Reading Time: 10 minutes

This story is part of the Cap Times series Deadly Divide, investigating Wisconsin’s ongoing Black infant mortality crisis. The reporting is supported through a National Fellowship from the USC Annenberg Center for Health Journalism.

Click here to read highlights from the story

• Wisconsin’s Black infant mortality rate remains more than twice the rate for white infants. Nearly 850 Black babies died before their first birthdays from 2015 through 2024.
• Five women in the Wisconsin Legislative Black Caucus call the crisis deeply personal, citing their own experiences with premature births, frightening pregnancies and unequal treatment in health care. 
• Black Caucus lawmakers last session introduced a seven-bill Birth Equity Act addressing doula care, maternal mental health, dental care, postpartum support and other needs — but none of the bills received a committee hearing before the Republican-controlled Legislature adjourned.
• Republicans who control the Legislature have declined to advance similar legislation for years. 
• Black Caucus lawmakers say reducing Black infant deaths requires policy changes and greater trust in the medical system, including culturally competent care.

For decades, Wisconsin’s Black infant mortality crisis has been measured in painful numbers: babies who die before their first birthdays, families left grieving and an enormous racial disparity that never relents. 

Wisconsin regularly ranks among the worst in the nation when it comes to the rate at which Black babies die before reaching age 1. In 2024, the most recent year for which the Wisconsin Department of Health Services has publicized data, the state had an infant mortality rate of 12.5 deaths for every 1,000 live births among Black babies. For white babies, that rate was 4.8. 

Between 2015 and 2024, nearly 850 Black babies died in Wisconsin before turning 1, according to state data. Over the first half of that decade, nearly 25% of the deaths of Black infants were caused by being born into this world too early and too small to survive.

But for the five women in the Wisconsin Legislative Black Caucus who have pushed awareness of the issue year after year, the crisis is not abstract or statistical. It is personal. 

Wisconsin’s notorious peril for Black pregnancies is a fear and a pain they have known in their own bodies, and one they have returned to the Capitol session after session determined to change. 

One legislator delivered her daughter nearly eight weeks early. Another, state Rep. Margaret Arney of Wauwatosa, was born prematurely alongside her twin. State Rep. Sequanna Taylor of Milwaukee was told she was unlikely to carry her pregnancy to term, but not why. And this year, one of the lawmakers carried that same fear throughout her first pregnancy.

“Being a senator that knows all the data I think has made it more nerve-wracking,” said Sen. Dora Drake, D-Milwaukee, while holding her pregnant belly during a listening session with the Cap Times in July. Drake delivered her baby without complications in early September. 

Wisconsin continues to face one of the nation’s highest rates of Black infant mortality in the nation, a crisis these five women say cannot be separated from the lived experiences of the families and babies behind the numbers. 

But session after session, they say they have run into resistance from Republican leaders who have declined to give any one of their proposals even a committee hearing. 

“We encountered nothing but struggles in this building,” said Sen. LaTonya Johnson, D-Milwaukee. 

Last spring, Rep. Shelia Stubbs, D-Madison, worked with members of the Foundation for Black Women’s Wellness in Madison to develop the latest version of the Birth Equity Act — a package of seven bills aimed at improving birth outcomes and connecting expecting and new mothers with resources that increase their chances of carrying healthy pregnancies to term and managing the postpartum period with greater support. 

The proposals were based on what the foundation has heard from community members about what would help Black mothers, babies and families the most. 

“These bills came directly from Black women,” Stubbs said. 

• Assembly Bill 1082 would have created a sales tax exemption for breastfeeding equipment.
• Assembly Bill 1083 would have barred the state from seeking recovery or reimbursement of birth expenses from a new mom covered by the state’s Medicaid program.
• Assembly Bill 1084 would have ensured the Medicaid program covers services by a dentist or dental therapist and stipulated that pregnant patients should be able to receive timely dental care during pregnancy.
• Assembly Bill 1085 would have required Medicaid plans to cover care provided by a doula before, during and after delivery.
• Assembly Bill 1086 would have required Medicaid to cover maternal mental health screenings and required the state’s health department to develop — in consultation with advocates and providers within the Black community — a set of standards to ensure cultural competency in maternal mental health screening practices.
• Assembly Bill 1087 would have allowed for a pregnant person to enroll in a health insurance plan outside of a standard enrollment period after becoming pregnant to ensure prenatal care is covered by a health plan.
• Assembly Bill 1088 would have required hospitals to provide a postpartum home visit to a new mom and baby, if requested, within the first few weeks after giving birth. The bill also would have required health insurance plans to cover these visits. The visits could be conducted by a doula, midwife, nurse-midwife or other licensed health care provider who is certified to provide postpartum care.

