Infant Mortality and Race

Examining Health Disparities in Charlottesville Past and Present

Words by Lucy Hoak and Spencer Philps. Photo illustrations by Max Patten.

In 2016, a group of researchers at U.Va. published an article in the scientific journal PNAS that explored the implicit racial bias of 222 white medical students and residents at the University.

Twenty-one percent of first-year medical students believed that black patients had stronger immune systems than white patients, and 14 percent of second-year students were of the opinion that black people’s nerve endings were less sensitive than that of whites’. Almost half of first-years and second-years, and one-quarter of resident medical students believed that the skin of a black person is thicker than that of a white person’s.

In that same year, 2016, a black baby born in the city of Charlottesville was nearly 10 times as likely to die in their first year of life than a white baby.

In 2016, Charlottesville’s infant mortality rate for African Americans, or the number of infant deaths before one year of age per every 1,000 live births, was 26.3. This rate was among the highest in the Commonwealth, while the same statistic for white children was just 2.6. This disparity is not at all unique to Charlottesville — nationally, black women have the highest rates of infant mortality out of any racial background.

The context of the systemic social and economic barriers that women of color are subjected to in the United States can explain this racial disparity in pregnancy outcomes, according to a study conducted by Duke University’s Center on Social Equity. Black women experience the effects of both a gender and racial wage gap and are disproportionately exposed to factors that are correlated with poor pregnancy outcomes, such as high levels of poverty and decreased access to healthcare, food and housing.

The city of Charlottesville is no stranger to such racial discrimination and inequities. The City-ordered razing of a prosperous black neighborhood at Vinegar Hill in the 1960s pushed hundreds of African-Americans into public housing. Last year, a New York Times and ProPublica investigation uncovered the rampant racial segregation that exists today in the City’s schools. A recent report presented by the Charlottesville police found that black residents were nearly nine times more likely than whites to be subjected to stop-and-frisk encounters.

However, such an institutional explanation cannot fully explain this phenomenon, for when factors such as levels of education and income are held constant between African Americans and whites, the infant mortality rate gap still exists. What else, then, explains the racial gap in infant mortality rates in this city? Mayor Nikuyah Walker, in an interview published last fall, referred to the city as aesthetically charming, but still a “very ugly-in-the-soul place.” And indeed, the infant mortality crisis in Charlottesville cannot be explained without examining the city’s “ugly soul,” which begins at the University Hospital.

Dr. Michael Swanberg is a nursing researcher and professor at the University who wrote his dissertation, entitled “A Canary in the Coal Mine: Exploring African-American Women’s Lived Experience of Childbirth,” on Charlottesville’s racial disparities in infant mortality.  

Tall and affable, he led us through the labyrinth of hallways in the University Hospital down to the Claude Moore Health Sciences Library, where he wanted to show us primary sources that illustrated the hospital’s gruesome racist past. In the University’s infancy in the early 19th century, a wealth of evidence describes the routine practice of procuring cadavers for the medical school from African American cemeteries in the region, which would often have to be prepared for dissection by the University’s slaves.

“The graves of African Americans were robbed for that,” Swanberg said, “and the owners of enslaved people could sell their bodies — so even in death, the African American people didn’t have ownership of their own bodies.”

Even up until the 1950s and 60s, the hospital remained racially segregated. Black patients stayed in inferior and inadequate rooms with pipes that often leaked from overhead, and an emergency surfeit of patients meant hospital beds and patients would spill over into the hallway.

The legacy of discrimination and segregation prevails among older generations when they remember the old hospital — a legacy inherited by those visiting the hospital today.

Photo from University of Virginia Medical Alumni Newspaper showing pipes dripping onto patients.

“I was born in 1953, so anyone of my age remembers visiting their mother, father, grandmother; this is what it would it would look like,” Swanberg said. “One of the salient characteristics that people talk about — these water pipes, the heating pipes would drip on the patients. Every person that I talked to who’s over the age of 70 — that’s the one memory they take away from this is being in the basement, visiting their family members and having water drip on the patients from the water pipes in the basement.”

This traumatic legacy coupled with the implicit biases revealed in the 2016 PNAS study explains the disconnect that black patients feel in their experiences at the University Hospital, otherwise considered among the best hospitals in the Commonwealth.

The 42 African American women who participated in the focus groups which were the basis for “A Canary in the Coal Mine” often articulated a discomfort with being used as material for medical study, an experience not far removed from the days when African Americans’ graves were robbed for use in lab dissection. African Americans interviewed in the study preferred established doctors over inquisitive medical students.

“Like some people that do have bedside manner — they’re like 40 [years-old],” a participant said in “A Canary in the Coal Mine.” “They’re like way older because they’ve been doing it. And now they just like looking at you like ‘This is my science experiment, let me see what experience I can get out of it.’”

