Reporting and research must go hand in hand to make progress on Black infant mortality

Both the pandemic and the racial disparities it laid bare have shined a harsh spotlight on the life and death consequences of systemic racism’s impact on health. Nowhere is this more apparent than in one major indicator of a nation’s wellbeing: infant mortality. In the United States, Black infants are about twice as likely to die before their first birthday than white infants. 

That appalling statistic is part of what motivates the work of Priska Neely, managing editor of Gulf States Newsroom, and Cheryl Giscombe,  distinguished associate professor of quality of life, health promotion and wellness at the University of North Carolina at Chapel Hill. The pair recently joined fellows at the 2021 National Fellowship via Zoom to discuss how their recent reporting and research, respectively, are shining new light on a decades-old disparity.

Neely’s award-winning 2018 California Fellowship project with KPCC explored the link between racism in the U.S. and the death of Black babies. She recalled being at a maternal mental health conference four years ago when she first heard the shocking statistics around Black infant mortality. Neely had a personal link to the issue: a sister who had lost two babies, both born very premature, and another sister whose baby was born two months early (and survived) after a perilous delivery.

When Neely discussed what she learned about Black infant mortality with her sisters, they had no idea that this issue was affecting so many women like them across the country.

“That was my kind of initial light bulb moment — realizing that people who may be part of this statistic don't know that they are and may be carrying this guilt about what they went through,” Neely told fellows. “They may not realize that it's so much bigger than just their experience.”

With that focus, Neely began reporting what would become a five-part series that sought to increase awareness of the drivers behind Black infant mortality among the communities directly affected by the disparity. It starts with a radio segment featuring Neely’s sister and her nephew, 11 years old at the time, who discussed how he had to use a breathing mask, air tank, and feeding tube during his first moments of life.

Neely’s editor at KPCC encouraged her to tweet about the project as she reported it, as well as the major statistics driving the investigation. The responses were immediate and largely positive, but some commentors complained about the series’ focus on race. This led Neely to write a piece alongside her radio segments explaining that racism, not race, was the focus of the series. She used the piece to tackle the assumptions that commonly arise around the issue, even when talking to the Black community.

Neely recalled that when speaking to Black student groups about the harrowing statistics on Black infant mortality, she heard many of the same assumptions: mothers weren’t taking care of their babies, or they were smoking during pregnancy, or they were having children too young.

Neely sought to challenge some of these assumptions through intimate interviews with Black mothers of varying socioeconomic levels who had experienced discrimination in health care settings while pregnant, delivered a premature child, or lost their child. She also spoke with maternal health experts to discuss important factors such as weathering, the wear and tear on the body resulting from chronic exposure to racism and other social and economic stressors.   

The series culminated in an in-person event that drew more than 200 people, with Black women comprising most of the audience. 

“It was one of the prouder moments that I've had as a journalist, just because we were able to do that targeted outreach and make sure that people who really could benefit the most from the information were getting it,” Neely said.

Giscombe provided some clinical context to accompany Neely’s reporting, sharing how her research has evolved from studying how Black women can improve outcomes for themselves to the structural issues in health care settings that need to change.

“We were trying to understand health disparities without understanding context,” Giscombe told fellows. “We were using very generic measures or variables to try to understand disparities, without taking people's social and historical factors into play.”

This led her to develop the Superwoman Schema, a questionnaire that uses five characteristics to better assess how Black women experience stress, and how their typical roles in the family and society may influence their ability to cope with stress. 

Giscombe also explained how stress can influence cardiovascular and neuroendocrine inflammatory pathways. These are the same pathways that contribute to disparities in heart disease, diabetes, obesity and even autoimmune conditions such as lupus, which is far more prevalent among Black women.

“But if we develop interventions to reduce those stressors … it might reduce stress, but it may not be reducing the causes of the disparities,” she said.

Giscombe emphasized the need to better train medical professionals on how to be more aware of their own implicit bias and any assumptions they harbor, which might cause them to overlook or ignore warning signs in Black female patients. 

She also stressed the importance and urgency of both journalism and research on the issue. “If we publish with a journalist and a newspaper, or even write a book, it doesn't have the same wait time as there is for a scientist, whose research is published in a peer reviewed academic journal. Doing both would be a good solution.”