Obstetric fistula is nearly nonexistent in the global north—the last fistula hospital in the United States closed its doors in 1895—yet more than 2 million women live with fistula in the global south, most of them in sub-Saharan Africa. Niger is ranked the poorest country in the world on the United Nations Human Development Index, and it also has the world’s highest total fertility rate of 7.6 births per woman. This confluence of extreme poverty and pronatalism makes women in Niger particularly vulnerable to developing fistula, which is linked to rural poverty and the resulting lack of access to quality emergency obstetric care.
Fistula is portrayed as a highly stigmatized condition by well-intentioned media and donor organizations. In my research, however, I found that fistula tends to exacerbate pre-existing social vulnerabilities rather than being the sole cause of them. Still, while experiences of overt mistreatment due to their condition are rare, for women with fistula, incontinence is a source of profound shame. Seeing surgery as a solution, women travel hundreds, and sometimes thousands, of miles to fistula centers for surgical repairs.
The 100 women I came to know were almost completely homogeneous in terms of educational attainment (almost none), rural origin (almost all), and religion (all Muslim). However, they also reflected marked diversity in ethnicity, regional and national origin, age, length of time living with fistula, and number of pregnancies. Although fistula is often thought of as a condition exclusively affecting young, first-time mothers, the women I met developed fistula anywhere between age 13 and 54—throughout their reproductive lifespans, from their first to 12th labors.
The women I met had lived with fistula for anywhere from one month to 50 years, despite the fact that many of them had sought and undergone treatment. Indeed, during my time in Niger, it became clear that fistula repair surgery is not a discrete event; it is often a process, one that may take many years—sometimes decades. The pursuit of a solution often requires several surgeries, an abundance of patience, and engagement with a dozen or more fistula centers, which entails traversing regional, ethnic, and sometimes national borders. And even still, women are frequently left incontinent.
For many women, time at these clinics represents one surgical failure after the next. Only 36 percent of women I came to know left clinics continent. Some women had spent eight or nine out of the previous 10 years at fistula centers, undergoing surgeries and praying for continence. Relying on a rhetoric of “destiny,” “fate,” and “the will of Allah,” women privately struggled to make sense of having bodies that could not be redeemed through the scalpels of surgeons.
Time marches on, and women often spend months or years away from their families, friends, communities, children, and husbands. With each failed surgery, the prospect of restored continence decreases while the social cost of pursuing treatment increases.
Stuck at fistula centers without family, farming, cooking, and other responsibilities, women often have very little to do. Without a scheduled appointment for surgery, women pass the months on hospital grounds tending to their hygiene, braiding each other's hair, and making bracelets to sell outside the hospital walls for 5 CFA (about one U.S. penny) apiece—their only source of spending money.
In Niger, a woman’s strongest defender and advocate is typically her mother, who provides protection, support, and love that help insulate women from destructive social dynamics. Unlike women who are deeply embedded in protective, maternal social networks, those without mothers are often left vulnerable to social stigma once they develop fistula, and they may have an increased risk for developing the injury in the first place. Following the death of a woman during childbirth, the young daughters she leaves behind tend to be married off earlier and their health is not prioritized, which places them at greater risk for maternal complications as they age.
During the birth that causes fistula, 90 percent of babies die. Because women with fistula tend to have very poor access to maternal health care throughout their lives, when I counted stillbirths of all full-term pregnancies, the 100 women with fistula I came to know had a 76 percent child mortality rate. Beyond the doors of any fistula center, groups of children roam and play, but on the grounds of fistula hospitals, children are rare. Using discarded catheters and IV tubing as jump ropes and cardboard boxes as play cars, the handful of kids create a life of make believe in these confined, transitional spaces of waiting.
Although fistula is thought of as highly visible, many women I met concealed their condition for months, years, or even decades from their communities, families, co-wives, and—most impressively—their husbands. Yet women are often unintentionally “outed” by organizations aiming to help. For example, television stations broadcast donation ceremonies for which they instruct women to publicly testify and offer thanks.
Despite relatively modest rates of surgical success, women often do find that hospitals become sites of transformation—places to refashion their bodies, if not surgically then through careful self-management. By sharing techniques with one another, women learn how to dress, bathe, walk, sit, and cover themselves in order to conceal their incontinence. When women finally return home, they can often “pass” if the surgery was not successful. But concealment comes at a high price to women’s psychosocial health, since those who are most successful in concealing their conditions are often seen by their kin and communities as having rejected vital tenets of relational reciprocity.
Fearing that her pad would become saturated and that she would begin to leak or smell, 27-year-old Aissa was reluctant to leave her home for any extended period of time. She began to neglect her relationship obligations, avoiding marriage ceremonies, baptisms, funerals, and regular visits with friends. After several years of concealing her condition by isolating herself at home, her friends’ visits became increasingly infrequent, and Aissa felt as though she had few close connections. Sadly, with a shrug, she repeated a common Hausa proverb, zumunta a kafa ta ke—“good relationships depend upon [one’s] feet.”
Through all of the hardship they experience, women with obstetric fistula demonstrate incredible resilience. Whether 17 or 71, married or divorced, mother to children or rendered infertile and childless, most women in Niger who have the “sickness of leaking urine” carry on with hope, grace, and patience. For them, it is the only option.
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Unable to access quality emergency obstetric care, millions of women across the global south, and particularly in sub-Saharan Africa, shoulder the burden of health care systems that are crippled by post-colonial politics and poverty. In sub-Saharan Africa, 1 in 36 women will eventually die from pregnancy-related complications due to health care systems that fail them. Where I work, in the West African country of Niger, the rate is even higher: 1 in 23 Nigerien women will die from maternal causes. To give some perspective, the lifetime risk for women in the United States is 1 in 3,800.
In addition to shockingly high rates of maternal mortality, for every woman who dies from obstetric complications, many more survive with chronic disabilities. This photo essay centers around women in Niger who live with and seek treatment for obstetric fistula. Fistula, a birthing injury that results in chronic incontinence of urine and/or feces, is caused by prolonged obstructed labor due to inaccessible biomedical interventions such as cesarean section and forceps delivery.
Over the course of 18 months, I followed 100 diverse women with fistula, who came from rural and urban Niger as well as neighboring countries, as they sought treatment in four fistula centers. These women’s lives are, in many ways, stories of corporeal, emotional, and social hardship. But they also encompass stories of community, family, and solidarity. Their accounts ring with laughter born of struggle and of resilience and personal growth gained through long and lonely journeys.
Alison Heller is a medical anthropologist who studies reproductive health and humanitarianism in West Africa. She received her Ph.D. from Washington University in St. Louis and is currently a traveling faculty member for the International Honors Program (IHP)/Comparative Program run by World Learning. Before starting as an assistant professor at the University of Maryland, College Park, she will complete a fellowship at the School for Advanced Research in Santa Fe, New Mexico. Heller’s research has been funded by the Fulbright-Hays Program, the National Science Foundation, and the Wenner-Gren Foundation.
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![Fearing that her pad would become saturated and that she would begin to leak or smell, 27-year-old Aissa was reluctant to leave her home for any extended period of time. She began to neglect her relationship obligations, avoiding marriage ceremonies, baptisms, funerals, and regular visits with friends. After several years of concealing her condition by isolating herself at home, her friends’ visits became increasingly infrequent, and Aissa felt as though she had few close connections. Sadly, with a shrug, she repeated a common Hausa proverb, zumunta a kafa ta ke—“good relationships depend upon [one’s] feet.”](https://www.sapiens.org/app/uploads/2016/05/12_IMG_3430-1024x683.jpg)
