This is part one of a three part series and excerpt from the new book, Battling Over Birth: Black Women and the Maternal Health Care Crisis.

Part One: Prenatal Care Barriers

Part Two: Stress, Pregnancy and the “Strong Black Woman” Syndrome

Part Three: Midwifery Model of Care

“Battling Over Birth is a critical and timely resource for understanding black women’s birthing experiences in the United States, a country where black women’s lives—and the lives they create—are at much greater risk of death and injury than those of non-black women … By distilling the common and diverse threads from over 100 black women, the BWBJ researchers have woven a multi-faceted tapestry that reflects what black women view as important and central to optimal birth experiences. Their recommendations for improving care and outcomes are grounded in black women’s authoritative knowledge. …This wonderful, important, necessary research by and for black women points in the direction that black women think we should go to ensure they have safe, healthy, and satisfying birth experiences and outcomes. We need to listen and act.”

—Christine Morton, PhD, author, Birth Ambassadors: Doulas and the Re-Emergence of Woman-Supported Birth in America

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Battling Over Birth: Prenatal Care Barriers

Part One

Experiences of Prenatal Care

Despite media images and popular beliefs to the contrary, pregnancy is not a medical condition and childbirth is not a medical emergency. Nevertheless, prenatal care is a critically important element in ensuring that pregnant people and their infants are as safe and healthy as possible. Relevant prenatal care can be effective in reducing preterm birth and high-risk pregnancy complications.¹ Black women are more likely to go into labor before 37 weeks, and to give birth to infants who weigh below the low birthweight threshold of 5 pounds, 8 ounces.² Since premature and low birth weight infants are at greater risk of dying, access to good quality prenatal care can be a matter of life and death. Prenatal care can also be instrumental in identifying any health concerns that may impact the mother’s physical wellbeing, including high blood pressure, which could be an indication of pre-eclampsia, or gestational diabetes. Studies have shown that maternal mortality rates are lowest for women who started prenatal care in their first trimester, and highest for those with little or no prenatal care.³

Despite the disparities regarding black infant and maternal mortality and morbidity (illness), it is important to note that most black pregnant individuals experience normal, healthy pregnancies that do not require any medical interventions. Nevertheless, all pregnant people can benefit from effective prenatal care that provides emotional reassurance and practical advice during an emotionally and physically vulnerable time.

Previous studies have found that African American women are less likely to receive adequate and timely prenatal care than white women.⁴ The women in our study reported a number of barriers to accessing, and persisting with prenatal care. These included: lack of or inadequate health insurance coverage, distrust of and poor treatment by prenatal care providers, and culturally inappropriate care.

Barriers to Prenatal Care: Health Insurance

Prior to the 2010 Affordable Care Act (ACA, also known as ObamaCare), women routinely paid more than men for the same health insurance coverage, 90 percent of individual health plans failed to provide maternity benefits, and in all but five states, being pregnant was a pre-existing condition that prevented a person from purchasing health insurance.⁵ Several of our participants gave birth prior to the creation of the Health Insurance Marketplace. Rashida⁶ moved to the Bay Area during her pregnancy. She shared how the pre-existing condition clause impacted her efforts to find a local caregiver:

I’ve had prenatal care since I was five weeks, but I don’t know who’s delivering my baby, my insurance in Baltimore city stops in August, the doctor I go to doesn’t accept state issued insurance, nobody will take me after seven months, so I don’t know how I’m delivering her, I don’t know how this is gonna work. I’m very much an always take care of my business type of person, and then it just so happens, I’m about to have a baby, and everything falls apart. — Rashida, home birth, vaginal birth ⁷

The Affordable Care Act was designed to ensure that healthcare is affordable, universally available and non-discriminatory. The ACA has provided access to health insurance to an additional 7.7 million women in the U.S.⁸ A number of women who participated in our study were uninsured or underinsured in relation to pregnancy and childbirth. Nine percent of the women in our study reported that they did not have health insurance that covered their prenatal care and childbirth. An additional two percent reported that their health coverage was inadequate or was terminated during their pregnancy.

