Navigating a Broken System: Addressing Racial Disparities in Birth Outcomes

Editor’s note: This article first appeared in Midwifery Today, Issue 128, Winter 2018.
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I used to believe that birth would be one of the first places where we would achieve equality. Birth is a universal human experience. When it’s kept simple, it can be so basic and elemental. Time itself can seem to fall away around a woman in labor and many of the things that often separate us, such as social norms and conventions, dissolve as well. When a woman is in labor, we are all sisters. I used to believe that, but I was wrong.

In fact, African American women are three to four times as likely to die during pregnancy, birth, or postpartum as other women in the United States. Our statistics for maternal and neonatal mortality are among the worst in the developed world—but they are even worse for women of color.

These disparities in outcome exist even after socioeconomic factors and education levels are taken into account. Black college graduates have, on average, worse birth outcomes than white high school dropouts (Lockhart 2018). Black women who enter pregnancy at an ideal weight fare worse than white mothers who are obese at the time of conception (Lockhart 2018). Black women who seek prenatal care during the first trimester have babies with higher infant mortality rates than white babies whose mothers received no prenatal care (Novoa and Taylor 2018). Perhaps most disturbing, those dismal statistics don’t hold true for African or Caribbean immigrants who give birth within a year or two of arrival in the US, but by the time an immigrant’s daughter grows up here and gives birth, her chances of a negative outcome are the same as for other African American women (Villarosa 2018).

Arline Geronimus, a professor in the University of Michigan’s School of Public Health, has studied disparities in health outcomes for decades. She co-authored the report of a 2010 study—“Do US Black Women Experience Stress-Related Accelerated Biological Aging?”—which found that black women between the ages of 49 and 55 were on average 7.5 years biologically older than white women of the same chronological age, as measured by the length of their telomeres (the caps on the ends of chromosomes). Geronimus writes about the weathering of the human body and spirit that results from long-term stress. This weathering is also referred to as allostatic load—the cumulative physical consequences of chronic stress (Geronimus 2010).

The stress comes from many directions—from harsher discipline in public schools to lower wages for adults, from being followed in a store to being pulled over while driving—but it all results in elevated cortisol and more wear and tear on the body.

The typical black mother in our country enters pregnancy in a more vulnerable state of health than other women. Once her pregnancy is confirmed, she often doesn’t receive the attentive care she deserves from her provider. For a population of women whose possible risk factors should be taken seriously and who should be treated with vigilance and genuine concern, black women are often brushed aside, their concerns minimized or dismissed.

Even money and fame can’t necessarily secure adequate care. Tennis champion Serena Williams, as described in a February 2018 Vogue cover story, had to fight to receive appropriate care after her daughter’s birth the previous fall. Williams had a history of pulmonary embolism and was on an anticoagulant regimen prior to her pregnancy, so when she became short of breath on day one postpartum she knew she needed a CT scan and intravenous heparin. But the nurse on duty assumed that Williams’ other medications had impaired her reasoning and wasn’t going to take action. Williams was persistent and continued to state that what she needed was a CT scan and heparin, even as the medical team performed an unnecessary ultrasound of her legs before finally sending her for the scan that revealed several clots in her lungs. She experienced a string of other post-birth complications that prolonged her recovery but, fortunately, she survived (Haskell 2018).

Photo by Melanie Brown

Shalon Irving did not. Shalon held a double PhD—in sociology and gerontology—from Purdue University, and worked for the Centers for Disease Control and Prevention in Atlanta, focusing on disparities in health outcomes. She had knowledge and connections, but she wasn’t able to get appropriate care when she began to experience postpartum complications in January 2017. Three weeks after her daughter’s birth, Shalon was gaining weight, both her legs were swollen, and her blood pressure was elevated. She collapsed and died from complications caused by high blood pressure in the evening after she had been sent home from an office visit where she had sought advice and treatment (Martin and Montagne 2017).

