It took two doctors’ appointments, a trip to the emergency room and an 11th-hour visit before Thanksgiving Day 2019 for Marian Dancy to learn that six months after giving birth to her fourth child, her heart was failing.
The 35-year-old mom’s symptoms started with fatigue, swelling around her ankles and an episode of temporary vision loss. But the first two doctors she saw dismissed her concerns. “You’re young. You’re healthy. This will probably pass. We’ll just keep an eye on it,” Dancy recalled being told in an interview with the American Heart Association. “I knew something wasn’t right but I didn’t have any answers.”
When symptoms of fatigue, swelling and now congestion became more severe, Dancy visited the ER where physicians performed an electrocardiogram, diagnosed her with pneumonia and prescribed an antibiotic. But she still couldn’t perform her daily activities. Days later Dancy woke up with a voice in her head: “If you don’t figure this out today, this will be it.” At an appointment that same day a nurse performed an electrocardiogram then rushed to get the doctor.
“The physician sat in front of me and said I don’t mean to scare you, but I believe I’m seeing a case of heart failure,” Dancy said. The doctor had Dancy admitted to the hospital where an ultrasound revealed that her heart’s ability to pump blood was low. A week later she received her diagnosis: peripartum cardiomyopathy, a form of heart disease that develops in the last month of pregnancy and in the months following a mom giving birth.
Pregnancy causes increased strain on the heart and researchers have found that Black women are twice as likely to be diagnosed with this disorder, take twice as long to recover, are twice as likely to worsen before getting better and twice as likely to fail to recover. These statistics are among many that illustrate how a mother’s skin tone could become her death sentence.
A maternal health crisis
The World Health Organization defines maternal death as a woman who dies either while pregnant or within 42 weeks after giving birth. The death can occur from any pregnancy-related cause or condition aggravated by pregnancy – except for accidents.
Maternal mortality remains a crisis in the United States regardless of race. The statistics have worsened since 2020 and disproportionately affect Black women.
Not only are Black women three to four times more likely to die during or shortly after pregnancy, but they are more likely to develop heart failure and other cardiovascular problems, both during and after pregnancy, according to the American Heart Association.
Sadly, these statistics transcend socioeconomics, as Black women who are educated and live in wealthy neighborhoods face similar plights.
Overwhelmed doctors, lack of understanding
Wrenetha Julion, professor and associate dean for equity and inclusion at Rush University in Chicago, attributes the worsened outcomes in Black women, in part, to negative perceptions of them and the tendency to be scolded or ignored instead of supported.
“Structural racism and bias can contribute to what [medical professionals] think about their black patients,” she said. “The patient is more likely to be blamed and told that ‘bad things wouldn’t have happened’ if he or she had started prenatal care earlier,’or ‘if you hadn’t missed that visit.’”
Such responses from medical professionals are further exacerbated by what Julion describes as the “myth of the strong Black woman”— a belief that Black women are so resilient that they can do anything without help. Such misconceptions may cause a healthcare provider to dismiss a patient’s concerns while making them reluctant to investigate.
“It’s easier to put people in a box than it is to find out what’s going on with that person,” Julion said. “It takes less time, especially when providers are overwhelmed and unable to devote the time needed to each patient.”
Feeling dismissed can amplify emotional distress, leading new and expectant Black mothers to mistrust their providers.
Turning the tide
There is an African proverb that says it takes a village to raise a child.
Making sure women survive after bringing a child into the world also takes a village — especially if the woman carrying the baby happens to be Black.
In 2000, the Association of Black Cardiologists (ABC) established the Center for Excellence in Women’s Health and the Center for Epidemiology to help focus on women’s health issues while tackling and exposing disparities—thanks to a $2 million donation from Bristol Myers Squibb. The initiative resulted in the development of registries to collect real-world data and statistics from real-world experience from front-line healthcare workers.
The ABC formed the Black Maternal Heart Health Roundtable, a collaborative task force to explore plausible opportunities, solutions and ideas to help solve the maternal health crisis. Other organizations such as the American College of Obstetrics and Gynecology, the American Heart Association and the American College of Cardiology followed suit.
Since that time, other organizations have taken steps to address maternal health disparities. For example, the National Institutes of Health devoted $250 million to maternal health during its fiscal 2017 year, some of which supported research and partnerships with ABC and other organizations. However, the exact amount devoted to the ABC and the outcomes remain unclear.
The Black Mamas Matter Alliance established Black Maternal Health Week in 2018 – an annual event in which various stakeholders convene around the country to address Black maternal mortality. The event ran April 10-17, 2024, and on April 10, President Biden released a statement on The White House website stating that his administration is “…working to grow and diversify the maternal health workforce to better serve expecting mothers by helping healthcare providers hire and train physicians, certified midwives, doulas and community health workers.”