However, since our research took place between 2011-2016, and the Affordable Care Act extended insurance coverage during this time, it is to be hoped that the number of black women in California accessing health-care has improved. However, media stories indicate that the ACA is leaving some pregnant women paying out-of-pocket for prenatal care and delivery, or going without care.⁹  Our research suggests that more data is needed to determine whether black pregnant women are falling between the cracks of the new health-care system. One participant identified a dilemma facing women in low-to-middle-income families–she was unable to afford a private plan, but earned too much to qualify for Medi-Cal or receive assistance from free
health programs:

We moved to California and being a person with preexisting condition, health insurance is extremely traumatizing to me as well. I’ve had bouts in my life where I haven’t had health insurance and I’ve run out of supplies. It’s just scary to know that my country doesn’t care about me. I’m not a criminal. I’ve never been arrested. I’ve never been on welfare. I’ve never used any type of government assistance. I’ve worked since I was 15 years old. I have a Master’s degree. And I just felt like my country could give a shit.  It’s like, die, who cares about you. And I’ve always felt that way. It just makes me really sad to think no one cares… [O]nce I found out that we were pregnant, people were like, “Go to Lifelong, go to Planned Parenthood, go to West Oakland Health Center, go here, go here, they’ll help you.”  I went to all of those places and they were all like, “You’re not poor enough.” I was like, “I have a three year old, I’m diabetic, I’m pregnant, I need help.” They were like, “You’re not poor enough.” Once again, I just felt like a big F U. I’m a high-risk pregnancy. Anything can be going on inside my body right now. I need to go to a doctor. “Nope. Sorry.” Regina, 32, hospital, planned cesarean birth

Denying pregnant people access to prenatal care–care that in some instances can be life-saving–is a human rights violation that infringes Article 3 of the UDHR. Clearly more work is required to ensure that black women, alongside all pregnant people of color and low- and middle-income people receive universal access to prenatal care regardless of their economic status.

Barriers to Prenatal Care: Relationships with Medical Practitioners

A second barrier to receiving adequate prenatal care involved relationships with prenatal care providers that were characterized by lack of rapport, respect and trust. Where lack of health insurance is a barrier to accessing prenatal care, conflictual or poor relationships with medical practitioners can be a significant barrier to persistence with prenatal care beyond the first few visits. In addition, women who receive care that they perceive as disrespectful or discriminatory for a first pregnancy, are more likely to avoid prenatal care in future pregnancies.

In some instances, participants attended one or two prenatal visits and then decided that the experience was stressful and counter-productive for their emotional and physical wellbeing. In other cases, participants continued to attend out of a sense that this is what they “should” do, but were extremely unhappy with the care they received.

I actually broke up with her [my ob-gyn] very early in my pregnancy because I had some sort of, I don’t know if it was an infection, and I was in her office and she was saying what she thought I should do and I was saying what I thought I should do, and I wanted to try a more natural remedy, and I could see the look on her face. She said, “Ok I’m going to step out.” She stepped out of the room, I’m not even dressed and I’m not even clear if she was coming back. I sat in there probably 15 minutes and I was cold and I thought, I don’t know if she’s coming back, or if she’s pissed because I’m not doing what she wants… It was just a glimmer of who she might be as a care provider. So I left crying and I thought I’ve got to find somebody else. Cindy, 35, hospital, vaginal birth, VBAC

So even just walking into the hospital, I’d be, oh my God here we go. I have to deal with this foolishness. It was just to the point where they [the nurses] would have conversations over my head while they’re taking my blood pressure, about what’s going on this weekend. And I’m like, I don’t want to hear none of this. So I think I already would come in with a lot of attitude, and so I just hated coming to my prenatal appointments. Theresa, 42, birth center, vaginal birth