Participants also felt that given space constraints in the birthing room, priority was given to medical students over family members.

“And they have like a crew of students — the room is so crowded and the actual RN is sitting on the sink … It’s entirely too crowded,” a participant said. “I felt that they [the medical students] needed to leave … Like, if they have that many students in there, they can have that many family in there.”

The practices inherent to the pedagogy of medical school created a sense of mistrust by mothers. Swanberg described how the established protocol of having students establish safety by checking the patient’s identity — name, date of birth and number of children — can be at odds with the close relationship the patient hopes to have with their doctor. This practice in turn reinforces the stories from the past, while the medical student only thinks they are creating a safer environment.

“Like when I come in, you should know me by my first name. No matter that you have 3,000 women that you’re seeing. You should know me by my first name,” the participant said. “When you look at my chart, you should have a general idea of what’s going on with me and my pregnancy … I mean you don’t have to know my favorite color, but you should know that this is my first child, you shouldn’t ask me that when you come in the room.”

Swanberg relates these sentiments not only to the disturbing narratives of racism passed down from centuries ago, but also to even more recent narratives such as the destruction of Vinegar Hill.

“The local midwives, once the neighborhood was torn down, that whole social safety net was kind of moved to the hospital,” Swanberg said. “People really thought that medical students were giving the care, that again we kept hearing that narrative that we were being used as science experiments .… I don’t think we’re creating better stories, when we’re talking about health disparities. And if this was your memory, often what the women encountered at the hospital was just re-traumatized.”

Patients’ beds spill into the hallways in photo from 1953 University of Virginia Medical Alumni newsletter.

Despite such deep-rooted oppression, efforts are being made to reduce disparities in infant mortality rates and health disparities generally. Swanberg is hopeful about the projects and endeavors in the future, particularly given the increased public consciousness of past realities.

“The good part of this story a lot of people are working together and we’re trying, but we’re still not anywhere near where we need to be,” Swanberg said. “I think now we’re moving in the right direction, where for a while there we were moving in the wrong direction … a lot of people are working together.”

Yet, Virginians now know that their governor, Ralph Northam, a pediatric neurologist himself, wore blackface in medical school, and still holds office.

The issue of racial disparities in infant mortality caught the attention of local public health departments in 2008 following a district-wide community health assessment which was led by representatives from the University, Charlottesville and Albemarle Schools and Thomas Jefferson Health District. Since then, according to Kathryn Goodman, the public information officer for the Thomas Jefferson Health District which includes five healthcare facilities, a host of measures have been introduced to try to improve rates.

“From that [the results of the 2008 community health assessment], we deemed that we kind of needed to create a coalition that could collaborate and make bigger systems, changes and work together to address the issue, and kind of figure out the root cause of the issue and then work together to create programs and solutions and policies that could improve the birth outcomes,” Goodman said.

This led to the creation of the Improving Pregnancy Outcomes workgroup, a coalition of local stakeholders which strives to achieve goals such as increasing access to timely and adequate prenatal care and intervening on behalf of populations most in need.

Today, Goodman oversees the district’s IPO workgroup, which is in its 10th year and described the types of issues they address.

“There are handful of indicators for birth outcomes, and so we worked on different projects to address everything from reducing the rates of preterm births, low birthweight, infant mortality, of course, and other factors that play into pregnancies,” Goodman said. “So looking at increasing access to early entrance to prenatal care … and looking at enrollment in Plan First, which is a medicaid program that covers family planning services.”

The IPO workgroup puts out a resource guide compiling useful information and services for pregnant mothers in the area. On the guide, one can find resources like free support groups, low-cost or discounted transportation services or maternal education and support programs.

Goodman was optimistic about the progress the group had made and the plans for initiatives in the future, including looking at postpartum support services including maternal mental health.

Dr. Rachel Zaslow, a trained midwife and doula with a doctorate degree in feminist theory, is among those seeking to remedy the infant mortality crisis in Charlottesville. Upon moving to Charlottesville, its deeply ingrained segregation and corresponding health disparities made an impression on her.

“I was immediately struck by how segregated Charlottesville is,” Zaslow said. “There’s people living very different experiences of Charlottesville … you see it evidenced in restaurants and public spaces — and to me that almost always translates to higher parent/infant mortality and health outcomes.”

Zaslow found Charlottesville’s birth outcome disparities to be on par with the nationwide disparities, even when controlling for education and income.

“When you look at a black woman who’s Harvard-educated and eats only at Whole Foods, and her outcomes are just as bad, then we have to say, there’s something else going on. And the answer to that is almost always implicit bias in the case of medical care,” Zaslow said.

In a Cesarean section, Zaslow explained, some degree of pain is perceived as normal. Yet implicit bias means doctors are more likely to dismiss a black patient’s pain level as “normal” and forego additional testing, according to the 216 PNAS study.