The president also signed legislation to protect employment and workplace rights to expectant and nursing mothers. This law requires employers to honor break time and provide its nursing mothers access to private spaces to breastfeed their babies.
Finding ‘critical collaborators’
Recognizing midwives could improve outcomes in Black maternal health due to their historical and cultural roots dates to slavery. Doula care also is seen as a crucial step in reducing maternal mortality, particularly among racial and ethnic minorities.
Julion described doulas as “critical collaborators” in the healthcare system who provide physical, emotional and informational support both in and outside of the medical space.
For all their benefits, doulas have one major drawback: Most insurances do not cover their services.
Oftentimes the doctor who delivers the baby isn’t the same physician the expectant mother sees during prenatal care. So, doulas offer continuity of care.
“There’s somebody that’s consistent with her so she doesn’t feel like she’s now starting up all over again with someone. You know her traumas. You know what it is that she wants to create for this birth experience and you’re able to do that,” says Nyasia Coutee, a Detroit-based doula and lactation consultant.
Even as more healthcare organizations are recognizing the role doulas can play in a healthy birthing experience, doulas still face challenges in establishing their place in traditional healthcare settings.
“We need a standardized policy all around so that doulas can have access to anywhere a birthing person gives birth, Countee says.
Overcoming institutional and unintentional bias
One of ABC’s many initiatives emphasizes community involvement to keep Black mothers healthy. Under the communal umbrella falls preconception counseling—something Uzma Iqbal, cardiologist and Rochester Regional Health Director of the Women’s Health Program and Cardio-Oncology Program, says is critical to keeping mother and her future baby healthy.
“Many cases of Black maternal health are preventable by improving education and providing proper perinatal care,” Iqbal said. “For women who are already healthy before they become pregnant, pregnancy is almost like the first stress test for the body.”
Iqbal emphasized that women who fare poorly during pregnancy but survive it are more likely to develop heart disease later in life.
Julion agreed, noting that medical providers should receive education not only to overcome institutional and unintentional bias but also to help identify other contributing factors to poor health outcomes in Black women during their maternal journey. She encourages medical professionals to probe a bit more into their patient’s social history instead of minimizing their concerns or feeding into the often-purported Black female resilience.
Exploring the role of stress is one important factor, given how it can increase blood pressure and the release of stress hormones that kick the body into fight-or-flight mode.
“Stress experienced by Black women can come from many causes,” Julion said. “I believe that certain conditions that are more commonly found in Black women are actually brought on by social and environmental influences, rather than genetic predisposition.”
She described environment and racism as “prime contributing factors.”
‘Everybody needs to pay attention’
The ABC recognizes the strength of engaging the Black community to improve maternal health outcomes. Perhaps one of the most potent elements of community involvement lies in the partnerships between the medical community and faith-based centers and institutions, given the historical importance of churches and other faith-based institutions in the Black community. However, Julion says faith-based centers are just one element of creating an environment in which new and expectant Black mothers feel supported. Family members should also participate—not just the mother’s partner.
“Communities shouldn’t think of pregnancy as just a routine thing because it’s not the scenario for Black women,” Julion said. “I’m not saying making anybody paranoid or overanxious, but I am saying to pay attention.”
She encourages community centers and leaders to teach all members of the community to recognize common warning signs of health issues in pregnant women. The CDC has crafted what is known as a CDC Care Card, a handout that has at least 10 warning signs that could indicate problems during pregnancy and after delivery.
“You should be able to sit in church next to a pregnant woman with swollen ankles and say, ‘Your ankles look really big—we should go get checked out,’” she said. “Everybody needs to pay attention.”
Other community efforts proposed by the ABC include community outreach programs and engaging the media. Results are pending…
Perhaps the greatest role is that of the Black woman who unfortunately, often must fight for herself and the life of her baby.
Julion’s advice? “Pay attention to your body and recognize when something’s not right with you,” she said. “Don’t let people tell you you’re wrong, dismiss your concerns, but lean into your family, children’s father, community instead.”
Holding hospitals, clinics accountable
Insurance companies as well as local, state and national health organizations must hold hospitals, clinics and other institutions accountable when it comes to gathering and reviewing illnesses, complications, and death-related information in childbearing women, Julion noted.
Such data collection includes not only gathering information on patients of color but also the race and ethnicity of the provider. According to its report, ABC believes that collecting and disclosing the race and ethnicity of the clinicians allows them the option to choose providers with whom they feel more comfortable.
However, ensuring access to a more diverse pool of healthcare providers is easier said than done.
Black people compose 13% of the U.S. population, but Black physicians make up approximately 5% of all physicians. Fewer than half of them are Black women (2%). These statistics give further weight to communal support and the need for Black mothers and those who love them to advocate for new and expectant black mothers.
“[Black] women should not be experiencing pregnancy as a solo act,” Julion said.
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