Danielle Jackson | Longreads | June 2018 |3370 words (14 minutes)
“It’s in fashion to talk about black women’s maternal care,” Bilen Berhanu, a Brooklyn-based full-spectrum birth doula told me recently. I’d asked her about the outpouring of news stories, from multiple national outlets, about infant and maternal mortality over the past twelve months.
The reporting has added flesh and aching detail to what I’ve come to think of as an embarrassing public health crisis in the United States. Among industrialized countries, our nation has the highest rate of infant deaths. We’ve had dramatic declines since 1960, but we have not kept pace with other nations we’d consider peers. New American moms face similar danger: The rate of maternal mortality in the U.S. has been rising since 2000 while falling for most other nations in our subset.
Deep, persistent inequality — access to safe neighborhoods and hospitals, functioning schools, healthy food — plays a part. But across family income levels and educational attainment, the infant mortality rate for black babies is more than twice than it is for whites, according to data from 2007-2013. Black mothers are also more imperiled than white ones — they are three to four times more likely to die from pregnancy-related causes leading up to or within a year after giving birth. In New York City, black mothers are 12 times more likely to die than their white counterparts.
ProPublica and NPR’s multi-part “Lost Mothers” series launched on July 17, 2017, with an investigation into what happened to the 700 to 900 U.S. women who died of childbirth-related causes in 2016. Our country has no central mechanism for reviewing or counting these deaths. In the U.K., a nation with a quarter of our population and less than 20 percent of the number of women giving birth, every maternal death is reviewed by healthcare practitioners “as part of a national inquiry,” according to another ProPublica study, this time on maternal health data collection. In recent years Congress has introduced bills to address this lack of data, but historically, it has stalled before coming to vote in either chamber. ProPublica estimates about half of all states and only a few cities currently have review boards in place. The role of the boards’ members is to sift through death certificates and medical records and recommend actions and protocols that improve maternal outcomes. Some of these existing boards are volunteer-based and lack access to enough funding to create action from their findings.
Though necessary and consciousness-raising, the news stories have been scary for me as a black woman who still very much wants to have children but is nearing the end of my fertility. Especially the reports on individual women. “Lost Mothers” reporters Nina Montague and Renee Martin wrote poignantly about Shalon Irvin, a black, 36-year-old epidemiologist at the Centers for Disease Control and Planning, who died three weeks after giving birth to her first child. “Even Shalon’s many advantages — her B.A. in sociology, her two master’s degrees and dual-subject Ph.D., her gold-plated insurance and rock-solid support system — had not been enough to ensure her survival.” Irving was advanced maternal age. She’d been overweight at various times of her life, and she suffered anxiety, uterine fibroids and had an inherited condition that made her blood prone to clotting. She should have been treated as high risk, with more attention given to her vulnerabilities. According to Martin and Montague, review of her medical records from the postpartum period revealed multiple missed opportunities for appropriate treatment.
In late December 2017, less than a month after the report on Irvin, Erica Garner died. She’d become an outspoken activist after her father, Eric, was killed by a New York City police offer in 2014. Erica was only 27 when she had an asthma attack that lead to a heart attack, and she’d given birth to a son only four months before.
Two weeks later, on January 10, Vogue published a profile of Serena Williams in which she detailed her own nearly tragic post-partum experience; she suffered a pulmonary embolism (blood clots in her lungs) and difficulties with her caesarean wound. It was her ability to advocate for herself that saved her life:
She walked out of the hospital room so her mother wouldn’t worry and told the nearest nurse, between gasps, that she needed a CT scan with contrast and IV heparin (a blood thinner) right away. The nurse thought her pain medicine might be making her confused. But Serena insisted, and soon enough a doctor was performing an ultrasound of her legs. “I was like, a Doppler? I told you, I need a CT scan and a heparin drip,” she remembers telling the team. The ultrasound revealed nothing, so they sent her for the CT, and sure enough, several small blood clots had settled in her lungs. Minutes later she was on the drip. “I was like, listen to Dr. Williams!”
Williams’ story punctuated the finding that disparities in care persist for black women despite income or education. As one of Shalon Irvin’s friends told ProPublica, “You can’t educate your way out of this problem. You can’t health-care-access your way out of this problem.”