Young mothers, especially those in their teens were particularly at risk of having their autonomy stripped by medical practitioners, who tended to view them as lacking in the ability to make healthy, responsible decisions:

Prenatal care was the worst though. That was my worst experience… I coulda had all kinda medical problems and would have never known. And at that point I didn’t care, because I’m like: you are not going to violate me every time I come to this hospital, and tell me how you feel about my situation, my decisions and my body. That’s what would happen. So I stopped going… And it’s still happening to this day. I heard women do the same thing, say: “I’m not going to get prenatal care.” There could be a lot of serious issues going on with your baby, you would never know. And I didn’t care, I was like, God gonna bless me, I’m gonna pray, cause I’m not getting treated [like that]. With my fourth son I think I went in two times to the doctor with him. Because I felt like I love me more than they love me. I’m gonna look our for my baby versus these people touching me, saying they checking on us. So it was a hard road being a teen mom. Zanthia (see my story Zanthia)

A frequently expressed concern among women who received prenatal care with an ob-gyn was the belief that their physician did not support their vision for their birth. This was most commonly evidenced in lack of support for their desire to have a vaginal birth:

[M]y gynecologist at the time, he would bring up things that would bring up a weird energy in me. So then I said, let me start looking into some things. Cause almost every conversation I would have with him, from the time they confirmed I was pregnant was, you know, it ended up in a C-section. Every single conversation. And I would try and turn it around. You know, he’s a family doctor, he’s been in our family for years, so I would talk to my mom and she would say, well just talk to him. Every conversation, we still ended talking about a C-section. So I just stopped going to the appointments. Jordan, 31, hospital, vaginal birth

One of the participants described her experience of attending a prenatal visit for a scheduled external cephalic version–an attempt to turn her baby that was in breech presentation (feet first). Like Jordan above, she was convinced that the physician had very little interest in avoiding a cesarean birth. She was also alienated by his tone and affect toward her:

[S]o I got up there and the doctor, this white man who I’ve never met before in my life… I was just so scared and I hear the woman who is next door to me who is an African American woman. And he’s like, “Hey, how you doing? So this is your second pregnancy?” “Yeah.” “Oh so your baby’s breech?” “Yeah” I mean this is literally the time in between as he’s talking to her.

And he’s like, “Okay let’s give it a try…Nope, didn’t work. Let’s give it another try…Nope didn’t work. Okay Mrs. Thomas, so I’m going to set you up for a C-section on du-du-du-du- da,” gave her the appointment, she was out the door. And I’m listening, looking at my partner like, “Do you hear what he’s doing next door? That is not going to happen to us.” So then he comes next door into our room, our little room separated by the curtain and he’s like, “Oh, she didn’t take the medicine?” And he was like, “Oh fine, well that’s her choice.” He was just really rude. And so he literally just places his hands on my womb and I just got so tense, I just froze, you know. He’s like, “And it didn’t work.” And then it was time number two for him to try and I just had thought “Okay if this doesn’t work, I’m going to be in here for a C-section,” you know. And so I just surrendered. And he turned my baby around. Zaria, 34, home birth, vaginal birth

Medical practitioners often work under difficult conditions that are not conducive to excellent service provision. Some of the participants recognized that there were structural barriers that prevented their ob-gyn or nurse practitioner from providing a more caring, informative and attentive service. The three key structural barriers were:

HMO model of care, which requires fast turnover of large numbers of patients, resulting in ten-minute appointments with busy and sometimes distracted medical staff.

the staff rotation system, whereby the pregnant person sees whoever is on rotation that day, rather than receiving consistent care from a medical professional who can get to know her.

institutional budget constraints resulting in inadequate services for people attending appointments:

I didn’t really have any specific doctor. It was a whole bunch of white ladies… My whole pregnancy, it was hella hot, they never had no snacks for me coming up in that hospital. I was hella pregnant and hungry. I was tired, I was wearing flats, my feet were swollen. There was no comfortable chair, the environment was, you were like, “This place’s kinda low budget.” Nadia, 22, hospital, vaginal birth

