Midwife Jennie Joseph prepares her patients for childbirth like she’s “sending folks onto the battlefield.” The battlefield is the hospital. Joseph cares for a wide variety of patients, but she’s particularly attuned to black mothers. She knows they’re more likely to have negative experiences in the healthcare system: being ignored by nurses, reporting pain that goes untreated, watching doctors glance nervously at their partners and enduring other forms of subtle and not-so-subtle discrimination.
Joseph gives these women what she calls “sneaky things,” tips to ensure better care once they reach the hospital. She recommends specific doctors with lower C-section rates and friendly nurses she knows personally. She tells patients never to show up alone — they should always have someone to advocate on their behalf. And when contractions start, she advises them to “stay outside (the hospital) for as long as you can. Walk the grounds, stay in the parking lot until the last minute, because if you bust in the door ready to go, you’re going to get better care.”
“You have to learn how to navigate this mess if you want to survive,” said Joseph, who trained in the U.K. before founding Commonsense Childbirth and The Birth Place in Orange County, Florida. “And because you’re in dire jeopardy for not surviving, let me give you the straight skinny so you can be prepared and have some agency around this crap.”
Joseph isn’t being hyperbolic. Preparation, she emphasizes, can save a woman’s life.
In the U.S., women die during childbirth at a higher rate than in any other developed nation. Between 1990 and 2013, the U.S. maternal mortality rate more than doubled, jumping from an estimated 12 to 28 maternal deaths per 100,000 births, according to a report by the World Health Organization. About half of those deaths were preventable.
The outcomes are significantly bleaker for black mothers in the U.S., who die at three to four times the rate of white mothers. Forty black women died per 100,000 births between 2011 and 2014, compared to 12.4 deaths per 100,000 births for white women, according to the Centers for Disease Control and Prevention. A study in the American Journal of Public Health examined five common, life-threatening complications for pregnant women. While black women weren’t necessarily at a greater risk for the complications themselves, they were two or three times more likely than white women to die from those complications. “This increased risk of pregnancy-related death among black women,” study authors wrote, “is independent of age, parity or education.”
“The risk factor,” Joseph told me, “is being a black woman.”
It’s not a new phenomenon. While maternal mortality rates in the U.S. fell overall between 1935 and 2007, maternal health risks for black women steadily increased, according to a report by the U.S. Department of Health and Human Services. And although infant mortality decreased across all racial and ethnic groups between 1960 and 2011, it decreased the most among children born to white women, according to the March of Dimes. As a result, racial gaps widened: As of 2010, black women lost infants at more than twice the rate of white women.
“When you’re talking about maternal health in the U.S., obviously a major part of the issue is the racial disparity and being upfront and honest about that,” said Elizabeth Dawes Gay, co-director of Black Mamas Matter Alliance, an organization that sponsors research, education initiatives and advocates for policy change. “I’ve seen people posing questions like, Oh, what could it be? You know what it is. Just name it. Let’s talk about it.”
For Gay, that means talking about openly about racism, and the countless stories she hears from women of color across the country, detailing their experiences with healthcare providers. One women in Louisiana told Gay about the time her doctor called her an “ugly monkey.”
“This is a white, male professional calling a black woman an ugly monkey,” said Gay. “In what world is that appropriate? This is what black women are dealing with; it’s also how black women are treated in a variety of spaces. We encounter racism on a daily basis.”
It’s racism, some say, that lies at the root of well-documented differences in pain treatment for black and white women. Patient anecdotes and academic research lend credence to this idea.
For a 2017 series called Lost Mothers, ProPublica and NPR collected hundreds of stories from black women who’d dealt with healthcare discrimination, including many instances of doctors ignoring their reports of pain.
A 2012 analysis of 20 studies found that black patients were 34 percent less likely to be prescribed opioids for pain conditions like backaches, abdominal pain and migraines. Both experimental and observational studies suggest that many people, including physicians, tend to assume black people experience less pain than white people in the same scenarios.
Researchers are also looking into the physical and mental health effects of the discrimination black women too often face inside and outside the exam room.
“There’s not a level playing field in terms of the amount of stress black women are coming to care with,” said Monica McLemore, assistant professor of nursing at the University of California, San Francisco. She points to a 2010 study suggesting that black women may age at an accelerated rate due to the effects of stress. “A lifelong exposure to having all sorts of stressors — particularly stressors that are related to race and racism — (and) you have a real recipe for disaster when you come to pregnancy.”