It was March when a close friend with a preschool-age son announced her second pregnancy to me. The same month, another was hospitalized multiple times and endured two surgeries after a miscarriage. Linda Villarosa’s feature in the Times’ Magazine, “Why America’s Black Mothers and Babies are in a Life or Death Crisis,” published on April 11, 2018. Accompanied by beautiful, soft photographs by LaToya Ruby Frazier, Villarosa tells the story of Simone Landrum, a New Orleans mother of two, as she gives birth to a new baby in the aftermath of a stillbirth and an abusive relationship.
Villarosa tells us it is the “lived experience” of black women in America that makes pregnancy more daunting for us. The “toxic physiological stress of racism,” she says, in part due to the accumulation of slights throughout a lifetime, wears on the body. The healthcare system is another source of stress. Healthcare providers are most often white and have been known to treat patients of color with contempt, ignore their concerns, and undertreat their pain. Landrum’s birth doula, Latona Giwa, also a woman of color, stands in the gap for her, acting as a buffer between the doctors and nurses who speak to Landrum brusquely.
Villarosa’s is one of few pieces that mentions with any detail the interventions of doulas, the professionally-trained workers who assist expectant mothers before, during, and after labor. To me, it feels like the expertise of birth workers who’ve been on the front lines of caring for the reproductive health of black women for some time now has been drowned out by news of the proportion and reach of the tragedy. I wonder what doulas think of the coverage. Have their practices changed? Do they feel hope? Is the information useful? Bilen Berhanu says the reports are generally informative but offer “nothing new.” The conversations among black doulas and midwives are “much deeper,” she continues, with constant probing into “how to scale and replicate models like [community-based doula organizations] Ancient Song, or By My Side, and how to repair something as endemic as systemic racism.”
Villarosa cites a recent study conducted by the nonprofit research group Cochrane which found women who receive “continuous one-to-one intrapartum (the period of childbirth) support” had “increased spontaneous vaginal birth, shorter duration of labor, and decreased cesarean birth,” as well as fewer “negative feelings about childbirth experiences.” Cesarean sections are important emergency surgical procedures that can be lifesaving, but some experts think they’re overused. They’re also associated with higher rates of maternal mortality.
The Business of Being Born, Ricki Lake’s documentary from 2008, looked at several birthing models — in hospitals, with a midwife at home, and combinations of the two. The documentary took a stance against the view of childbirth as inherently pathological and emphasized the intuitive power of a woman’s body and the normalcy of birth. It questioned hospitals’ tendency towards fast treatment: the rush to induce with drugs, the mistrust of intervening supporters like birth workers who raise questions, the unwillingness to let mothers move around freely during labor.
All but one of the mothers depicted in The Business of Being Born were white. Still, what’s useful about the film is its implication that pharmaceutical companies, insurance providers, and litigators have made the experience of birthing within the American healthcare system a challenging minefield to navigate. “When ‘The Business of Being Born’ came out,” doula Annette Perel, who also practices in New York, says, “it started a lot of conversations about childbirth in hospitals. One of the main changes was that women didn’t know that they had a choice in care providers [or methods]. Midwives as an alternate option to an OB or the choice of having a home birth or a birthing center in the hospital or free-standing birthing centers.”
Denise Bolds, northeastern U.S. regional director of DONA International, the first worldwide doula certification organization, says that since Lake’s documentary, doula support during childbirth has become “white women’s best-kept secret.” Doula care can be expensive; I’ve seen price quotes nearing $5,000. “Even to be aware that she has so many choices for her childbirth experience,” is a luxury some women have that others don’t, Bolds told me. She has a varied practice that includes supporting women and their partners when trying to conceive, prenatal care and planning, labor support across a variety of settings, post-partum care and lactation counseling. She works with families with different income considerations and allows payment plans.