But none of the bills introduced last February received a public hearing before the Republican-controlled Legislature adjourned its session early, Stubbs said. 

That included bills assigned to the committees she said were best suited to consider them, like the Assembly Committee of Health, Aging and Long-Term Care where she holds a seat. 

The proposals were aimed at shrinking disparities and improving maternal and infant health in Wisconsin through a variety of approaches ranging from insurance-covered doula care to ensuring pregnant women get adequate dental care. 

“Of all of the bills we introduced, absolutely none of them received a hearing, which is very shameful (and) unacceptable in the state of Wisconsin,” Stubbs said. “So even serving on a committee that’s most appropriate to have these bills, we still couldn’t get these bill hearings.”

Republican Rep. Clint Moses, who chairs the Assembly health committee and holds gatekeeping power over which bills receive hearings, did not respond to multiple requests for comment for this story. Committee chairs often decide which bills receive hearings in line with party leadership priorities. 

For Drake, the lack of movement comes down to a simple conclusion. 

“It’s not a priority for them, honestly, and that’s really the bottom line,” she said. 

A crisis measured in lives

Wisconsin’s Black infant mortality crisis has persisted for generations. And the women pushing for change say the disparities cannot be explained by income or individual behavior. 

Arney, a Democrat from Wauwatosa, knows that personally. 

“This is a generational issue,” Arney said. “I am a twin. My twin sister and I were born prematurely. Our lives were at risk.” 

Her mother was college-educated, she said, but that did not erase the risks associated with being a Black mother in America. 

“It’s more than just social class,” Arney said. 

Johnson, the senator from Milwaukee, said she has encountered resistance to policies specifically designed to address racial disparities based on an argument that helping Black families reduce disproportionate harm is discrimination itself. 

“A lot of the feeling in this building is that if something is targeted specifically, then it’s somehow discriminatory,”  said Johnson, the lawmaker who delivered her daughter two months early. 

But, she said, the nature of the crisis demands a targeted response. 

“It’s not discriminatory that it’s kids who look like us that are dying, but it’s discriminatory because we want to fix it?” Johnson said. 

The lawmakers pointed to policies that have passed as examples of what can happen when the Legislature works together. 

Johnson cited Act 102, signed by Gov. Tony Evers earlier this year, which extended the period of time Medicaid covers postpartum services. About 76% of Black women who give birth in Wisconsin are on Medicaid, making this law particularly important to fight to save Black babies, she said. 

“That bill will disproportionately impact Black women, which in this case is a good thing,” Johnson said. “That will be one piece of legislation that will start to uncover the core of what’s really taking place.”

But the lawmakers say broader changes — including greater access to doulas and culturally competent care — are still needed. 

“Several of us were working on trying to have that coverage provided, because the research shows that having doulas and midwives helps mitigate some of those harmful factors,” Drake said. 

Having that kind of support was important to her personally, she said, because “that was something that I really wanted to ensure I had someone I could trust.”

When the statistics become your own 

Before Johnson’s daughter was born — a few days shy of 32 weeks — a midwife recognized that Johnson and her pregnancy could be in danger. 

“My midwife went to the doctor and said ‘Look, she’s high risk. She needs another level of care other than what I can provide,’ and I didn’t get it,” Johnson said. 

Johnson spent two weeks in the hospital before her daughter was born, receiving steroid shots to help develop her baby’s lungs, she said. 

Her daughter was born on June 3 and went home on June 22, Johnson’s birthday. 

Johnson quickly returned to work, without giving herself time to recover from giving birth because she felt driven to make sure she could pay the bills as a single mother. 