I started out going to see an ob-gyn at [HMO]… [A]ll of the good doctors were busy so I just ended up seeing this random woman, and she was pleasant and everything but the visits were 10 minutes. “So who are you?” No rapport whatsoever, so I think about two visits in I was like, “No, I’m not doing this, it’s not worth it.” Aliyah, 21, home birth, vaginal birth

Black women seeking prenatal care are impacted by interlocking systems of race, class, gender and age. Low-income black women often attend clinics and public hospitals that suffer from underfunding and understaffing. As black women, they enter a medical system from which historically, black people have been denied access, or incorporated as subjects of medical experimentation so that white patients could benefit. This toxic legacy of racism is described by Harriet Washington as “medical apartheid,” leading to ‘black iatrophobia”, fear and mistrust of (white) doctors by black people rooted in mistreatment and exploitation. In the context of the Sharing Circle with other black women, many of the participants felt no need to explain these feelings of mistrust and alienation; simply referring to a “white man” or “bunch of white ladies” indicated the social distance between them. One of the participants, whose relationship to race was more complex than some of the other participants due to her biracial identity, articulated the way in which societal racism and previous experiences of discrimination can impact the relationship with a white practitioner:

“Just so you know, like race and racism, those are big issues in my world being a person of color; I’m a black woman. I did come from a white mother, but I’m a black woman [laughs]. So there’s things that I see that white folks do that can really rub me the wrong way… so it was a big step for me to embrace her [white midwife]. Kara, hospital, unplanned cesarean birth

The following section explores how lack of cultural humility can exacerbate mistrust by black women of white medical practitioners and other nonblack care providers.

Barriers to Prenatal Care: Lack of Cultural Humility by Providers

A third barrier to accessing and persisting with prenatal care is a lack of cultural humility.¹⁰ In a context where behaviors and choices shaped by a Euro-American worldview and cultural context are viewed as appropriate, rationale and responsible, black women are vulnerable to judgment, shaming and coercion by well-meaning medical professionals who are unaware of their own implicit biases.

A site of significant stress and conflict between medical professionals and participants in the study was diet, nutrition and body weight. Prenatal care providers are concerned about women categorized as overweight and obese because these women have a higher risk of maternal mortality and morbidity. They are also concerned about diet and nutrition because of the disproportionate African American babies that are born with low birthweight. In contrast, advocates for big women, known as “fat activists,” argue that labeling and judging big women creates stigma and shaming that is counterproductive to efforts to create healthful, nonjudgmental and supportive environments for these women.¹¹ In addition, black feminist scholars have identified the racial and cultural bias behind ideas about normative and ideal body types, including “boylike,” slim-waisted and -hipped woman.¹² In black communities, alternative ideas of beauty and different body ideals exist, leading to a greater acceptance and celebration of roundness and curves, and an appreciation for “thick” women. At the same time, in sharp contrast to the controlling image of black women consuming large amounts of fried soul food, many black women eat “natural,” wholefood diets, including vegetarian or vegan diets and avoid American staples like burgers and processed bread as part of a natural, Afrocentric lifestyle.

Nadia, a big and young woman, experienced her prenatal care provider’s constant exhortations to eat less or to consume different foods as Eurocentric and blaming:

It was a good hospital, but the medical industry just like a lot of industries in America, it’s very white. You gotta accept that and roll with it. It’s very awkward, being a woman of color, being that my stature is so large, I’m a big woman. There’s nobody in that room who could be, “I feel you.” [I relate to you] Or they’re like, “What are you eating throughout your pregnancy?” And I’m like, “This is what we eat.” And they’re like, “Oh that’s not healthy.” Or, “Oh you’re gaining too much weight.” Where in reality, the medical standards are very off and not culturally relevant. Nadia, 22, hospital, vaginal birth

