Forgotten Mothers: This story is part of an ongoing series by The Frontier to examine and investigate maternal health in Oklahoma.
Marnie Jackson believed it was divine intervention when she discovered she was pregnant with a baby girl only months after her own mother had died.
She had always wanted four kids, and at age 38, she considered another daughter a blessing.
But about a month after Jackson gave birth to a healthy baby in a Tulsa hospital in 2013, she started to feel “horribly bad.” Within weeks, she started coughing up blood. A few more weeks passed, and she was in the hospital. Her heart was failing.
“If I had waited one more day, I would have had a heart attack,” Jackson said.
Black women are nearly three times more likely to die during or shortly after pregnancy than white women in Oklahoma. They also face higher rates of life-threatening complications related to pregnancy or birth, such as in Jackson’s case.
Experts and researchers say the issue is systemic and has myriad factors: Black women are more likely to experience barriers to quality health care, including racism and unconscious bias. They are also more likely to face economic hurdles and have chronic health conditions.
Oklahoma has a state committee that reviews maternal deaths, but even as the number of women dying in the state has steadily increased over the past few years, the committee has never issued a report on its findings. Only in the last year has the committee started to track whether women’s deaths might have been preventable. It does not review cases of women who had life-threatening complications related to birth or pregnancy but survived.
Black mothers in Oklahoma were 2.9 times more likely to die during or shortly after pregnancy than white mothers from 2009 to 2017, state health department data analyzed by The Frontier shows.
The maternal death rate for black women for those nine years was 52 deaths for every 100,000 births, while the maternal mortality rate for white mothers was about 18 deaths per 100,000 births, according to the health department data.
The overall maternal mortality rate in Oklahoma for 2009 to 2017 was 23.6 per 100,000 births, the data shows.
For every woman who dies, about 70 have life-threatening complications related to birth or pregnancy, according to data obtained from the health department. The state does not track those cases by race or ethnicity, but studies have shown and experts agree: Maternal deaths and life-threatening complications disproportionately affect black women.
“What never stops shocking me is that regardless of socioeconomic status, regardless of health, regardless of education, it doesn’t matter what the status is. It’s so much worse for black women,” said Alice Blue, the lead quality improvement officer for the Tulsa-based Take Control Initiative, which studies maternal health and provides free contraception.
The problem is not unique to Oklahoma. Across the country, black mothers die at a rate 3.3 times higher than white women, and American Indian or Alaskan Native women die at a rate 2.5 times higher, according to a recent Centers for Disease Control and Prevention study.
The study determined about three in five pregnancy-related deaths were preventable.
Experts and researchers agree there is no single cause for the racial disparities — the problems are systemic.
“We don’t think there’s a silver bullet,” Blue said. “You really have to work from several different perspectives. It’s important because if we do focus on the marginalized, it will improve the entire system.”
Experts and researchers say black women commonly experience barriers to quality health care, such as racism and unconscious bias. At the same time, black women are more likely to be uninsured before and after pregnancy. They are also more likely to have chronic conditions such as diabetes, obesity and hypertension.
The state’s health department released a report in 2009 that surveyed mothers shortly after delivery and found pregnant black women on average received different medical information from their doctors than white women did.
Black mothers were less likely to get information about proper nutrition and appropriate weight gain than white mothers, according to the report. Instead, doctors more often counseled black women on illicit drug use and physical abuse when compared to white women.
“Oklahoma needs a standard of prenatal care that is followed by all prenatal care providers to ensure that all women receive the same high quality care necessary to reduce stress during pregnancy and ensure healthier outcomes for mothers and infants,” the report stated.
“We really need to look at the disparities for African-American women. Is that because of genetics? No, it’s not,” said Belinda Rogers, director of maternal-child health and government affairs at Oklahoma March of Dimes.
Rogers also pointed to what some researchers call “weathering”: chronic stress in black women that can lead to a myriad of other health problems.
“It’s really affecting their health outcomes,” Rogers said. “I think we really need to stop and look at race being more implicit bias and racism, and looking at that and really trying to improve access to care and quality of care.”
Jackson worked at the Tulsa Health Department as a community systems development specialist for maternal and infant health. She educated women on being healthy before, during and after pregnancy, as well as safe sleep practices for babies.
Jackson was confident she knew all the right questions to ask doctors and how to advocate for herself during and after delivery. Jackson was informed. She felt prepared.
She gave birth to a healthy baby on March 15, 2013. She delivered by Caesarean section — as she had with all her children. But four weeks later, she started to feel “horribly bad.”
Jackson was coughing, had back spasms and trouble breathing. At first she thought it was her asthma. Jackson called her obstetrician to tell him of her symptoms, but he told Jackson to see her primary care doctor. Jackson’s primary care doctor told her to see her obstetrician.
Finally, she was prescribed asthma medication. It didn’t help.
As time went on she began to feel worse. When she started to cough up blood, she immediately scheduled an in-person visit with her doctor. She ended up seeing a physician’s assistant, and X-rays showed she had pneumonia in both of her lungs.
