neighborhoods and housing safer; and providing access to healthy foods — all issues that Flourish St. Louis is addressing.

Those working in the field of health care have different roles to play. “On the hospital side, we may not be able to control women’s social determinants of health, but we can do our part by addressing preventable harm and mortality,” Smith says. She describes the Women & Infant Center’s emphasis on ensuring that women with gestational hypertension or preeclampsia which increase infants’ risks of poor outcomes, receive appropriate treatment.

In addition, the hospital’s perinatal behavioral health program helps women with postpartum depression or other mood and anxiety disorders, whose babies are at increased risk of infant mortality. And a prenatal outreach nurse provides childbirth education classes throughout St. Louis, in part to help women recognize warning signs so they know when to seek help.

St. Louis Children’s Hospital, through its Raising St. Louis program, works with families in ZIP codes with the highest infant mortality rates. At no cost to those families, specially trained nurses visit them in their homes during pregnancy and infancy, and they receive social and emotional support through group classes.

And Carter, Stout and their colleagues are continuing their research to uncover the most effective ways to reduce preterm birth and, ultimately, infant mortality. Some of this research takes place through the March of Dimes Prematurity Research Center housed at Washington University School of Medicine, where investigators search for medical solutions to predict and prevent preterm birth.

There is much to learn and much work to be done, but there is also reason for hope. “I am very optimistic because conversations about infant mortality are happening that have never happened before,” Smith says. “The amount of candor around disparities and what informs them makes me very hopeful. There are many partners working together, and that’s how we’ll make an impact. It takes a village.”