“If we had said 400 years ago that people with blonde hair and blue eyes were less valuable, trust me, they would have bad birth outcomes,” said Joia Crear-Perry, a physician and the founder and president of the National Birth Equity Collaborative. “They would be obese, they would have higher rates of poverty, we would create structures and systems that devalue them.”
In 2018, Serena Williams and Beyoncé spoke publicly about their own life-threatening pregnancy complications. In an opinion piece for CNN, Williams said that while she had an easy pregnancy, an emergency C-section “sparked a slew of health complications that I am lucky to have survived.” At one point, when she felt shortness of breath, which she thought might be related to past blood clots, Williams tracked down a nurse, who suggested that perhaps she was confused from her pain meds.
“I think that really shone a light on how not-believed patients are,” said McLemore. “Part of not believing people, I believe, is directly attributable to racism, to not believe black women when they talk.”
Williams’ and Beyoncé’s experiences buck the notion that racial differences in maternal care are socioeconomic at their core, or that they’re ultimately a product of poor patient health. After all, Williams is an elite athlete. Meanwhile, research shows that infant mortality rates are higher for babies born to middle-class black mothers than to white mothers who never attended high school. Still, maternal health outcomes are even worse for poor women.
“Everybody suffers this [racial] disparity, but it’s a lot more profound in people who have limited resources and limited options for their healthcare, which is the population I work with,” said Michael Lindsay, an ob-gyn at Grady Memorial Hospital in Atlanta. “In Georgia, we have geographic pockets of physician-shortage, and I think there’s a role midwives and doulas can play where there is a shortage of care.”
Joseph’s Florida practice employs peer educators, lactation specialists and doulas. Together, they follow the “JJ Way,” a comprehensive system of prenatal care created by Joseph to reduce racial inequality and improve birth outcomes overall. The JJ Way covers a broad array of issues that pregnant women, particularly black pregnant women, commonly face, including those related to financial hardship.
“Comprehensive care mitigates racism,” said Joseph. “And what’s more, it eliminates the disparity. I’m providing prenatal care, but I’m also doing insurance triage,” she said. “We’ll make sure you get [Medicaid] if you’re eligible and we’ll make sure you understand your insurance.”
Joseph says the JJ Way delivers results. “When we do our work with our team,” she said, “the women go to term, the babies are fat and the moms are breastfeeding. It’s that simple. And anybody can do it. It’s not a midwifery model, it’s a patient-centered care model.”
Among children of black mothers, the leading causes of infant mortality are low birth weight and preterm birth (meaning earlier than 37 weeks). Independent research found that Joseph’s care model reduced the incidence of low birth-weight babies in at-risk populations and eliminated racial differences in preterm-birth rates in Florida’s Orange County, where Joseph practices.
“The black women were doing better than the white women in the county,” Joseph said. “Come on, now, where are you going to see that statistic ever in the U.S.?”
Joseph also continues to see patients after they give birth, screening for everything from hemorrhaging to depression. Postpartum care, she says, was standard when she worked in Europe, but not in the U.S. It’s an area of care where midwives and doulas tend to take a leading role. It’s also care that many women don’t have access to. “All of the ills that are postpartum have no home and nobody watching,” she said.
Improving maternal care overall will reduce prejudicial differences, said Crear-Perry. “Countries that value women in general and support women when they’re pregnant have better health outcomes than we do,” she said. “If white women moved to Finland, places that have more freedom for women to have access to education and equal pay, they would do better.”
Though McLemore is reluctant to put the onus on women, she thinks a patient-led movement might do the trick: “If women want better, we’re going to have to demand better, and that’s an unfair demand because when you’re a new parent, the last thing you have time to do is start an advocacy agency, but I think that’s what it’s going to take.”
In December, Congress passed the Preventing Maternal Deaths Act, now headed to the president’s desk. The legislation aims to help “women with disproportionately high rates of maternal mortality,” its goal being “to eliminate disparities in maternal health outcomes for pregnancy-related and pregnancy-associated deaths.” If signed into law, it would give states funding to track and investigate the deaths of new and expectant mothers.
“These are completely preventable deaths and that’s why the disparity is so problematic,” said McLemore. “Because we actually know what to do.”