When National Public Radio (NPR) aired a segment in December of 2017 about the alarming maternal mortality rates for African American women, they spotlighted Shalon’s story. An independent review of her medical records months after her death found that her concerns weren’t taken seriously by multiple practitioners who saw her and that she wasn’t treated with an appropriate level of vigilance given her risk factors—she had a family history of pulmonary embolism, including a brother who had died at the age of 32, and a personal history that included surgery for fibroid tumors and a diagnosis of Factor V Leiden. Her daughter is now being raised by Shalon’s mother, who lives with the knowledge that her daughter’s death might have been prevented had she received more attentive medical care (Martin 2017).

For Shalon Irving, as for hundreds of other African American women who die each year in this country around the time of birth, the origin of the tragedy can be traced to racism. That racism permeates our culture, makes navigating daily life more challenging and stressful for women of color, and then has them seek care from a medical system that is not inclined to value, respect, or even listen to them.

Although these disparities in care and outcome have received heightened media attention in the past year (besides the aforementioned Vogue article and NPR segment, CBS, NBC, CNN, PBS, the New York Times and the Huffington Post have reported on the subject since 2017), the situation itself didn’t begin recently.

“This is not new. This is not a crisis. This has been ongoing in this country for a very long time,” says Jennie Joseph, a British-trained midwife who has worked in central Florida for the past three decades. “Institutionalized racism has always impacted women. What’s killing people is bias.”

Jessica Diggs, a doula, childbirth educator, and student midwife, echoes that. Diggs was part of a trio of birth professionals who organized a February 2017 event in Los Angeles entitled “Birth Disparities: The Anatomy of Prejudice.” That event included a panel of six—two midwives, two physicians, a doula, and a lactation consultant. The six shared stories and personal experiences with the audience, 80% of whom were white, thus starting a conversation within the birth community in Los Angeles. Diggs is proud of the part she played in bringing attention to the issue, but she is also frustrated by the fact that it took so long for those outside her community to pay attention.

Diggs pointed out that the American College of Obstetricians and Gynecologists (ACOG) formally recognized the disparities in outcome in a 2013 publication, asking for a review of “previously unrecognized racial and ethnic disparities in women’s health.” ACOG’s stated reason for examining those disparities now was that “non-white individuals will represent most of the US population by 2050.”

Those disparities were not “previously unrecognized” by Jessica Diggs, or by Jennie Joseph, or by many others. As Diggs said: “[O]nly as we become a ‘majority’ are the issues that have impacted our well-being for decades worthy of urgency. Those issues have been ignored. Simple as that. The fact that it has been ignored is the problem in this country.”

Hakima Payne, co-founder and executive director of Uzazi Village in Kansas City, Missouri, has been aware of the “previously unrecognized” disparities for decades also—as a result of her own lived experiences. She had her first baby at the age of 15. Fifteen years later she was working in labor and delivery at the same hospital where she’d given birth, and one night she was stunned by the realization that nothing had changed. With the thought “Wouldn’t it be great if there was a place black women could go to get humane treatment?” she began sketching out a plan for what would become Uzazi Village.

Uzazi means “birth” in Swahili, and the village strives to make birth a safe and positive experience for black families in the Kansas City area by providing access to comprehensive care and support. Uzazi Village maintains a walk-in breastfeeding clinic, peer-to-peer breastfeeding support groups, a roster of sister doulas, childbirth education, access to midwives, and even Uzazi Closet, which provides free infant and children’s clothing to those in need. They are making progress toward lowering the rates of prematurity and low birthweight babies in Kansas City, and they have made tangible differences in the lives of many families. Hakima Payne attributes those positive outcomes to the energy of a group of dedicated women seeking to “restore the village way of life” as they work from inside the community. The women of Uzazi Village set out to build their own framework rather than to work with the existing dysfunctional system. “We can’t expect the same group that is causing the problem to fix the problem,” says Payne.

Jennie Joseph also sees the brokenness of the current system and has devoted much of her life to establishing an alternative for women in the Orlando area. The Birth Place serves 900 women a year, who receive woman-centered prenatal and postpartum care and choose either the birth center or the hospital for their births, depending on where they are comfortable. Intentionally located in an area that previously had poor statistics for birth outcomes, The Birth Place has been effective in reducing morbidity and mortality for both mothers and babies in the area.

