The resilience of the women was surprising, as was their appreciation for just being heard. After all, they are at the bottom of the social hierarchy in one of the world’s poorest countries. No one had shown much interest in their stories until an Oregon State University student showed up last winter.
Fistula survivors gathered with Bonnie Ruder at Terrewode shortly before her departure from Soroti in March. (Photo courtesy of Bonnie Ruder)
Bonnie Ruder, a midwife in Eugene and an Oregon State master’s student in public health and anthropology, had gone to Uganda to learn about a traumatic condition known as obstetric fistula. It arises when labor is prolonged and the constant pressure of the baby on the birth canal causes tissue to die and a hole to open between it and the colon or urethra. Globally, about 2 to 3 million women suffer with the condition and the heartbreaking social isolation it causes. In Uganda alone, about 140,000 women live their days unable to control persistent leakage of urine or fecal matter, and about 1,900 new cases arise there annually. (See Birth Knowledge, an October, 2011, Terra story about Ruder’s research.)
During her time in Uganda, Ruder worked in a regional hospital in the town of Soroti. She interviewed 17 fistula survivors in their homes and in the offices ofTerrewode, a nearby women’s health organization. She wanted to know what they had experienced and how they understood the causes of fistula. This summer, she is analyzing the information for her master’s thesis in OSU’s Reproductive Health Lab, but her eventual goal is to assist Terrewode in educating and treating women and reducing the number of new cases.
“It was eye opening,” she says. “I heard their stories about trying to get to a hospital (to give birth), and once they got to the hospital, being ignored for days. They said that the doctors checked on them and just kept saying it wasn’t time. When it finally became ‘time,’ the baby could be dead, and they would rush the women into surgery. The women would be told their baby was dead, that there was nothing the doctor could do, and they would be sent home.”
It was common, Ruder adds, for a woman to be told nothing about what it meant to live with a fistula or how it could be treated. “Sometimes the health-care people would say ‘come back,’ but if she is really poor, how is she supposed to come back? In the meantime, her husband would leave her, and she would be pushed further into poverty to the point where she won’t be able to come back.”
Meanwhile, a potential source of help has been outlawed by the government, she adds. The majority of rural women still give birth at home with the help of a family member or traditional birth attendant. About 60 percent of Uganda’s births occur in this fashion, but in 2010, the government made birth attendants illegal. “They’re really trying to import the Western way of birth without the resources to do it. It doesn’t feel locally appropriate,” she says.
Policy Not Enforced
Fortunately for women who still rely on birth attendants, it’s a cosmetic policy, adds Ruder. Enforcement is nonexistent. Still, what little support birth attendants had received from non-profit organizations has declined, and women have a harder time getting access to attendants’ services.
At the same time, the hospital birthing system is badly overworked. So-called free beds are available, but to use them, patients must bring all their own food and supplies and have a relative or friend bring them any drugs they might need. To get timely help from a doctor or a midwife requires a “tip,” which is usually out of reach of the very poor.
While she was in Soroti, Ruder worked with Terrewode to identify women with fistulas and to get them treated. “If fistula victims can get to town, Terrewode will take them to the hospital and give them all the supplies they need and check on them daily. They’ll tip the doctor to move them up higher on the list of people in line for surgery. And when the surgery is done and women are ready to go home, they also give them bus fare,” says Ruder.
Although she returned to Oregon in March, Ruder continues to assist Terrewode by writing grant proposals. The group is educating a network of women who can promote sound birthing skills and identify fistula sufferers in need of help.
Oregon State’s relationship with Terrewode is continuing through the efforts of another master’s student in public health, Lauren Baur from Pennsylvania. In July, Baur is scheduled to follow in Ruder’s footsteps and go to Soroti to assist Terrewode.