When Venicia Gray walked into her OB-GYN’s office in 2019, she asked a direct question: “What are my chances of death?”
“You should be fine,” the doctor assured Gray, who at the time was an associate director at the March of Dimes.
The fear is real. The risks are also real.
About 3.7 million births take place annually in the U.S., and roughly 700 birthing people die from a pregnancy-related cause each year. Gray knew very well the grim data that Black women are three times more likely than white women to succumb to maternal death.
She recalled stories of women in devastating news articles personifying the Black maternal mortality crisis. Kira Johnson, a 39-year-old wife and mother, died in 2016 from a hemorrhage after doctors lacerated her bladder and improperly treated her during a scheduled C-section. She bled internally for more than 10 hours before she passed, reported her husband, who filed a civil rights lawsuit against Cedars-Sinai Medical Center in Los Angeles.
Dr. Shalon Irving—a 36-year-old epidemiologist at the Centers for Disease Control and Prevention (CDC)—collapsed, suffered a cardiac arrest and died of complications from high blood pressure three weeks after giving birth in 2017. Irving was a champion for health equity, known for researching how childhood experiences affect lifelong health.
In the U.S., about 50,000 people annually experience maternal morbidity—characterized by the CDC as unexpected labor and delivery outcomes with serious short- or long-term health consequences. Similar to mortality rates, a disproportionate number of birthing people who experience these health complications are Black. High-profile cases of morbidity include Beyoncé and Serena Williams, both of whom had emergency C-sections and have openly spoken about their near-death experiences and pregnancy complications.
Now a senior manager for maternal and infant health at the National Partnership for Women and Families, Gray recalls anxiously journaling when pregnant, bracing for a devastating outcome. “I’m writing letters to my child and my husband, like these are the things I want to happen.”
A Deeply Flawed System
Unlike Gray’s obstetrician, Dr. Mimi Niles, a certified nurse-midwife, researcher and theorist, is hesitant to verbalize outcomes to her patients. “I want to say everything’s going to be okay, nothing bad is going to happen to you. But I’m one provider—I feel like I can’t even make those guarantees,” says Niles, who’s also an assistant professor at NYU Rory Meyers College of Nursing. “The system is not designed to take care of people in the most optimal way.”
In 2019, The Birth Place Lab, a maternal health research arm at the University of British Columbia (UBC), released a groundbreaking study about interactions between patients and their providers such as obstetricians/gynecologists, midwives, family doctors and nurse practitioners. The report, titled Giving Voice to Mothers, found a power imbalance in which some women felt they were unable to make choices based on their own needs and values. A yearning for autonomy in decision-making around pregnancy, birth and baby care, was most prevalent among Black respondents, who also reported having the least control over these circumstances.
“Our key findings included experiences of what some people call mistreatment and other people call violence or human rights abuses,” says Saraswathi Vedam, the lead investigator of The Birth Place Lab and professor of midwifery at UBC. Among verbal offenses, respondents reported being shouted at, scolded and even threatened that something bad would happen to them or their baby.
When Black women aren’t listened to, the outcomes can be deadly, says Niles, who has sat on the NYC Maternal Mortality and Morbidity Review Committee. Each state has a similar panel that is responsible for reviewing every maternal mortality case in its jurisdiction and voting to determine whose lives could have been saved based on clinical and social determinants.
One of their crucial goals is to develop recommendations for improvement, as a whopping 60% of maternal mortality cases are preventable.
“When I started midwifery school, we weren’t having these conversations,” Niles says. “Those of us in the work knew what was happening, but you didn’t have the Vice President of the United States talking about this kind of stuff.” (In 2021, Vice President Kamala Harris issued a Call to Action to address maternal mortality and morbidity.)
Niles, Gray and Vedam represent a new generation of researchers, activists and birth practitioners who are advocating for more equitable pregnancy experiences that lead to decreased rates of mortality and morbidity for Black women and birthing people. While devising solutions, they must also unpack a complex slate of causes, in addition to the costly decisions, systematic structures and historic deceptions that created a culture of disregard for Black people within the American health care system.
A Multi-faceted Crisis
Giving Voice to Mothers was co-designed by a committee of service users, community health workers, NGO leaders, researchers and clinical providers from different disciplines who collaborated with the people they serve. This participatory process ensured that the people who were being studied had a say in what to study and how questions were framed. For example, instead of asking why a patient didn’t show up to a doctor’s appointment, a more nuanced series of questions might focus on the distance from a person’s home to the care facility, transportation barriers they encountered and if available appointment times conflicted with their work schedules.