“So when (my daughter) got home, she had a place to come home to,” Johnson said. 

But she later learned something about her pregnancy that she said doctors had not told her at the time: She had contracted an infection that caused premature delivery. 

“There was things I didn’t realize about my own pregnancy until I got a copy of the medical records,” Johnson said. “My experience was so horrible. I remember saying I would never have another baby.”

Her daughter survived and is now in her 20s.

“The fact that my daughter made it to her first birthday was a luxury that a lot of these Black babies are not afforded,” Johnson said. 

Rep. Taylor’s experience was different, but it left her with many of the same questions and a similar, lingering pain. 

During her pregnancy with her youngest daughter, Taylor said, her doctor told her she was unlikely to carry her baby to term. He never explained why. 

“They were so cold,” she said. “I know as doctors they can’t be emotional because they deal with so many people. But to tell me ‘There’s nothing you can do to help. This baby won’t go to term. Go home. If you start bleeding or something, come back…’’’

The interaction left Taylor feeling unable to connect to her pregnancy because she was so convinced she would lose it. 

Taylor, who is from Milwaukee, did carry her daughter to term. But after delivery she was rushed to emergency surgery because she couldn’t successfully deliver her placenta, a complication that can lead to serious infection. 

Taylor now wonders whether her medical team failed to adequately screen her for complications because they already assumed her pregnancy would fail. 

The fear of not being heard 

For the lawmakers, the problem is not only access to care. It is whether Black women are believed, listened to and treated with dignity when they seek it.

“There’s this notion of who gets to have access to health care,” Drake said, adding that she has experienced that dynamic herself. 

Two years ago, she went to a hospital in Milwaukee with a broken arm. When she told the staff she had state insurance — the coverage  provided to her as a Wisconsin legislator — the hospital assumed she meant Medicaid. 

During Stubbs’ pregnancy, a nurse mistakenly gave her the test results of another Black patient. 

“It wasn’t stressful carrying my child,” Stubbs said. “It was stressful going to the doctor.”

Arney said she has seen the same pattern play out over generations. 

Years ago, she participated in a focus group of Black women discussing their experiences giving birth. Arney said she was fortunate. Her sister, who is a doctor, was there. She had a doula, a midwife, an obstetrician and her husband supporting her. 

Nearly every other woman in the group, Arney said, described a traumatic birth experience. 

“Different years. Different times. This is what I’m talking about with the generational thing,” Arney said. “It’s like these kinds of things are not moving. This is not budging. This needs attention. It needs focus and it needs urgency.” 

A crisis of trust 

The lawmakers say those experiences have contributed to a broader lack of trust between Black women and the medical system. 

“People can go through history on how hospitals and medical professions have used Black women’s bodies for experimentation,” Drake said. “This is not hidden. This is known. This is documented.” 

One of the more egregious examples of this is by 19th-century physician James Marion Sims, the so-called “father of gynecology” who developed techniques in the field by performing dozens of experimental surgeries without anesthesia on three enslaved women without their consent. The women — Anarcha, Lucy and Betsey — have been memorialized in the Mothers of Gynecology sculpture in Montgomery, Alabama. 

That pain haunts the medical profession and is a traumatic history providers must intentionally work to move beyond, reestablishing trust among Black women, the lawmakers said. 

This work, Arney said, must go beyond individual providers. 

“I know there’s some health systems that are trying to take this on, but I hate to say it’s baked into our culture that there’s this callousness towards Black women,” Arney said. 

That distrust can make pregnancy itself more frightening, regardless of the resources you have sought for yourself. The data and statistics surrounding Black birth outcomes in Wisconsin have remained in the back of Drake’s mind throughout her pregnancy. Despite the fact that she is a college-educated professional social worker and a member of the Wisconsin Senate. “Those are still the realities we have in our state,” she said. 

Inside the Capitol

The women of Wisconsin’s Legislative Black Caucus say the political resistance to their proposals is part of the same struggle. 

Stubbs said her white Democratic colleagues have been supportive, often signing on as co-sponsors to her legislative proposals and allowing the Black Caucus to lead on issues they view as particularly tied to the Black community. 