Bolds is 54, and she was born in New York City. Growing up, she spent summers with her grandmother, a folk healer, along the South Carolina coast. She became a doula after years as a social worker. She says a traumatic birth experience with her son and three miscarriages make her more effective at what she does, and she wishes that women who need the care and support of doulas most — namely, black women — were more informed about their choices and the dangers of cesarean sections. Still, the recent news coverage on black maternal health has not made her feel hopeful. She doesn’t like that many stories have a stressful, “doom and gloom” quality (CNN ran a piece with a headline that read, crudely, “Childbirth is Killing Black Women.”) Bolds also worries that our capitalistic impulses will interfere with this new wave of awareness.
Organizations like Ancient Song Doula Services in Brooklyn, founded by Chanel Porchia-Albert and By My Side Birth Support Program, a federally-funded program in partnership with the NYC Department of Health and Mental Hygiene, make doula support accessible to New York area women of color as well as white women who could not otherwise afford it. Ancient Song offers affordable training for women who want to work in birth support, and they do not turn expectant mothers away based on an inability to pay full price. By My Side has an income cap, so their services are focused on families with low earnings. One doula I spoke to has experience with both organizations. When I asked her about the influx of news stories on black mothers, she said she wonders about the motivations of the editorial outlets involved, and whether the policy responses the pieces engender would somehow “downplay” the racism baked into our healthcare system.
On April 17, a statue of Dr. James Marion Sims, the “Father of Gynecology,” was removed from the northeast perimeter of Central Park, across the street from the National Academy of Medicine. Sims invented the speculum. He also developed surgical practices to repair vesico-vaginal fistulae (a tear of vaginal and anal tissue that could occur during difficult childbirth) that are still used today. He made his name in 1852 when he published “On the Treatment of Vesico-Vaginal Fistula” in the American Journal of Medical Sciences after five years of experimentation on enslaved women in a “backyard” hospital he built in Montgomery, Alabama.
Anarcha, his first enslaved patient, was 17 years old when she came under his care. He also worked on Betsey and Lucy, both suffering from fistulae, after leasing them from their owners, as well as about half a dozen other enslaved women. He wasn’t successful in curing the patients in his first two years of trying, and his medical assistants and apprentices abandoned him. Sims then trained his enslaved patients as surgical nurses. Medical Bondage, by scholar Deirdre Cooper Owens, about the foundations of American gynecology, says Sims “created a rotational work and healing shift for his slave patients; while some women recuperated from surgery, the others labored on his slave farm, in his home, and in the hospital.”
Cooper Owens takes great care to place Sims in context. He was one of many early doctors and surgeons who contributed to the rapid innovation and professionalization of gynecology. Ephraim McDowell, who pioneered the practice of ovariotomy, in Kentucky, also conducted experimental surgical procedures on black women. In Virginia, John Peter Mettauer performed experimental surgeries on a 21-year-old enslaved woman multiple times over four years that led to the creation of lead sutures which helped Sims’ fistulae operations become successful.
Despite the advances in obstetrics and gynecology in 19th-century America, most deliveries still took place at home. But by the 1950s, most births happened at the hospital. The shift was a result of the professionalization of ob-gyns, the formulation of an idea that pregnancy was a condition in need of medical intervention, and a smear campaign against the mostly female, and in the South, black, birth workers — the nurses, “granny midwives,” and other healers — who’d attended births for white and black women alike up until then.
Cooper Owens suggests that if Sims is the “Father of Gynecology,” his surgical nurses and patients are its mothers. Black women in bondage and beyond found ways and made spaces to assert their wills, to attend to each other, to develop knowledge and skill. It’s a mistake to ignore or understate this when telling stories about the origins of American gynecology, or when dreaming up new ways to address the disparities we face today.
On April 22, no doubt in part a result of the upswing in news coverage, New York Governor Andrew Cuomo’s office announced a series of multi-agency initiatives to address the state’s disparities in maternal and infant care. The plans included the creation of a maternal health taskforce and a maternal mortality review board; launching a best practices summit to “address statistics, best practices, community awareness and medical school curricula”; continuing education programs for some practitioners; and expanding a collaboration with NYS hospitals that focuses on hemorrhaging protocols.
The governor’s office also announced a pilot program that would allow Medicaid to cover doula support, and said it would launch in 45 days. Oregon and Minnesota already allow Medicaid reimbursements for doula care. The doulas I spoke to had a range of responses to the pilot — from cautious optimism to a sense of wary suspicion that it will not reach more women. There is also fear it could make things worse.
