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Doctor raises money for obstetric fistula surgeries

A fate worse than death for some African women

Morgan Winsor | 5/25/2013, 7:13 a.m.
It's a condition practically unheard of in the United States and most Western countries. But in a culture where a ...
Each year, 18 women who have fistula surgery at Comprehensive Community Based Rehabilitation are selected to join the Mabinti Training Center, where they learn sewing, printing and jewelry-making. They're also taught how to speak English and run a small business. Courtesy David Lindsay

— It's a condition practically unheard of in the United States and most Western countries. But in a culture where a woman's status and dignity is decided by her ability to provide a husband with multiple children, it can be a fate worse than death.

"Obstetric fistula" is a mouthful. But to these women, it's much more than just a physical injury. They see themselves as the walking dead, says Dr. Justin Paluku Lussy, head of the department of obstetrics and gynecology at HEAL Africa Hospital in Goma, Democratic Republic of the Congo.

An obstetric fistula occurs when a woman withstands days of obstructed labor, when a baby's head is constantly pushing against her pelvic bone during contractions -- preventing blood flow and causing tissue to die.

This creates a hole, or a "fistula," between a woman's vagina and her bladder or rectum. Her baby is unlikely to survive. If the mother lives, she is unable to hold her urine and, in some cases, bowel content, Paluku Lussy says.

A woman with a fistula, who is perpetually leaking urine and sometimes feces, is often rejected by her husband and shunned by her village because of her foul smell and inability to bear more children.

"These women have so much shame and so much fear. They spend so much money on perfume trying to cover up the smell," says Alison Heller, a doctorate student at Washington University in St. Louis who is leading a research study of 50 women in Niger awaiting fistula surgery. The women range in age from 15 to 70.

An estimated 20% of Paluku Lussy's fistula patients report feeling ostracized by their communities, and divorce is common, says the doctor, who started his residency in 2001 at HEAL Africa, a 155-bed tertiary hospital with a fistula repair unit.

"People think fistula patients are witches and just have bad luck," he says.

Although an estimated 2 million women in Asia and sub-Saharan Africa live with untreated obstetric fistula, according to the Fistula Foundation, it's unlikely for these women to meet or hear of anyone else suffering from the same injuries, because of the lack of modern forms of communication and also the women's reluctance to discuss the condition, Heller says.

In most cases, a woman with a fistula doesn't know what a fistula is or that it's treatable with surgery. And if she does, she is far from any hospital and doesn't have money for -- or access to -- transportation, let alone the average $450 cost for repair surgery plus postoperative care.

One of the youngest in Heller's study, a 15-year-old girl who was married off to her uncle at age 8, spent eight months selling bags of candied peanuts in order to raise enough money to pay for a taxi so she could get to a fistula center.

Such concerns are foreign concepts to most Westerners, says Dr. Lewis Wall, a professor of obstetrics and anthropology at Washington University in St. Louis. That's because obstetric fistulas were largely eradicated from the United States by the 20th century, with strides in prenatal care and the use of cesarean section.