That support matters, she said, because the Black lawmakers bring lived experience that their white colleagues don’t have in the same way. 

“It’s helpful, because nobody knows our struggle the way that we do, and they’re not going to understand,” Stubbs said. 

But there is a limit to simply standing behind the Black Caucus, she said. It’s not enough to simply sign onto legislative proposals or attend press conferences during Black History Month or in June, when Juneteenth falls.

“Sometimes it’s harmful to just be like ‘You got it,’ you know?,” Stubbs said of the type of support she gets from other Democrats.

Stubbs said she has also had conversations with white lawmakers who choose not to believe the evidence showing racial disparities in health outcomes. 

“In that building, we have many of our colleagues that don’t believe in diversity, equity or inclusion,” Stubbs said. “We have a federal government that doesn’t believe in that. So we’re fighting already systems that don’t believe in us.”

Some lawmakers, she said, see the Black Caucus’ efforts as blowing an issue out of proportion. 

“They don’t want to believe the data,” Stubbs said. “They think it’s us coming one more time with another inequity, but it’s a fact, and so it is our responsibility as a state to address this.”

The five legislators say they have heard about the pain and trauma of this crisis from constituents. They have lived it themselves; in premature births, frightening pregnancies, traumatic deliveries and the persistent pain of being made to feel less than. 

That’s why the fight is much more than a political one, they said. 

The stakes are measured in whether a baby gets to come home. 

“We have these stories,” Stubbs said, “and we are telling them because we want to save the next life.”

Erin McGroarty is a health and policy reporter for the Cap Times in Madison. She can be reached at emcgroarty@captimes.com.

How a fight to save Wisconsin’s Black babies keeps hitting a dead end is a post from Wisconsin Watch, a non-profit investigative news site covering Wisconsin since 2009. Please consider making a contribution to support our journalism.

Reading Time: 11 minutes

Note: This is the first story in the Cap Times series Deadly Divide, investigating Wisconsin’s ongoing Black infant mortality crisis. This reporting is supported through a National Fellowship from the USC Annenberg Center for Health Journalism. 

Click here to read highlights from the story

• Wisconsin’s Black infant mortality rate was 12.5 deaths per 1,000 live births in 2024, compared with 4.8 for white babies; nearly 850 Black babies died before age 1 from 2015 through 2024.
• Preterm birth and low birth weight are the leading causes of death among Black infants, and Black mothers in Wisconsin are 50% more likely to give birth early than white mothers.
• Experts say income, education and health care access alone do not explain the disparity, pointing instead to the lasting health effects of systemic racism, chronic stress, segregation and generational trauma.
• State health leaders say improving outcomes will require support before and beyond pregnancy — including more time and trust in health care settings, culturally informed care and efforts to address housing, child care and other stressors.

For generations, Black families in Wisconsin have buried babies at rates far higher than their white neighbors — a disparity that has withstood medical advances, public health initiatives and decades of promises to close the gap.

The numbers have remained stubbornly consistent, with Wisconsin regularly ranking the worst in the nation when it comes to the rate at which Black babies die before reaching age 1. In 2024, the most recent year for which the Wisconsin Department of Health Services has publicized data, the state had an infant mortality rate of 12.5 deaths for every 1,000 live births among Black babies. For white babies, that rate was 4.8. 

Between 2015 and 2024 nearly 850 Black babies died in Wisconsin before turning 1, according to state data. Over the first half of that decade, nearly 25% of the deaths of Black infants were caused by being born into this world too early and too small to survive. 

Researchers and health experts say the crisis cannot be explained by lack of access to quality health care alone. They point to the cumulative effects of systemic racism, chronic stress and generational trauma that shape maternal health long before pregnancy begins and influence birth outcomes from one generation to the next. 

That these disparities transcend socioeconomic factors like income or level of educational attainment show the root cause lies elsewhere. Black babies are dying at higher rates even when their parents make a decent living. Black babies are dying at higher rates even when their moms are well-educated.

For Dr. Jasmine Zapata, Wisconsin’s state epidemiologist for maternal and child health and chronic diseases, the numbers have never just been numbers. 