Jennie educates all the women in her care, “preparing mothers of all races, of all backgrounds, to be able to fend for themselves in the hospital environment,” but also realizes how limited her work is in our current culture. “I help them learn how to navigate the hospital and I get the family on board to help, but that’s all I can do. The system is broken and the system isn’t going to change.”

In Austin, Texas, Darline Turner directs Mamas on Bedrest & Beyond, a full-spectrum doula service tailored to meet the needs of high-risk women, especially those on bedrest. (Full spectrum doula service refers to a model of care that brings doula services to people across the spectrum of pregnancy experiences, including abortion, adoption, surrogacy, miscarriage, and stillbirth.) Darline was a high-risk mom herself, and one of her areas of focus is improving birth outcomes for black women in the Austin area. She is also part of the Healing Hands Community Doula Project, which is working to make full-spectrum black doulas available in the Austin area. She looks for practical ways to improve outcome disparities and provides her clients with the tools they need to be self-advocates.

“Black women shouldn’t have to do extra work to get good care. Providers should take the next step and follow up with every woman, but they usually don’t. Women can learn to speak up for themselves. Too often they hold back because they don’t want to be seen as … complainer[s],” says Darline. She instructs her clients to quantify their concerns—doctors take symptoms more seriously when you’ve been tracking them—and to be as specific as possible.

Darline also urges birthworkers to view each of their clients as a multi-faceted individual. Most midwives already do a better job of this kind of holistic care than most physicians do, but Darline cautions that it is easy in our culture to fall into the trap of parceling out our bodies and our care to different specialists. “We really need more attention paid to intersectionality,” says Darline. “Let’s look at each client as a total being and try to put ourselves in her shoes. To do that we have to ask questions. Not in a probing or condescending way, but to get to know her as a person.”

Jennie Joseph also starts by approaching each woman as an individual and accommodating her specific needs. Her JJ Way Model of Care, which is really an amplified version of the Midwifery Model of Care, is based on access and connection, which provide the space for education and empowerment. In Jennie’s model, access means more than simply obtaining an appointment; it means obtaining the time of somebody who will really hear you. Everything else flows from that connection and, woman by woman, Jennie’s approach is making a difference. But she is aware of how limited that difference is within the larger context of a broken system.

Jennie states “If midwives and doulas want to really have an impact, we can provide personal care and stress-free prenatal visits, and that helps a few women. But then we learn about the disparities in outcome and want to do more, so we push to have more women of color in practice. Okay, that’s great. But if we’re really interested in lives being saved, we need to ask ourselves: After all these years, how did we get here in the first place?”

Many birthworkers like Jennie Joseph, the women of Uzazi Village, and Darline Turner are embedded in their communities and doing the daily work of providing care to vulnerable families. Birth by birth, they are making a difference. But what else needs to change?

If we want to reach all the women who live within our nation’s borders we might start with honesty. In Jennie Joseph’s words, “We must be willing to acknowledge the problem, stop pretending, and start getting real with ourselves. We have to look at what is really needed and tell the truth.” Darline Turner points out that “We have to understand that everybody is part of the problem. We, as a culture, have to admit and address that, as we ask questions like, ‘How is it that developing nations have better birth outcomes than we do?’”

California doula Jessica Diggs would challenge all of those who work with birthing women—even those who seldom cross paths with women of color—to examine their thoughts and responsibilities regarding this issue. “You cannot consider yourself a midwife, a supporter of women, and a keeper of birth, if you pretend that this situation doesn’t affect all of us.”

When birthing women are consistently offered inadequate care that doesn’t meet their needs, and sometimes even kills them, it affects all of us. Working directly with this particular vulnerable community isn’t everyone’s calling, but all of us can support the people who are doing the work. When we do, perhaps the sacred space of birth might yet be one of the first places where we achieve equality.

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About Author: Mary Ann Lieser

Mary Ann Lieser is a freelance writer and doula, and sells used books in Wooster, Ohio. She is the mother of eight homebirthed children.

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