Profile: Living with Fistula
Aberesh, Age 22, Ethiopia
At the age of 18 Aberesh was married to an older man in a remote rural area. She became pregnant immediately. The pregnancy was difficult. Labor was obstructed, and Aberesh was unable to deliver. On the third day her relatives decided to get help. They sold a goat and paid men to carry Aberesh on a stretcher for six hours to the nearest hospital. When she arrived, it was too late to save the baby; her son was stillborn.
Aberesh was so weak and exhausted from the ordeal that she could not get out of bed. It took another four weeks before she could walk by herself again. During this time, she began to leak urine from a fistula. Nothing would stop the flow.
Aberesh was fortunate, however. A doctor in the hospital told her relatives about the Addis Ababa Fistula Hospital. Once again, her family rallied to support her and raised money for bus fare to the capital city. At the fistula hospital her repair surgery was uncomplicated, and she recovered completely. While she was recovering, Aberesh learned how to knit and to read by studying the alphabet, and she received information about maternal care.
Adapted from a personal story provided by the Addis Ababa Fistula Hospital (7)
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Consequences Often Severe
Profile: Living with Fistula: Aberesh, Age 22, Ethiopia
Profile: Living with Fistula: Neema, Age 17, Tanzania
A fistula can be devastating. Not only does the afflicted woman almost always lose her baby, but also the lasting physical consequences—including the constant leakage of urine, feces, or both and the resulting odor—make it difficult, if not impossible, for her to lead a normal life (see “Profiles: Living with Fistula,” right and below).
The wide range of adverse consequences, social as well as medical—which has been termed the “obstructed labor injury complex” (4)—has crucial implications for care. “The understanding that one must treat the ‘whole person’ with the fistula—not just her injured bladder or rectum—is the single most important concept in fistula care,” writes Lewis Wall (69).
Often, society blames the woman for her condition, and some women even blame themselves (5). Many fistulas occur among women in traditional cultures, where women’s status and self-worth may depend almost entirely on marriage and childbearing (69). Many fistula patients are abandoned or divorced by their husbands, particularly when it becomes clear that the fistula will not go away (6, 71).
For example, 71% of patients were divorced or separated from their husbands in a recent study of 899 fistula cases at the Evangel Hospital in Jos, Nigeria (70). In India and Pakistan some 70% to 90% of patients studied in the 1980s had been abandoned or divorced (9, 10, 20).
Facing familial and social rejection and unable to make a living by themselves, many women with fistula live for years without any financial or social support (75). Many fall into extreme poverty. At the Addis Ababa Fistula Hospital, one woman in every five reported begging for food to survive (71). Some cannot cope with the pain and suffering and resort to suicide (4).
Other women living with untreated fistulas, however, show remarkable resilience and strength. Despite the stigma, they find ways to support themselves and their children, and some set aside money for years for fistula repair (18).
Profile: Living with Fistula
Neema, Age 17, Tanzania
When she was 15, Neema was raped repeatedly for three days by a man who had tricked her into going home with him. In Neema’s culture she could never go home to her family again. Her family arranged for the man to take Neema as his wife, in exchange for six cows. He took her to Dar es Salaam, where they lived by selling vegetables.
When Neema became pregnant, she sought care at a local maternity clinic. The staff reported no problems with the fetus but advised her to deliver at a hospital. When her time to deliver approached, however, her husband refused to buy her the supplies and food needed for a hospital delivery.
When she was nearly ready to give birth, she moved into her mother-in-law’s house. After a day of painful labor and no end in sight, her husband’s family provided bus fare and accompanied her to the hospital. Next morning, still in labor, she was told to go to another hospital, where she was given a cesarean section. After the operation, a nurse told her that the baby had died.
Soon after the operation, Neema discovered that she was leaking urine. The doctors told her the problem would correct itself. She spent the next two months in the hospital, visited only twice by family members and dependent on other people’s relatives for food and water. When Neema returned home, still suffering from fistula, her husband said he no longer needed her because he had a new wife. But he let her stay, as she had nowhere else to go.
Neema’s brother gave her the money to go for a fistula repair, but her husband stole it and refused to take her to the hospital. Later, Neema’s brother took her. The repair was partially successful. She had to urinate through a catheter, but at least urine was no longer leaking down her legs.
Neema, a fistula patient from Tanzania.
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When Neema returned home, her husband refused to give her food. When she borrowed money to buy vegetables to sell in the market, he stole them and threw her out of the house. Neema began working and finally found a job growing vegetables, investing half of her earnings into a woman’s revolving credit fund. With help from a local organization she established a small business selling vegetables. She is alone, but she can support herself and is working to rebuild her life
Adapted from Faces of Dignity, Seven Stories of Girls & Women with Fistula, Women’s Dignity Project, Tanzania, 2003 (18) www.womensdignity.org.
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