Every chart tracking premature births, every report on infant death and every statewide trend carries the memory of her own pregnancy, when she unexpectedly delivered her daughter at just 25 weeks. 

As a second-year medical student at the time, she knew something wasn’t right when she felt sharp pain in her lower abdomen. Her due date was not until Jan. 2. It was Sept. 20. 

Zapata’s pain was repeatedly dismissed by doctors as Braxton Hicks contractions — a type of contraction that typically takes place earlier in a pregnancy and doesn’t result in cervical dilation or labor.

“I called about two, three times and I was just brushed off,” Zapata said.

But when Zapata began bleeding, she rushed to the hospital where providers found her cervix was already 10 centimeters dilated, the threshold typically required to give birth. 

“They told me ‘You’re going to meet your daughter today,’” Zapata said.

Though she was nearly 15 weeks out from her due date and her baby was barely beyond the point of viability, Zapata gave birth to her little girl. 

“When my baby came out, she was not crying. It was quiet, because her little lungs were too fragile to even breathe,” Zapata said. “I knew that complications of prematurity, this little baby fighting for her life … I was right there at the verge of being one of the infant mortality statistics.”

Zapata’s experience with preterm birth, even though her pregnancy was not categorized as high-risk, is common in Wisconsin, where Black mothers are 50% more likely to give birth before their due dates than white women. 

Preterm birth and low birth weight are the leading causes of death among Black infants, defined as younger than age 1. 

National experts on health and development say there’s a painful and deep-rooted reason these statistics persist despite medical advancements. 

‘This is the world you’ll be born into’ 

Dr. Tony Iton, a nationally recognized public health leader and advocate for health equity, has spent much of his career studying how chronic stress related to discrimination puts people’s health at risk. Iton is the CEO of The Health Trust in California.

Decades of research, he said, shows that living in a society built on a legacy of structural racism can result in consistently elevated levels of cortisol, the body’s stress hormone. Those levels increase the risk of pregnancy complications like preeclampsia (pregnancy-related high blood pressure) and early labor. 

“We don’t have a preterm crisis, we have a chronic stress crisis,” he said in an interview with the Cap Times. 

Those effects don’t disappear when a pregnancy ends. They accumulate over a lifespan and, in many cases, across generations. 

Research has shown that prolonged exposure to adversity can influence fetal development through changes in the mother’s body and health, said Nicole Bush, a clinical psychologist and director of the Division of Developmental Medicine at the University of California San Francisco. 

The science, she said, increasingly shows that a mother’s environment and experiences across her lifespan can affect a child’s health before birth, with consequences that can then extend into that child’s adulthood.

Those intergenerational effects can happen through epigenetic changes. Different from genetic mutations, epigenetic changes don’t alter core DNA sequences but instead perform like chemical switches that can turn specific genes on or off, Bush said. That switch affects how genes activate processes in someone’s body.  

“Our epigenetic marks can be influenced by nutrition. They can be influenced by sleep. They can be influenced by social experience,” Bush said. “Epigenetic changes related to experience can be stable for a long time after they’ve been changed, and so major stressors can have a long-standing impact on our bodies. They can affect our perceptions, our brain chemistry, our physiology.”

As a result, trauma and stress that someone experiences as a child can alter how their body responds later in life and, during pregnancy, influence how a fetus develops and preemptively trains an infant in utero to expect more stress in life. 

“In addition to placing the mother and her uterus and her pregnancy functions at immediate risk for challenges such as preterm birth or postpartum depression, it can also send certain chemicals and signals to the baby in utero that then program that baby to come out ready for a strong fight or flight and reactive immune system,” Bush said, “because the mom’s biology is trying to communicate to the baby ‘This is the world you’ll be born into, come out as prepared as you can.’”

Where Wisconsin stands

Nationally, the Black infant mortality rate is 11 per 1,000 live births, according to 2024 data from the National Center for Health Statistics, an agency that is part of the U.S. Centers for Disease Control and Prevention. 

The national infant mortality rate for white babies that same year was 4.4 deaths per 1,000 births. 

Also that same year, Wisconsin health data showed Black women were five times more likely than white women to die from pregnancy-related complications.