Such social determinants can collide with system-level factors, such as overloaded schedules for health practitioners, and damage the relationship between patients and providers. If a patient is late for an appointment because of child care problems, a busy doctor or nurse can become frustrated, which can “come out in unhelpful ways when they’re actually interacting with the individual,” says Vedam. “Our data showed very clearly that if they felt like their provider was rushed, didn’t have time or thought they were being difficult because they were asking questions, they held back their questions.”
The health insurance a person has and their assigned hospital can also impact patients’ perinatal experiences, Niles says. Even marital status can influence what happens in the birthing room. “There are emerging [studies] of Black men reporting their mistreatment in the labor room and how they were disrespected and that makes them less effective advocates for their partner,” she says.
Medically, the discourse around Black women having fatal or near-death outcomes during pregnancy is often centered on their likelihood of having or developing conditions such as high blood pressure, obesity, diabetes and cardiovascular issues.
“However, I don’t think those issues are unique to us,” Gray says. “Black people are only 13 percent of the entire population in the U.S. We shouldn’t be such a high representation of those [maternal mortality] numbers, even if those health issues are the cause.”
Back in 2019, after a chaotic few days with sporadic information from her care team, Gray gave birth to her son early, at 34 weeks. During the end of her pregnancy, she developed high blood pressure. “I was terrified,” she says.
While her primary OB-GYN was a Black doctor, the on-call practitioner who delivered her baby was a white woman. She flagged the spike in blood pressure, “And the doctor heard me,” says Gray, who worried that racial discrimination might have affected her birth outcome. “If some superstar who has all the money, power, wealth, wherewithal and means to get pregnant—and was probably at the peak of their healthy lives—still has a terrible labor outcome, there is no one reason that doesn’t automatically point to racism.”
A Brutal History
The myriad of injustices that pregnant Black women and birthing people face—being threatened, ignored, medicalized and more—can be traced back to the transatlantic slave trade. “Historically, Black folk were not given the choice of when they can parent,” says Deneen Robinson, the director of Birth Equity Religion at the National Birth Equity Collaborative (NBEC). “When we go back to slavery, we’re talking about things like being matched up with people so that we can create a particular type of human, so the slave master could have the tool they wanted to work their field or serve in their home.”
To this day, researchers and activists are still working to dismantle myths that Black people are physiologically inferior, which a host of white physicians perpetuated throughout the 18th and 19th centuries to justify slavery.
In 1789, British doctor Benjamin Moseley released a manual of fallacies that sought to prove that Black people could endure more pain during surgical procedures than their white counterparts. Such publications provided justifications for physicians like Dr. Thomas Hamilton to brutally scar an enslaved man, John Brown, to test his theory that a Black person’s skin was thicker than a white person’s.
Between 1845 and 1849, J. Marion Sims, often referred to as “The Father of Modern Day Gynecology,” developed tools and surgical techniques that were tested on enslaved women “against their will,” Robinson says. He used the misconceptions about Black people’s tolerance for pain to condone his work.
A decade after the reconstruction era, America’s health care system started to institutionalize as hospitals, employers and the federal government began introducing health care services and private and publicly funded insurance. Before that, women mostly received pregnancy and birthing care from general practitioners as well as midwives who practiced a “very comprehensive model” of age-old healing, herbal knowledge, and a little psychotherapy, Niles says. A pregnant person’s midwife often lived in her community or nearby, offering a sense of closeness both physically and emotionally.
By the mid-1900s, birthing became big business. “I think physicians realized that they wanted to basically own birth because it was sort of a no-brainer, it was always going to generate money for you,” Niles says. “And it was easier to move care into a central location—bring the customer to you, instead of having to go out and take care of the customer. That takes so much research, time and effort.”
Meanwhile, gynecologists organized smear campaigns to discredit midwives as their competitors. They labeled Black midwives, in particular, everything from ineffective and non-scientific to unhygienic and barbarous. States also began regulating midwives, requiring them to pass exams to practice. “But their knowledge and expertise was not in the written word, it was in the physical, embodied knowledge of midwifery,” Niles says.
As the shift from home to hospital deliveries increased from 55 percent to 90 percent between 1938 and 1948, every state began tracking and reviewing cases of maternal mortality. Disparities have always existed among races since the collection of such data, however, there was a stark increase for Black mothers in the early 1970s, when they were three to four times more likely to die from pregnancy-related causes.