Regina, a big woman who was pregnant with twins, experienced her prenatal care provider’s scrutiny of her diet and lack of weight gain as oppressive and judgmental:

When I’d go into the doctor and they would call me and ask me what have I been eating, I just felt so judged. They’re like, “You’re not eating enough, you’re not eating enough. You have two babies; you need to eat way more than a normal pregnancy. You need to eat more.” You’re telling me I need to eat more and I’m not gaining enough weight, but I’m a big girl. In my head it was hard to be like, eat more. I’ve never been told to eat more. Usually I’m told to lose weight. It was a really hard thing for me to understand. I wasn’t hungry. I felt like I was eating enough for myself. I wasn’t hungry, I didn’t feel like I was weak or tired. I was still working. But I wasn’t gaining enough weight. I feel like I wasn’t getting those A’s. Regina, 32, hospital, planned cesarean birth

Similarly, Hannah who was seeing a nutritionist due to being categorized as underweight early in her pregnancy felt that she was judged for not eating a diet that conformed to Euro-American norms:

Amara:  Yeah they are quite judgmental too.  I remember my nutritionist she tried to be really, really nice, but she basically… She had me write everything down I ate for about a week and bring it in and all. She looks and she said you basically don’t eat anything, do you?  I am like, that made no sense to me.  I mean what she meant was because I am a vegetarian, I eat a lot of tofu, brown rice, vegetables, you know.  But I mean I eat stuff, obviously. I have been around for forty years, I have probably eaten, you know?  Yeah and she was like, “You know you have to double your caloric intake,” or something like that.  But she should’ve just said [puts on gentle voice] “We want you to double your calories.” Instead she said. “You really don’t eat anything!”

BWBJ:  You mean the American diet where everything is super-sized?

Amara:  Right.

Hannah:  Why don’t you go to McDonald’s?

Amara:  Right, exactly.  [Everyone laughing.]  That’s what she was looking for.  What, there are no french fries?

Amara 41, hospital, vaginal birth; Hannah, 29, hospital, unplanned cesarean birth

It is generally assumed that women who have a high commitment to health and self-care are more likely to attend prenatal appointments, and to follow the suggestions they receive from health-care providers. In contrast, for some of the women in the study, removing themselves from “care” that they experienced as stressful, blaming, violating or disrespectful was an act of self-care and love for their unborn child. As Zanthia above states, “I love me more than they love me. I’m gonna look out for my baby.” While this is a logical response to “care” that actually creates more stress for the pregnant person, it also has significant risks in the infrequent cases in which women or their infants experience a health crisis (see My Story: Zanthia). When women report that they are avoiding prenatal care despite health-care coverage that makes it affordable for them, it may be tempting to label them as irresponsible and to blame them for any negative consequences. However, this study has demonstrated that for some women, avoiding prenatal care is a rational response to inadequate and stressful care by providers who they experience as cold, disinterested, disrespectful or Eurocentric. If black women’s pregnancy experiences and outcomes are to improve, it is essential that medical professionals are trained to provide care that is affirming, empowering and culturally relevant.

MY STORY: Zanthia¹³

Zanthia is a working class African American woman, doula, parenting educator and mother of eight children, four of whom she birthed before she was 20 years old. She has experienced prenatal care in Oakland, CA, over a two decade period, and feels emotionally scarred by many of those experiences:

I got a lot of negative experiences at the hospital, being a teen mom. Prenatal care was the worst though. That was my worst experience. That’s what I said. I coulda had all kinda medical problems and would have never know. And at that point I didn’t care, because I’m like, you are not going to violate me every time I come to this hospital. And tell me how you feel about my situation, my decisions and my body. That’s what would happen. So I stopped going. Because I was in teen mother classes all through high school, they told me when I got in 12th grade, you can’t go no more, cause you could teach the class. I was pregnant all the time. Even with all that experience and knowing about my body, I never had respect as a mother going to the hospital wanting to get care.

