The 3-part ENDANGERED series about Black maternal health in Iowa was supported by the Journalism and Women Symposium Health Journalism Fellowship, with the support of The Commonwealth Fund. (www.blackiowanews.com).

Bailey professional headshot: Photo courtesy of Bailey.

In 2020, while Black Iowans battled disproportionate COVID-19 infections, the grass-roots Iowa Black Doula Collective began fighting another critical health disparity: Black Iowans are six times as likely as white Iowans to die during pregnancy or within the first year of giving birth.

“What will it take? How many lives will we have to lose?” said Ebonie Bailey, executive director of the Iowa Black Doula Collective. “How long will we have to beg to be heard and treated as a whole human?”

The collective has raised more than $200,000 and trained 64 Black doulas, who receive certification by DONA International.

In the sixth whitest state, Iowa Governor Kim Reynolds, a Republican, and the Republican-led legislature have worked to ban abortions after six weeks, and the legislature opted not to extend Medicaid’s postpartum coverage period. It’s in this environment Bailey is fighting to prevent Black birthing people from dying preventable deaths and sustaining childbirth complications.

Iowa’s Maternal Mortality Review Committee studies maternal deaths and develops preventative strategies. Nurse Stephanie Trusty is the Iowa Department of Health and Human Services project coordinator for the state committee. She said the 12-member committee previously met once every three years but has ramped up its meetings and will meet three times this year, in part, because of an increased number of maternal deaths.

Iowa “has such a horrible disparity for Black women,” but also other groups are “going in the wrong direction,’ Trusty said.

The department and the Iowa Medical Society partner on the committee. which receives funding from the Centers for Disease Control and Prevention. The money pays for full-time departmental personnel who extract data, she said.

The committee’s last report was released in 2021 and found structural racism and discrimination were contributing factors in 40% of maternal deaths. The committee is expected to release its next report in the spring of 2024.

The discrimination rate includes more than structural or interpersonal racism and can also include, for example, a "white woman who was discriminated against for a substance abuse disorder" or provider bias, Trusty said.

"It doesn't always mean it was a person of color," she said.

The committee provides the rates by race every two or three years when there is enough viable data, she said. The 2020 report found Black people were six times as likely as white people to die from pregnancy-related complications. The 2021 report didn’t include that rate.

"It's not like we're trying to suppress it. We just want it to be accurate,” Trusty said.

Maternal mortality rises

A maternal death is any death occurring in a pregnant person up to one year after delivery. The U.S. tops the list of developed countries for its maternal death rate, with the highest rates centered in the northern Mountain states, the Midwest and the South.

Nationally, Black patients are three times more likely than white patients to die of pregnancy-related complications, and according to the CDC, 80% of the deaths are preventable.

Iowa is experiencing a decline in labor and birth services and has the 26th-highest maternal mortality rate per 100,000 live births, according to the Kaiser Family Foundation.

"We're the worst of all 50 states in the number of OB-GYN to women of reproductive age, and that trend is going to be really difficult to change going forward,” Trusty said.

Black Iowa babies are also at risk, with 10.7 deaths per 1,000 live births, the highest of any racial and ethnic group, according to a 2022 March of Dimes report.

The COVID-19 pandemic exposed the fragility of the nation’s health care systems. COVID-19 was a contributing factor in 25% ofmaternal deaths, which increased during the pandemic.

‘Structural racism: It exists’

“Somehow we need to get the truth out there that this is what has been happening and continues to happen, and this is what it looks like,” said Carrie Romo, a middle school principal in Des Moines and married mother of four.

Ebonie Bailey, cofounder and executive director of the Iowa Black Doula Collective, at the collective's Community Baby Shower held last July in Des Moines, Iowa.

It takes a village to raise a child, the adage goes. Many doulas said “doula work” is already a part of Black culture. It’s a way to support and educate pregnant friends and family about prenatal and postpartum care, the kind of support they’ve experienced during their own pregnancies.

It’s the type of care Black people sorely need in these times of political acrimony, the aftermath of the pandemic and the lingering tensions following the murder of George Floyd, doulas said. It’s an era marked by increased hate crimes and persistent racism — and in Iowa, a Republican-controlled state government that has passed legislation to quell diversity, equity and inclusion.

The Iowa Black Doula Collective began training Black doulas to fight the discrimination, marked by the verbal abuse, denial and delay of pain medication and treatments, provider bias and stereotyping, they said are common and fueled by anti-Blackness, a contention state, national and global data confirm.

“By empowering Black mothers with accessible, unbiased, and quality care, we can begin to reverse this tragic trend and safeguard the health and lives of Black mothers and their newborns,” Bailey said.