According to a 2025 study published in the Annals of Internal Medicine, Americans are living longer than ever and the difference in mortality between Black and white Americans has shrunk over the last half century, except when it comes to infants, where the disparity in mortality between Black and white babies has grown. 

That Wisconsin ranks so poorly for Black infant and maternal mortality is not new. In 2009, Black babies were almost four times more likely to die within their first year of life than white babies. 

The year before that, Dr. Richard Allan Aronson submitted a white paper to the University of Wisconsin School of Medicine and Public Health highlighting racial disparities in the state’s birth outcomes. Aronson served as medical consultant and chief medical officer for family and community health at the Wisconsin Division of Public Health from 1988 to 2002.

The Wisconsin Department of Health Services publicizes infant mortality statistics going back to 1985. In the four decades since, the mortality rate among white babies has consistently decreased in line with medical advancement. The rate among Black babies has remained largely stagnant, with the state having a higher rate of mortality among Black infants in 2023 than it did in 1991.

In his 2008 paper, Aronson identified segregation and disparate access to services as key factors in the racial gap in birth outcomes. 

“Since infant mortality is a sentinel indicator of a community’s overall well being, the factors that contribute to racial and ethnic birth outcome disparities relate to all sectors of society. The neighborhoods in Wisconsin with the highest rates of black infant mortality are characterized by hypersegregation, unemployment, economic hardship, and inadequate housing,” Aronson wrote. “Systems that serve children and families in these communities are often fragmented, burdensome, culturally and linguistically disrespectful, and deficit-based.”

Aronson’s assessment of the situation in Wisconsin is as true today as it was nearly two decades ago. And from the year he issued his report to 2024, nearly 1,500 Black babies in Wisconsin died before their first birthday, according to data from the Wisconsin health department. 

Had the rate been the same as it was for white babies, more than 970 of them would have survived.

Gaps in access to care and a lack of culturally competent medical services still play a key role in how Black Wisconsinites interact with the health care system, particularly during and after pregnancy, Zapata said. 

Wisconsin’s largest cities still carry the spectre of racial segregation and redlining, policies that separated whole populations from necessary services.

Milwaukee, Wisconsin’s largest city with the highest population of Black residents and the highest total annual number of Black infant deaths, has also been consistently ranked as one of the most segregated cities in America. 

Madison, which has a far lower population of Black residents, also faces notable racial and subsequently connected socioeconomic segregation. 

“If you were going to design a strategy to adversely impact the well-being of a population, you couldn’t come up with a better policy than racial residential segregation. It’s actually brilliantly evil in its manifestations,” Iton, with The Health Trust in California, said.

‘It shouts racism’

Poor health outcomes are often explained away by poverty or low educational achievement, Iton said. But disparities in maternal and infant health outcomes for Black women and babies are shown to transcend both of these factors. This shows that something else is at work, he said.

National data shows Black mothers with a college degree still have higher infant mortality rates than white women who drop out of high school. 

“It shouts racism,” Iton said. “If you’re not protected by income and social status from this outcome, that suggests that it’s not just material poverty or lack of resources, but it’s also your situatedness in society and what you perceive to be essentially a pervasive, large-scale devaluation of you as a human being.”

Those effects become clearer looking at data that show Black immigrants have better health outcomes when they come to the United States but exhibit poorer health outcomes the longer they are here, Iton said.

“The birth outcomes are so much better in the African immigrant women, and then as they acculturate, spend more time in America, their birth outcomes get worse,” he explained. “So the suggestion is that it’s really something in the environment in the United States.”

‘Preventing the fire in the first place’

Zapata, Wisconsin’s state specialist in child and maternal health, said she wants more focus on preventing the problems that hurt people in the first place. 

“There’s always so much focus on just when you get pregnant and right after. It’s kind of like a house is on fire and it’s burning, and then you’re always just focusing on how can the fire truck get there faster,” she said. “Let’s focus on preventing the fire in the first place.”

That means addressing stressors faced by Black Wisconsinites across their lifespan. 