She returned to the doctor multiple times over the course of a month, but she never felt as if her condition was improving.
“Marnie, you have double pneumonia,” Jackson recalls the doctor telling her. “You’ve got to continue doing the breathing treatments, taking the antibiotics, just following the routine.”
Four more weeks went by and her condition continued to worsen. She could hardly take a few steps without wheezing.
“I felt like I couldn’t barely walk five feet without feeling like I was going to black out,” Jackson said.
A national study that focused on five types of pregnancy complications found black women were two to three times as likely to die than white women who had the same conditions.
A paper published in Clinical Orthopaedics and Related Research in 2011 found “Racial/ethnic minorities consistently receive less adequate treatment for acute and chronic pain” than white people did.
C-sections have a higher risk for complications than vaginal births and black women were more likely to have the procedure done compared to other groups. In fiscal year 2018, SoonerCare paid for almost 29,000 deliveries — just over a quarter of which were performed via C-section, according to Oklahoma Health Care Authority data.
Meanwhile, when looking at only black mothers, they gave birth by C-section more than one-third of the time — more than any other group in the state.
The issue of racial disparities has entered the national spotlight in recent years. Beyoncé and Serena Williams last year helped to put a well-known face on the problem. Beyoncé shared her story with Vogue about the life-threatening complications she had with the birth of her twins. Williams also told Vogue she almost died after delivering her daughter through an emergency C-section.
Maurianna Adams, education and outreach director for the Take Control Initiative, said despite the research, blame for bad pregnancy outcomes often falls solely on the woman.
“If people were compliant, if they were more healthy, if they followed directions, if they do this, this or that,” Adams said. “But even if they do all of those things, if you don’t address the structural factors, it’s not going to get better and it hasn’t.”
Due to economic factors, black women are more likely to fall into an insurance gap before and after pregnancy.
Oklahoma’s Medicaid program, SoonerCare, has two programs that specifically serve low-income mothers: Soon-To-Be-Sooners and SoonerCare Choice.
Women lose benefits from the Soon-To-Be-Sooners program as soon as their pregnancy is over. Mothers on SoonerCare Choice lose coverage six weeks after pregnancy.
But even when black women do have access to health insurance, there are other barriers that may prevent them from seeking treatment.
In late 2017, NPR, the Robert Wood Johnson Foundation and the Harvard T.H. Chan School of Public Health published a study that found 32 percent of black people felt they had been discriminated against at a clinic or doctor’s office because of race. Another 22 percent said they avoided medical care because they were worried about being treated poorly or being discriminated against.
In a 2017 investigation that listened to stories from more than 200 African-American mothers, Propublica and NPR found that “being devalued and disrespected by medical providers was a constant theme.”
The barriers to health care black women face are especially worrisome, since they are more likely to need health care during the postpartum period.
Black women are more likely to experience complications following delivery, regardless of their insurance or which hospital they deliver at, a national study found. They are also less likely to receive needed procedures and more likely to get less useful procedures.
Some of the problems need to be addressed in medical schools, when doctors are learning how to interact with patients, said LaTonya Scott, quality improvement officer for the Take Control Initiative.
“So doctors can check themselves and say, ‘Did I intentionally make sure that I spoke to LaTonya as a black woman the same way I would have (with a white woman)?’” Scott said. “I do really think that it also has to come up with them as well.”
Jackson didn’t think her doctor was listening or taking her seriously, and one weekend she decided she felt bad enough for a trip to the emergency room. She was feeling so sick that she prayed the hospital would admit her.
When she arrived and wrote down her symptoms at check-in, she didn’t even get the chance to sit down before they rushed her back to a room.
Tests showed Jackson’s heart was failing.
Jackson, who had no history of heart problems, stayed in the hospital for three days. Doctors later diagnosed her with peripartum cardiomyopathy — heart failure that happens near the end of pregnancy or in the five months after delivery.
By that point, Jackson had been feeling terrible for weeks. She wishes someone would have caught the condition sooner.
“I am in the professional world and I knew what to ask, but sometimes I don’t want to step on boundaries,” Jackson said. “I wanted to trust and believe my doctor was telling me right. But … by the second week, I should have (sought) a second opinion. I think we want to trust.”
Jackson still struggles with her health.
“To this very day, I am still in heart failure,” she said. “It is an everyday fight to recover and reclaim my health.”
Jackson has expanded her efforts to educate women on healthy pregnancies, as well as how to advocate for themselves and recognize their bodies’ warning signs.
She often worries: If she struggled so much to get someone to listen to her, what do other less-informed women go through?
“We have too many women out there who are just suffering because they don’t have nobody who will listen to them,” Jackson said.
“Now I got a six-year-old that I got to be here for. It has been a challenge, but then I look in the community, and I want to help these women to fight when they don’t have a voice and teach them to have a voice.”
Marnie Jackson launched a group to teach and support other women in pregnancy, called HER Voice. For more information, email Jackson at firstname.lastname@example.org or call her at 918-698-0493.