Studies have shown some doctors believe myths about Black people. Institutional racism is embedded in hospital systems’ rules and regulations, and structural racism is embedded in laws, policies and practices to prevent access to services by race, studies show. Researchers have found racism — not Black women’s genetics, diet, culture or lifestyles — contributes to the inequities.

“The health care system is inherently broken and racist,” said Dr. Ndidiamaka Amutah-Onukagha, the Julia A. Okoro Professor of Black Maternal Health at Tufts University School of Medicine and director and founder of the Maternal Outcomes for Translational Health Equity Research Lab. “And if we are going to start to make these inroads, we need to do it from the people that are closest to it who, frankly, have experienced it.”

Jacqueline Hunter is a married mother of four who moved to Dubuque six years ago. A new doula, she owns Centering Joy Doula Services. She said white people in the city of 59,119 people, of which 2,500 are Black, inherently view Black people as being deficient — a systemic problem that is present in “every realm of our life.”

“We’re looked at as less than,” Hunter said. “When they address and look at Black folks it’s always, always, always, in my opinion, from this deficit.”

After Iowa Gov. Kim Reynolds signed a 6-week abortion ban into law in July, a temporary injunction has blocked its enforcement until legal challenges conclude, which means abortions are still legal. But if enacted, could more pregnancies and births of Black Iowans be put in jeopardy?

Abortion bans and restrictions have a chilling effect on doctors and providers and will worsen maternal mortality and infant health outcomes, said President and CEO of Planned Parenthood North Central States Ruth Richardson.

“I think it's really important to understand how much challenges around those health care policy decisions can have really devastating impacts,” she said.

A study published in the Journal of the American Medical Association estimated maternal mortality rates in Iowa doubled from 1999-2019, from 10 to 22 per 100,000 births. Iowa’s already disproportionate Black maternal mortality rates decreased slightly from 26 to 24.3, during the study period. However, in 2012, the rate for Black Iowans soared to 63.2 per 100,000 births, the researchers found.

“Most maternal deaths in the U.S. are preventable, so any number of deaths in a state is cause for concern,” Laura Fleszar, a researcher at the University of Washington's Institute for Health Metrics and Evaluation and lead author of the study, told Black Iowa News. “This also means that targeted interventions have the potential to make a large difference.”

Fleszar said researchers found “statistically significant increases” in maternal mortality rates for Black individuals and those of other racial and ethnic groups, and researchers were surprised to see persistent disparities over time in many states.

Des Moines physician Deborah Turner, who has practiced gynecologic oncology for 35 years, explained health care disparities to attendees at the 4 Seasons of Black Women’s Health Conference held in August in Des Moines.

Turner told the 10 workshop attendees that health care disparities are caused by various factors, including a lack of access to insurance, staffing shortages, transportation and workplace barriers, language barriers, lack of education and educational levels, poverty levels and geography, such as rural vs. urban.

“For African-American women, there are some other very specific things,” she said. “Structural racism: It exists. It exists. It exists.”

Issues that providers “don’t like to talk about” also include provider bias and stigmas against obesity, among others, she said.

Doulas change the game

“So for anyone who is not familiar with a doula, we are not midwives. We not catching no babies,” Bailey said to chuckles from attendees at the Iowa Black Doula Collective’s Community Baby Shower last summer. “What we do is prepare you for birth.”

A pregnant Tiffany Adams at the Iowa Black Doula Collective's Community Baby Shower held last July in Des Moines, Iowa.

DONA International, a doula-certifying organization, defines doulas as trained professionals who provide continuous physical, emotional and informational support to clients before, during and shortly after childbirth to help them achieve the healthiest, most satisfying experience possible. Some doulas specialize in assisting birthing people during their pregnancies and during the postpartum period.

Black Iowa doulas said they want to wrap their clients in care, provide them with individualized support and empower them to push back against medical providers who too often dismiss their concerns and stereotype them.

During a home birth, Hunter’s son presented as breech. Her midwife bypassed several hospitals and took her to the farthest one where she nearly died.

“They swore up and down I was on drugs,” she said. “I ended up hemorrhaging with him. I almost lost my life.”

Hunter said the hospital staff didn’t care about her and she felt no sense of comfort in their presence. Now she works as a doula to ensure her clients will never feel that way.

Black individuals are twice as likely as white individuals to experience severe birth complications, such as hemorrhage, the most common cause of injury and death, and peripartum cardiomyopathy, preeclampsia and septic shock, research shows.

“So if we are saying ‘OK, this hurts: Take into consideration that we might really hurt, instead of saying, ‘Oh no, let's hold off for an hour. Let's see if you can tolerate this pain before we give you something,’” said JaCarra Walker, a doula from Davenport who is a member of the Iowa Black Doula Collective.