“It’s like once you’re pregnant, you can qualify for all these services. But sadly, from a physiological and biological standpoint, a lot of times it’s too late,” Zapata said. “Because that birthing person — what happened to them all the way into their childhood, and even what was going on with their parents, and when they were in utero, the environment, the stress that their parents were having — that impacts them, that impacts their birth outcomes.”

Zapata said reducing Wisconsin’s Black infant mortality rate will require more than improving medical care. It will require confronting the centuries of systemic racism and inequity that have shaped Black women’s experiences with health care, government and other institutions — and rebuilding trust that has been eroded over generations.

“We’re not going to be able to undo some of the things that got us here in just five years,” she said.

She pointed to a history of exclusion and abuse that is not as distant as it can seem. Less than a century ago, Black people were barred from medical schools, she said, while unethical government and medical practices against people of color have contributed to generations of distrust.

“All of that accumulated harm plays a role into what we’re seeing today,” Zapata said.

That history is reflected in the health care system Black women encounter today, she said. Even when women have access to a doctor or hospital, that doesn’t necessarily mean they feel heard, respected or safe enough to fully engage with the system.

“We’re working within a system that’s just not designed to provide equitable care to all people in all backgrounds,” Zapata said. “We want to look around and see that it reflects the diversity of our community, or just come in and see someone that looks like me.”

Building that trust, she said, requires something the current health care system often does not give providers or patients: time.

Providers can be expected to see dozens of patients a day, while appointments designed to take an hour are squeezed into 15-minute slots. Long waitlists can make it difficult for patients to establish relationships with providers in the first place.

For Black women who already approach the health care system with distrust, those constraints can be especially consequential, Zapata said. A rushed appointment can leave a patient feeling dismissed even when the provider is not intentionally doing so.

“Patients who feel brushed off will be less likely to engage with that system again,” she said.

If something goes wrong during a pregnancy, that can mean a mother is less likely to call her doctor or seek help.

“There’s a lot of Black women that are scared to have children in our state, just because of the statistics,” Zapata said. “When we come into a provider, because of that unique background, we need more time.”

That need extends beyond the exam room. Zapata recalled treating a mother who, just 24 hours after giving birth, was pleading to leave the hospital because she had no child care. Another mother was discharged with her newborn to a homeless shelter.

“They don’t even have a place for the baby to sleep,” she said. “It is just heartbreaking.”

Those circumstances can make it difficult for a mother to focus on her own health or her baby’s health, even when medical care is available.

“Do you think they’re listening to us with their whole heart, with their full attention?” Zapata said of patients in these circumstances. “No, because their brain is thinking about how they’re going to survive.”

Doulas are one option to help bridge some of that divide, she said. Because they can provide advocacy, emotional support and culturally informed guidance, doulas can help women feel safer navigating a health care system that might not feel built for them.

For Black women, she said, that kind of support is not an extra. It is part of what they are asking for as the state tries to change outcomes that have persisted for generations.

‘Too many funerals’

Zapata’s daughter, Aameira, was in the neonatal intensive care unit for three months after she was born. She is now almost 16 years old. Her mother describes her talent for photography, her sassy personality, her beautiful singing voice — each moment of praise an appreciation for the fact that her daughter survived what many babies born that early do not.

It was the moments, days, weeks and months that followed Aameira’s birth that Zapata says shaped the trajectory of her life’s work. 

“When I walked out of the NICU with her in my arms, I made a commitment that I’m going to dedicate my career to finding ways to make sure every baby gets to walk out,” Zapata said.

That has remained a driving factor in her work as a doctor, as a state health official, as a mother and as a resident of a state where too many babies don’t make it to age 1.

“I’ve been to too many funerals of babies who didn’t make it to their first birthday. Words can’t express that. I’ve had to do CPR on a baby that came into the hospital already basically gone,” Zapata said. “When you have those types of memories, and screams of family members, and faces drilled in your mind, in your soul, it just really impacts the work that you do.”

Erin McGroarty is a health and policy reporter for the Cap Times in Madison. She can be reached at emcgroarty@captimes.com.

‘Too many funerals’: Wisconsin’s Black infant mortality crisis is harming generations is a post from Wisconsin Watch, a non-profit investigative news site covering Wisconsin since 2009. Please consider making a contribution to support our journalism.