And my friends, because I went to class with them, they had the same experience. When they went to prenatal care, very few of them had doctors that would explain things to them about their bodies, or talk about they had choices. It was always getting told what to do. I seen them get late term abortions because these doctors felt that you don’t need to be having a baby, and they would convince their parents to do this. And I seen them. I would talk to my peers about this so I knew it wasn’t just my experience going to the hospital being treated like this…

Well, after my first one at 14, I stopped going to prenatal visits regularly. Because of how I’d get treated when I go. The prenatal visits were scary. They would talk about me. And even though I had my eighth one and I was 40, I still got treated [badly], cause people thought I was younger. They wouldn’t look at my age. I’ve had nurses literally come back and forth giving me birth control, not even the kind I’m scheduled for but offering me what they thinking. I had to file a complaint on her because I felt invaded because I’m not a teenager no more. And I have post-traumatic stress disorder because of that. Seriously. I didn’t get prenatal care with my second, third, fourth. The only reason I got it with the fifth was ‘cause… I wanted to see the ultrasound. Then the sixth and the seventh I kind of went, but if I felt any of that type of [disrespect]… I had doctors telling me to go ahead and get an abortion. Just go ahead and get an abortion. I mean recently. When I had my fourth one. So this was not light years ago.

During my pregnancy with my eighth child, I noticed that I had some unusual swelling and went to my ob-gyn to get it checked out. I had a black doctor at [HMO], I went in to see her. She said, “Your blood pressure’s too high. I’m not seeing you.” I was like, “Huh? You’re not goin’ to see me? And she was like, you have to take these pills and that’s the only way I’ll see you… So I felt offended. I felt like, I’d had kids since I was 14 so I had been abused a lot by hospitals in all different kind of ways with birthing my children. So for me to go in there and a black woman to tell me, you’re not going to help me because my blood pressure’s high and I’m high risk and you’re not going to have a dead woman and baby…So she referred me to the high-risk clinic. And I got a Caucasian man that was my doctor and he was like, “You done had 8.” This was my eighth baby. So he was like, “You tell me.” And we worked pretty good. He didn’t put me on the medication, because that was my concern and I was trying to talk to her about it and she said she wouldn’t see me unless I got on the medication. And I was like; mmm I want some alternatives here.

At 27 weeks pregnant, I went to the hospital ‘cause I was swollen and couldn’t breathe. The doctors found two litres of fluid on my lungs. I was drowning in my own fluid… if I’d stayed home a couple more days, I’d have been dead at home. So I had an emergency C-section; my little girl weighed a mere two pounds, two ounces. During the coming weeks my daughter stayed in an incubator in the NICU. One day, they came out and told me she had stopped breathing. I never saw any of my kids not breathing. And to have a child not breathing, that was like; Wow. Not my baby. All my babies breathe. On top of that I couldn’t trust the doctors and nurses that were supposed to care for my baby, because of what I’d been through. You got to be careful who care for your kids and I knew that. Just cause people have those positions don’t mean that they’re safe healthy people that have good intentions cause they’re nurses or doctors. I knew that though. So it was traumatic. I had to see a therapist. I had to do a lot of intense stuff to leave my baby there. Cause I didn’t feel safe and I didn’t feel she was safe leaving her there.

My baby got better and eventually I took her home, but it was really, really traumatic for me. So I’m thankful that we’re doing this [Sharing Circle] and to be part of this [research]. Cause I’ve had some cruel things and being a teen mom a lot of the times happen during my birth. And I can related to so many people’s stories of the unfair things and the cruelty that happens during childbirth. And that if we can’t get support around it… they don’t look so beautiful any more, they don’t bring the joy, cause I gotta be loved first before I can give it to somebody else.

 

This is part one of a three part series and excerpt from the new book, Battling Over Birth: Black Women and the Maternal Health Care Crisis.

Part One: Prenatal Care Barriers

Part Two: Stress, Pregnancy and the “Strong Black Woman” Syndrome

Part Three: Midwifery Model of Care

 

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