Data show the most educated and wealthiest Black individuals have similar pregnancy-related outcomes to the poorest white individuals.

“If you see that Black girl coming into your office, or that Black woman with a Ph.D. walking into your office, and you still don't see her in the same way as a white woman with a Ph.D., then you're going to show up thinking that they're less than and that quality of service is never ever going to be what it should,” Hunter said.

It’s happening to celebrities like Beyoncė, professional tennis player Serena Williams and Tori Bowie, an elite Olympic athlete who recently died of complications from childbirth. High-profile tragedies and historic mistreatment factor into Black people’s concerns about giving birth in hospitals

Lanette Nelson is a program manager for the Healthy Start program at EveryStep, which works to improve maternal and infant health outcomes and reduce maternal and infant mortality in certain zip codes in Polk County. About 7.8% of residents in the state’s most populous county are Black.

“If I had a magic wand and could get rid of the bias and the racism and we could treat people who are pregnant well — and take their complaints and what they're telling you seriously — I think that would make things a lot better,” she said.

Nationally, the doula movement is expanding, which research shows positively impacts maternal and infant health outcomes. U.S. lawmakers have continued to push for the federal Black Maternal Health Momnibus Act, which contains 13 individual bills, one of which was approved and protects mothers in the military, to provide funding, support and programs to comprehensively address the preventable crisis.

Iowa advocates hope doulas and a recent Iowa law certifying midwives, HF 265, will improve care for birthing people.

“Nationally, we just need to do better with our pregnant people, period. Because our pregnant women are dying at a rate higher than any other developed nation in the world,” said Nelson.

Bailey wants the collective’s doulas to walk into Iowa’s hospitals highly educated, she said.

“We try to be the Gucci of doulas,” she said. “I want our families to trust the doulas and to know, above all else, this doula has my back. If nobody else in this hospital setting wants to hear me, if no one else wants to listen to me, my doula is going to be here to listen to me.”

If they continue down this road’

President Joe Biden requested $471 million in funding to reduce maternal mortality and morbidity rates, improve access to care in rural communities, expand implicit bias training for health care providers and support the perinatal health force.

According to a 2023 report from the March of Dimes, more than a third of Iowa’s counties can be classified as maternity-care deserts, which means there are no birthing facilities or obstetric providers.

Richardson, of Planned Parenthood, said she’s concerned maternal health care deserts will worsen, “If they continue down this road.”

In 2022, March of Dimes ranked Iowa a “C” on its report card. According to the report, the preterm birth rate among Black people is 36% higher than all others.

In Iowa, 25% of pregnancy-related maternal deaths in 2021 happened between 43 days and one year after birth, according to the state’s Maternal Mortality Review Committee. That time period would be covered under a Medicaid postpartum extension.

A CDC survey in August found 30% of Black Americans reported mistreatment during pregnancy and delivery care, compared to 20% of white Americans. Forty percent of Black Americans reported the highest rates of racial discrimination. Americans who lacked insurance or used public insurance at the time of delivery reported more mistreatment during maternity care than those with private insurance, the report found.

A systemic problem

Iowa was one of three states that chose not to extend Medicaid’s postpartum coverage period from 60 days to one year, something researchers and doulas believe would save lives. Nationally, Medicaid is the primary payment source for 64% of Black births, compared to 28.1% of white births.

“I definitely think that it should be extended to 12 months because 60 days is not enough

time,” Nelson, the program manager, said.

Mental health issues can emerge long after birth, which means if women happen to miss their initial postpartum appointment, they’d be outside of the 60-day window for coverage, Nelson said.

Registered Nurse Angela Mickens Bolden is vice president of the nonprofit Black Women 4 Healthy Living, which recently held its inaugural health conference. She told attendees postpartum depression is sometimes mistaken for bipolar episodes so a longer Medicaid postpartum coverage period is crucial.

“We need to get the right people in the right offices to actually speak on it,” said Mickens Bolden.

‘There’s not enough empathy around the Black community'

The main reasons Black people in the U.S. and nine other countries in the Americas experience serious complications or death during pregnancy or after birth is due to systemic racism and sexism in medical systems, a United Nations analysis revealed in July.

“In medicine, we know racism is a real thing,” Romo said. “More people have awakened to that idea.”

Romo, an activist who is bilingual in Spanish and has a bachelor’s degree from Central College, a master’s degree from Drake University, a specialist degree in education and a principal’s endorsement, experienced several troubling issues during the birth of her children.