Black women began delivering babies in hospitals under the guise that it was safer, but that wasn’t necessarily the case. Whether intentional or not, America’s modern-day medical system was constructed under many of the demeaning ideologies that rendered enslaved women subject to breeding and experimentation.
“How people are educated in medical school and residency is that race is a ‘risk factor’ for poor obstetric outcomes like preterm birth or for undergoing more cesareans,” says Dr. Nicholas A. Rubashkin, an obstetrician and researcher who studies how race is used in statistical models in maternity care.
To be clear, he says: “It’s not race that’s the problem; it’s that racism creates poor outcomes,” says Rubashkin, who has seen this play out in the disproportionate number of Black women who receive C-sections.
This Tide Won’t Turn Itself: Creating Equitable Solutions
The migration out of community-centered births meant Black women lost the intimacy that came with midwifery, which “was a very sophisticated network of care that a hospital or health care institution can never recreate,” Niles says, explaining how midwives can have a personalized understanding of a patient’s life.
“Maybe they knew that the partner lost their job or they had just lost their grandmother,” she says. “In the health care space or the institution of health care, you kind of divorce that from somebody’s experience because you see them for 15 minutes and you’re done. You might ask things like ‘What else is going on in your life?’ but it doesn’t really root your care as a provider.”
Reclamation of midwifery surfaced in the 1960s and 1970s, mostly among white women, Niles says. But in recent years, there has been an advocacy boom “led by Black midwives and Black community leaders because of the witnessing and lived experience of not just being harmed by health care, but potentially dying while giving birth.”
In the Giving Voice to Mothers Survey, respondents whose providers were midwives experienced fewer labor inductions and reported greater respect, privacy and dignity during their perinatal journeys. While being cared for by a midwife does not preclude maternal mortality or morbidity, experts do share it as a solution for creating more equitable pregnancy experiences.
Similarly, doula support is being touted as another community-centered health care model that’s proven beneficial for expectant mothers, says Niles. Although doulas are not medically trained, they offer critical psychosocial support that fills in gaps. “It’s not always about your physical experience. Doulas could bring over a pot of soup when you’re working late; they can help with an older kid if you need them to get picked up from school,” explains Niles. “Those are the kinds of things that a lot of people in America are missing out on because we live far from our families and we don’t live in the same kind of family structure that we used to live in.”
Gray says that policymakers can play a crucial role in decreasing Black maternal mortality and morbidity rates by passing the Black Maternal Health Momnibus Act of 2021. Introduced in February 2021 by Rep. Lauren Underwood (D-IL), it’s “a suite of 12 bills that were developed based on the unique lived experiences and expertise of Black maternal health providers, patients, birth workers, advocates and birthing people themselves,” Gray says, adding that the bill is “a blueprint that centers racial equity and health equity.”
Some of the Momnibus’ initiatives include investing in social determinants of health like housing, transportation and nutrition, funding community-based organizations, growing and diversifying the perinatal workforce, and improving data collection processes and quality measures, among other initiatives.
While states like California have passed similar legislation to tackle the crisis, the federal act is still being pushed by lawmakers as data showed that maternal health outcomes worsened and disparities persisted during the COVID-19 pandemic.
Meanwhile, several nonprofits and advocacy groups across the country are banning together to achieve many initiatives that are stalled in Congress. Carmen Green of the National Birth Equity Collaborative points to the Birth Justice Rapid Response Fund, which funnels money to community-based organizations, researchers and advocates who need support.
NBEC has also collaborated with a wide array of clinical, philanthropic, academic and community-based partners to develop a training framework called Respectful Maternity Care. “We are creating tools and accountability measures for hospitals and providers to be accountable for what black mammas want: they want respect, they want a higher standard of care,” says Green. “They want to know that when they go into a birthing facility or a hospital, they don’t have to come in defense and in fear.”
The initiative will create an accountability system in which patients can report instances of discrimination and bias, and that data will be reviewed by administrators of Medicaid and other financial reimbursements that hospitals receive. For decades, “there has been no way to know where hospitals are accounting for that and then tying it back to payment,” Gray says, adding that the program will be piloted soon and coincide with similar tools such as the SACRED Birth Study, developed by Dr. Karen Scott.
Like many others in the maternal health care space, Green, who’s also a doula and doctoral student at the University of California San Francisco, School of Nursing, views her work as consequential. “We’re holding this place where we really believe that all Black mommas and babies in their villages can thrive. And that’s our vision,” she says. “We need that so in two or three generations, we can continue to say we have strong communities and strong families. I don’t believe we can have that without birth equity.”