“It needs to be community-based, based in grassroots efforts” that already exist, said Bilen Berhanu. Some were worried that the program, which will introduce a certification process for doulas to get paid, will not offer, in the words of Annette Perel, “a true living wage.” As it stands, doula care is not covered by most insurance plans, and many doulas who provide support for high-risk mothers cannot get by on birth work alone. Others worry: What will the certification process entail? Will doulas whose practices are based in the communities with the most need be able to afford it? In other words, will black and brown doulas be displaced?
Also, would the nature of the work itself change? Doulas work on behalf of the mother and are trained to not adhere to any method or modality of care. Would the Cuomo program mean they are employees of the state, or of hospitals, or any other institution?
The maternal health task force is another area of concern. Amid a host of lawmakers, academics and ob-gyns, a single midwife is listed as a member, and there are no doulas or recognizable names of leaders of grassroots reproductive justice organizations. My fear is the creation of a new system that repeats the same mistakes of the old one. Not listening to or valuing the experiences and expertise of the black and brown birth workers who already tend to the needs of high-risk women and communities would signal, to me, that the whole effort will be doomed to failure.
Jill Montag of the NYS Department of Health emailed me the following statement on May 30, when I ask about the composition of the task force and the development of the doula pilot program:
Reducing maternal mortality across New York State is a top priority for the Department of Health. The Department is working with diverse stakeholders and partners to reduce maternal mortality through multiple initiatives, including the doula pilot program and Governor Cuomo’s Maternal Mortality Taskforce. The Department of Health is developing a Doula Pilot Program for Medicaid eligible pregnant women. The Department is scheduled to meet with the stakeholder community next week to collaborate and receive feedback on the pilot design. The full Taskforce and its membership is currently being finalized, but we anticipate a multi-disciplinary stakeholder group that includes a broad range of women’s health providers, including midwives, doulas and ob/gyns, and women’s health advocates. The Department values the input of midwives and doulas in this work and there will be various opportunities to work with the state on this important work in addition to the taskforce.
On June 6, Ancient Song’s Chanel Porchia-Albert told me in a text message that there’d been a webinar earlier that week with the Department of Health, and that her organization had been “excluded from the certification process” for the doula program. She also mentioned that no one from the Department of Health had yet reached out to them to discuss the design of the pilot program or the task force.
Ancient Song is located on Marcus Garvey Boulevard and Broadway Avenues, in Bed Stuy, bordering Bushwick, both neighborhoods with a higher portion of residents living in poverty, a higher share of black and Hispanic residents, and higher rates of infant mortality than the rest of New York City. In speaking to no less than six birth doulas, all women of color who practice or have practiced in New York in the past 10 years, they all somehow mention Porchia-Albert’s name.
Bolds of DONA International tells me no one from the Department of Health has contacted her either.
I reached out to Montag again, after Porchia-Albert’s text message, also on June 6. She responded, quickly, “The pilot program is still being developed.”
At the federal level, a few bills related to infant and maternal health have been introduced over the past year. The Senate bill, the Maternal Health Accountability Act, would allow the federal government to support the creation of state-run maternal mortality review committees. The House’s Preventing Maternal Deaths Act of 2017, would fund state review boards and mandate reporting of maternal deaths. Both are still being discussed in committee or sub-committee.
Representative Robin L. Kelly of Illinois introduced the Mothers and Offspring Mortality & Morbidity Awareness, or the MOMMA’s Act, at the end of May. It’s comprehensive legislation that would expand Medicaid access to post-partum care, standardize maternal mortality data collection, review obstetric protocols and address the concerns of racial bias in the healthcare system. It has been referred to the energy and commerce committee, chaired by Rep. Greg Walden of Oregon, for further action.
The inaction and confusion at the state and federal levels say a lot about gridlock and bureaucratic disorganization, but also, who and what we value in our society. I sense that none of this will be resolved without a fight. Regina Conceiçaõ of the New York Coalition for Doula Access, who wants all women to have access to doulas and for more hospitals to be open to a collaborative model of care, welcoming midwives, doulas, and other birth support workers, says that “really listening to women,” would be a transformative leap.