Almost six years ago, Tomeka Isaac said she came very close to joining a list no one wants to be part of — the tally of Black women who have died related to pregnancy.
In May 2018, Isaac’s pregnancy took a turn at 35 weeks when she passed out. She was rushed to a small hospital in Pineville, North Carolina, and admitted to the emergency room.
At the hospital, a doctor told Isaac and her husband that her son had died in utero. They also diagnosed her with HELLP syndrome — a life-threatening pregnancy complication.
Issac said she was shuttled to another hospital for emergency surgery, which included a cesarean section. She was bleeding internally and had a softball-sized blood clot.
“I was dying,” Issac said. “They threw everything at me — including the kitchen sink — to save my life. They cut me open. They packed me with sponges … I coded.”
“It was a very traumatic experience for my family,” she added. “My poor husband lost his son and in that moment didn’t know if he would lose his wife as well.”
Isaac ultimately underwent seven surgeries and stayed in the hospital for 45 days before going home without her son, whom they named Jace.
After she got home, she went back through her medical records, wanting to understand what happened. That’s when the 40-year-old Isaac learned that, even though she was at an elevated risk for preeclampsia due to her age, her doctors never took a urine sample throughout her pregnancy — a routine test that could have helped identify her condition. High protein levels in her urine could have revealed the complication and led to better — and earlier — intervention.
“When we realized that, I was mortified,” Isaac recalled. “I was so devastated.”
“I didn't know that was a thing. I didn’t know that they weren't doing it. I didn’t know they should have been. I remember going into the doctor's office one day and the nurse asked me, ‘Do you need to pee?’ And I said, ‘No, but do you need for me to pee?’ That's different, right?”
Isaac shared her story Thursday at a Black Maternal Health Conference in Charlotte. Her personal experience pushed her to found Jace’s Journey — a nonprofit working to address disparities in maternal health outcomes — with her husband in 2019.
“I had the resources. I had the access. I had the education,” said Isaac, who has an advanced degree in business and has worked as an executive in Fortune 500 companies. “I went to every single appointment to leave that hospital without my son. That trauma brought me here.”
Her story of nearly dying during childbirth is not an isolated incident. The statistics show it’s all too common for Black women to face pregnancy-related deaths and severe maternal morbidities.
Black women in the United States are three times more likely to die from pregnancy-related causes than white women, according to the Centers for Disease Control and Prevention.
More than 300 people frustrated by this persisting disparity gathered at Charlotte’s Friendship Missionary Baptist Church for a conference hosted by Care Ring, a nonprofit organization providing health services to the uninsured, underinsured or those lacking access to affordable health care in Mecklenburg County. Their goal: to discuss and brainstorm ways to improve Black maternal health outcomes. About a quarter of attendees were Black mothers who were informed by their own experiences and interactions with the health care system.
“I'm glad that we're here, but it's frustrating because we shouldn't have to be here,” said Raynard Washington, Mecklenburg County’s public health director. “This is not a problem that has to exist. It doesn’t exist everywhere.”
A persisting disparity
The maternal mortality rate in the United States greatly exceeds the maternal mortality rates of other Western countries. The U.S. maternal mortality rate in 2021 was 32.9 deaths per 100,000 live births, according to data from the Centers for Disease Control and Prevention, up from a rate of 20.1 deaths per 100,000 in 2019. This amounted to 1,205 women nationwide dying from maternal causes in 2021.
In North Carolina, the overall rate of maternal death is higher than the U.S. average. In 2021, the state’s maternal mortality rate was 44 deaths per 100,000 births, according to CDC data compiled and analyzed by the investigative news organization MuckRock.
Additionally, more than 80% of maternal deaths are preventable, according to data collected from Maternal Mortality Review Committees — groups in 36 states that gather to examine deaths during or within a year of pregnancy.
The North Carolina Maternal Mortality Review Committee released its latest findings in February on maternal deaths associated with pregnancy that occurred in 2018 and 2019. Out of 181 deaths reviewed, committee members determined that 76 deaths were pregnancy-related.
Among the pregnancy-related deaths, the group found that mental health conditions were the overall leading cause of death, followed by overdose. For Black maternal mortality during this period, homicide was the leading cause of death.
Notably, discrimination — by race and other personal characteristics such as substance use, weight and incarceration history — was determined to be a probable contributing factor in nearly 70% of pregnancy-related deaths.
Additionally, the committee concluded that in 85% of pregnancy-related deaths in North Carolina in 2018 and 2019, there was “at least some chance of the death being averted by one or more reasonable changes.”
However, these maternal deaths only reveal a fraction of maternal health outcomes and the disparities that exist.