“If a black woman has a C-section and says I’m in pain, the doctor is less likely to take her pain seriously than a white woman,” Zaslow said. “And a white woman — they may say, I believe you, let’s just run these labs, and, ‘Oh, we find out they’re internally bleeding, and we’re going to have operate again.’”

These disparities prompted Zaslow to start the Sister’s Keeper Collective in Charlottesville to educate women in the community as birth sisters, who then serve as advocates for their peers. In the four years since its founding, Sister’s Keeper has trained 65 women as birth sisters.

“Birth sisters work alongside a pregnant person helping them navigate the system, helping them ask questions to get the medical care they want or need, helping them create a birth plan to understand all the options, understand what options they might want, and understand that you can ask for these things,” Zaslow said.

This advocacy for women of color is key, given the implicit biases that may put women of color at risk, if communication is not two-sided and based on trust. In particular, the birth sister will work with the doctor and patient to ensure that the risks and benefits of any possible procedure are out in the open and clearly articulated.

“What we have heard doctors say is, ‘Well, the risk is that you don’t have your baby and the benefit is that you do,’” Zaslow said. “So the doula in that moment would say you can just explain to us a little more what would happen … and are there side effects.”

Ultimately, Sister’s Keeper strives to ensure that health care providers work as a team and allow the mother to make a real choice. The mother’s interests and desires are paramount — no bias is shown against choosing a natural birth, for example. After the birth, the birth sister continues to provide postpartum support.

“We do a 24-hour visit, a one week visit, and then as often as the mom needs postpartum to help her settled into a newborn care routine, to help her with breastfeeding,” Zaslow said. “We do screening for postpartum depression, and we make sure moms are linked into services that will help them to thrive with their new babies.”

Moreover, Sister’s Keeper provides services that aim to bridge the gap between services normally available to white women and women of color. Their new location on the Downtown Mall hosts childbirth education classes, prenatal yoga, babywearing classes, individual meetings with midwives, prenatal counseling and more, all centered on serving women of color.

“One of the things we heard from especially black moms, but women of color in general in Charlottesville, is a sense of disenfranchisement from most of the new mom spaces, so if you go to Bend Yoga on the downtown mall, which is a mommy/baby/prenatal center, it’s all white people in there,” Zaslow said. “Because of the history of segregation in Charlottesville, a black person may not feel comfortable walking into that space, so creating a space here that is a safe space has been an important thing.”

Incidentally, the yoga classes always sell out.

In providing these prenatal services, Sister’s Keeper aims to increase the percentage of African American mothers in Charlottesville who receive prenatal care in the first trimester of their pregnancy — now only 30 percent according to Zaslow.

“The greater piece are these pregnancy crisis centers of Virginia, which are pro-life centers masquerading as health centers,” Zaslow said. “So they’re not real health centers, they don’t have doctors or nurses on staff, they have church volunteers but they offer ultrasounds, free pregnancy testing, and counseling … What we have found is they’re serving over 80 percent of the black population in the first trimester, and what is happening is people think they are getting prenatal care … even though it’s not actual prenatal care, it feels and looks like prenatal care.”

Pregnancy testing is a critical service, as social services such as Medicaid and food stamps require an official verification letter of pregnancy to receive additional benefits. Because such pregnancy centers have been authorized to verify pregnancy, women can come and take what Zaslow calls “a dollar store pregnancy test” to receive social services, decreasing incentive to seek prenatal care at an established health center with medical staff. In response, Sister’s Keeper hopes to provide legitimate prenatal care, attracting women with the same services offered by the pregnancy centers.

“These kinds of things we’re hoping to combat by opening up this center,” Zaslow said.” We’ll be offering free pregnancy testing and verification letters, we’ll be offering the opportunity for people to get prenatal care here with a midwife and then transfer to a doctor if they want to deliver at a hospital.”

Sister’s Keeper also trains women to be advocates for the health of themselves and their babies. Zaslow views this lesson of self-advocacy as instrumental to helping the mother be an advocate throughout her life, thus having the ricochet effect of healing disparities far beyond birth.

“If a mom can be supported to have one, a positive birth experience, but two, the skills that she learns to advocate for herself, to ask questions, will carry forward in this ripple-effect way, through medical care for her children growing, to the school system, learning to ask and advocate for more,” Zaslow said. “You have a right to have more and ask more — this is the toolbox for how you do it.”

Such a ripple effect is crucial because Zaslow says issues of injustice must be attacked at their core, as they are intertwined.

“In the words of Staceyann Chin, all oppression is connected,” Zaslow said. “You can’t separate one from another. They’re all crises in Charlottesville, and they all come down to segregation, a history of explicit and implicit racism and systemic oppression of people of color, both at U.Va. and people in the city.”

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