“I always got the practitioner. So I kind of felt like historically, Black people, particularly Black women, have been experiments,” Romo said. “So having less a qualified individual always see me, I felt some type of way about that.”

Bailey said responsibility for the devastating issue lies at the intersection of systemic racism, inadequate health care policies and healthcare providers' biases.

“There is not enough empathy around the Black community,” Bailey said. “Get to know who we are. Know how we communicate. And if you don’t understand, ask.”

Part of the problem is providers won’t ask but instead will talk among themselves, she said.

“Providers will say, ‘Oh my God. I had this mom. She was just yelling and fussing,’” Bailey said. “Because she was scared? Because she didn't understand what you were trying to tell her was happening? Because you invoked fear in her?”

Iowa has eliminated diversity training in some institutions at a time when “We need it even more,” Nelson, the program manager, said.

“We’re going to be on guard a little bit more when we go into these settings,” Nelson said. “We've got a lot of historical things that have happened, and we have reason and right to kind of be on guard a little bit.”

Nelson said it’s important not only to educate pregnant people and families but also medical providers, case managers and staff in medical and social service areas about the root of the disparities and not blame it on Black people’s existing medical conditions.

“There are some providers that think it’s because we’re Black. We have higher rates of everything,” said Nelson.

It’s imperative maternal health care providers genuinely listen to and respond to Black people’s concerns and respond quickly to warning signs, Nelson said.

“You have some doctors that just want to jump to the C-section,” Nelson said.

But, C-sections can increase a woman’s risk of clots, hemorrhage and infection, she said.

Nationally, research shows a disproportionate number of Black individuals deliver by C-section, according to an August CDC brief. The C-section rate for Black individuals is 36.8%, compared to 32.1%, for white individuals. Delivering by C-section is associated with increased risk.

Bailey said that’s a problem.

“With these bad apples, we’ve got to prune these trees,” Bailey said. “If you have a provider that has a C-section rate of 50-60%, who's saying: ‘Hey, what's going on here?’ If you have a provider who is doing inductions at 37 weeks, what are we doing here?”

Jerrica Wynn, a labor and postpartum doula from Des Moines who has supported more than 70 families through her Jae Cares Doula Services, sees the problems firsthand.

“I tell my clients all the time, doctors have their own agenda. It's like, ‘Hey, let me go ahead and schedule this cesarean, I got vacation next week,” she told the health conference attendees.

Romo hopes doulas will become more of the norm. She said hospitals want to force women to give birth a certain way, but she believes doulas can offer better than “corporate systemized maternal options.” She said hospitals want people lying on their backs to give birth, which is not what the science says, yet mothers face pushback from hospital staff for wanting to explore their options.

“Some of these nurses aren’t comfortable with you saying otherwise,” she said. “They won’t support it, and they’ll probably call you combative.”

Doulas help pregnant people learn how to stand up for themselves in institutions that fail to listen to or respect them — and “not just accept” anything they’re told by medical professionals, some of whom don’t have their best interests at heart, Bailey said.

The grim statistics and anecdotal stories scare Tiffany Adams, who is pregnant and is considering using a doula for the birth of her first child, a daughter.

“I just wonder why,” she said, about the root causes of the disparities during the collective’s Community Baby Shower held in July at Broadlawns Medical Center in Des Moines. “And then it scares me because, at my age, I'm 42, so that is really scary.”

Doula services aren’t yet covered under Medicaid in Iowa, although legislation was proposed in 2023. Some doula services are provided to those who meet certain financial guidelines or live in certain areas, like EveryStep’s doula program and Iowa’s pilot Title V Maternal Health Program, Nelson said. The state program has 21 Black doulas, an analysis shows.

According to the Doula Medicaid Project by the National Health Law Program, Iowa doulas participating in the title pilot program are reimbursed $1,200 for three prenatal visits, presence at labor and delivery and up to three postpartum visits.

Often doulas must work other full-time jobs, said Bailey, executive director of the collective.

What's keeping doulas from expanding is “really political quagmire,” said Amutah-Onukagha, the doctor from Tufts University.

“For now, and until we get a handle on the way that doulas are reimbursed and the way that doulas are paid, doulas are a little bit of a luxury for people that have resources,” Amutah-Onukagha said.

The people who have the resources have tended to be white individuals, CDC data show.

Changing the narrative

Experts said that in addition to possible solutions such as extending Medicaid’s postpartum care period and Medicaid reimbursement for doula care, increasing the number of Black doctors and nurses is needed to help fight the inequities.

The lack of Black providers is a critical issue, said Turner, the Des Moines doctor, during the health conference.

“We really have to start thinking about how are we going to get more African American providers,” Turner said. “We’re going to have to grow our own.”

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