“We talk a lot about maternal death, but for every one pregnancy-related death in North Carolina, more than 40 deliveries involve a severe maternal morbidity — what we call a ‘near miss,’” Belinda Pettiford, chief of the Women, Infant, and Community Wellness Section at the North Carolina Department of Health and Human Services, said at the conference.
“We are concerned that, even when looking at severe maternal morbidities, we have an alarming racial-ethnic disparity,” she said.
Experts argue that the stark maternal health disparities are driven by deeply embedded social and structural inequities. For example, they say differences in health insurance coverage and access to care and education drive worse maternal health outcomes for people of color.
Research has found that disparities persist even when controlling for underlying social and economic factors, which points to the “roles racism and discrimination play in driving disparities,” according to a report by KFF, a nonpartisan nonprofit focused on health research and policy.
Need for collaboration
To tackle stark maternal health disparities, Tchernavia Montgomery, executive director at Care Ring, said it will take interdisciplinary collaboration, a concept that was the theme of Thursday’s conference.
“There are so many different disciplines, some of which are growing in North Carolina — doulas, midwives, community health workers,” Montgomery said. “Everyone has something of value to add to the journey of a woman, both preconception and postpartum. We all have to work together.”
The Black maternal health crisis does not begin or end with OB-GYNs, she said.
Conference speakers said system-level change is needed to improve outcomes for Black people giving birth, and that will take involvement from stakeholders across health care systems, communities and government. Partnerships can be crucial, speakers said, allowing innovative ideas to come to fruition and pooling resources to better serve patients.
For example, Care Ring launched A Guided Journey in partnership with Mecklenburg County Public Health in 2021 to improve health outcomes and combat disparities before, during and after pregnancy. The program connects pregnant women with a community health worker who will help families get connected with a doctor, address social determinants of health like nutrition and housing, and provide education up until the child turns 2 years old.
“We try to assign our community health workers to our clients to someone who looks like them, who understands their language, who understands their culture so those individuals are more equipped to influence positive change within those lives,” said Omeika Dhanpaul, program supervisor of A Guided Journey. “We want to make sure that clients are confident enough to say, ‘Hey, I can trust this person. I can trust what they're telling me. I can trust the information that they're sharing with me.’”
Jonisha Brown, a family physician in Charlotte, said resources and support offered need to be tailored to the community because Black patients and their experiences are not a monolith.
Amid the discussion of working together to improve outcomes, speakers repeatedly emphasized that patients’ voices must be at the center of any intervention.
But, Keyona Oni, a family medicine physician, said that didn’t happen for her when she was pregnant. Oni shared that when she moved to Charlotte in 2019 right before the onset of the COVID pandemic, she did not know she was pregnant and had to quickly establish care with an OB-GYN that did not reflect or understand her needs.
Oni said she went to an appointment, shortly after the murder of George Floyd and the progression of COVID, full of anxiety — which she expressed to her physician. But she felt her feelings were dismissed.
“I left that appointment devastated, maybe a little traumatized,” Oni said. “When I re-entered health care after my maternity leave, I found that the people I was providing prenatal care for were having similar experiences — feelings of isolation and extreme anxiety, not just for their own health and the outcome of their pregnancy, but for their partners traveling for work and traveling in communities that may not be safe for them racially.”
Informed by her own experience and what she heard from her patients, she said she partnered with behavior health specialists so that every patient, at their first prenatal visit, can meet with a specialist as an introduction.
“That portion of the visit lasted longer than mine as a physician,” Oni said. “It opened my mind and my perspective of what our patients really needed. What I do as a physician is a small part of what the community needed.”
Racquel Washington, from Atrium Health, said that addressing Black maternal health disparities will take time and people working together, not in “silos.”
“We're all on the same team,” said Washington, a community doula program and project coordinator at the health system. “We all want the best outcomes. We need to remember that as we move forward.”
Vision for the future
Simone Gales, a Mecklenburg County mother of three, community health worker and doula, shared her vision for Black birthing people at the conference.
“Every mother should have a happy birth experience where she feels calm, relaxed and supported,” Gales said. “That will be my dream. That's how I imagine that birth should be, and that's how I would like for us to start making those changes.”
When Care Ring hosts its second Black Maternal Health Conference next year, Montgomery said she hopes that reality will be more within reach.
This article first appeared on North Carolina Health News and is republished here under a Creative Commons license.
North Carolina Health News is an independent, non-partisan, not-for-profit, statewide news organization dedicated to covering all things health care in North Carolina. Visit NCHN at northcarolinahealthnews.org.