This article first appeared in the St. Louis Beacon, Nov. 22, 2009 - It is a pleasant fall afternoon on the Washington University campus, and Dr. Lewis Wall, a professor of obstetrics and gynecology, is delivering a lecture to a roomful of young students -- all women -- in Anthropology 3625: "The Female Life-Cycle in Cross-cultural Perspective.''
The subject today is the ancient origin of male and female circumcision, and though the discussion is at times explicit, the students seem quite comfortable with Wall's calm, clinical presentation. Most take notes furiously on their laptops in this classroom far-removed from the sometimes-shocking scenes of the documentary he is about to show about a young woman in Togo being ushered into adulthood through female circumcision.
Before the class began, Wall had been telling a reporter about his own work in West Africa, in the nation of Niger. Wall is on a campaign to help women -- some about the age of the students in this class -- who are suffering from obstetric fistulas, an unspeakably cruel female condition, which is the result of childbirth gone terribly wrong.
There is no nice way to describe fistulas. Here is a definition, courtesy of the United Nations Population Fund: "An obstetric fistula is a hole in the birth canal caused by prolonged labor without prompt medical intervention (such as a Caesarean section). In most cases the baby is stillborn, and the mother is left with chronic incontinence. The odor of leaking urine or feces, or both, leaves the woman a social outcast."
Most Americans have never heard the term "obstetric fistula" because the condition stopped being a problem in the United States a century ago. Fistulas were nearly eradicated by modern obstetrics and what Wall describes as "universal coverage" for childbirth.
"Nobody in this country even believes this is possible because it is so far removed from our own experience of childbirth," he said. "This is the one area that we do have pretty much universal coverage. We don't care if some Vietnam vet vomits himself to death behind the VA hospital, but people are outraged if a teenager gives birth in an alley because she doesn't have health insurance. Those women have to be taken to a hospital, they have to be admitted, they have to be cared for. We do have universal access, and nobody's in labor for three or four days unless they decide I'm going to have this baby myself in my apartment, and they deliberately exclude themselves from the health care system."
When it comes to obstetric fistulas, it's all about where you are born, he said.
"I sometimes just look at the class and think, 'You have no idea how different your lives are and how different they would be if you were born in Niger. Most of you would have two or three children already; you'd be halfway through your lifespan.' Where you're born and who you're born to makes a huge difference," Wall said
Outcasts in their own families
The United Nations estimates that 2 million women suffer from untreated fistulas in the underdeveloped nations of the world. These women -- or, young teen-agers -- often survive days of agonizing labor without medical treatment. They are left devastated by stillborn babies and damaged bodies, with no control over their bladder or bowels.
The fact is, no one wants to be around these women -- not their husbands who often leave them -- or their parents or brothers and sisters, said Wall, who has spearheaded an international campaign to build a fistula hospital in Niger, where an estimated 100,000 women have untreated fistulas.
"They're smelly. You might be polite for a few minutes, but for 24 hours a day? The families frequently say, 'We're sorry. You're part of the family and we love you, but you're going to have to live over there,' " he said.
These women are destined to live out their lives alone -- as unwanted as lepers -- even though their bodies can be repaired by surgeries that cost about $300 to perform, Wall said.
"Medical care is not terribly expensive in African countries, but even that amount of money that seems trivial to us is frequently a year's cash income for the people in those countries," Wall said. "And the women tend to be young. They tend to be illiterate. They tend to be impoverished. They tend to be from rural areas. They don't have resources of their own. They are politically voiceless. Their life choices are being a wife and mother, and so that starts early. They frequently don't have much say about when they get pregnant or under what circumstances they have sexual relations. There are a lot of pregnancies that occur in reproductively vulnerable women who then get this catastrophic outcome through no fault of their own."
Wall said that many fistula patients are teenagers who get married before their pelvis has reached adult capacity.
"But we met women in their 60s who had fistulas for 20, 30, 40 years," he said. "Some of the fistulas are truly awful, but some of them are small and just don't take a lot of technical expertise to fix. It's just heart-wrenching that somebody would have to live like that for want of access to basic surgical services."
Wall and Steven Arrowsmith, a doctor known for his expertise in fistula treatment, established a nonprofit foundation -- the Worldwide Fistula Fund -- in 1995 to raise funds for fistula care centers in Africa. The government of Niger recently approved his group's plan to establish a fistula hospital in what is now a leprosy hospital in the village of Danja. Wall and a medical team will be spending two weeks there in December to get the site going. Those efforts were the subject of a recent op-ed column by Nicholas Kristof in the New York Times.
Wall acknowledges that it can be difficult to convince people to help when they don't understand the problem.
"If I said the word small pox to you or AIDS babies, you'd know immediately what I'm talking about," he said. "If I say the word fistula to you, you look at me blankly. And so I have a five-minute explanation. Most people if they sit through the five-minute explanation are horrified. And once the penny drops for women who've had a baby, they get it in a big way. They remember what happened to them. If you can make the connection it tends to be pretty powerful."
Making a decision to make a difference
Wall's decision to become a doctor grew out of his experience in northern Nigeria related to his first career -- anthropology. He earned a doctorate in anthropology as a Rhodes Scholar at Oxford University and was in Nigeria on a Fulbright Fellowship.
"My dad was an ob-gyn, and I had always rebelled against the idea of a medical career, and then I got interested in the cultural aspects of medicine and more of the practical side of anthropology," Wall said. "And when I did the fieldwork, I realized that probably these villagers needed doctors more than they needed anthropologists. It also looked like it would be insurance to put food on the table with a medical degree."
Wall, who is a Kansas City native, graduated from the University of Kansas School of Medicine in 1983 and completed a residency at Duke University School of Medicine. In 2002, he joined the School of Medicine at Washington University, where he has a joint appointment with the anthropology department.
"My father knew he wanted to be a doctor from the age of about 5, but he grew up in a dirt poor community in the Oklahoma panhandle during the Depression. His question was not what he wanted to do but how in the world would he ever be able to do it. It was basically World War II and the GI Bill that allowed him to do it," Wall said. "For a long time I was interested in archaeology and Egyptian archaeology and thought I was going to be an Egyptologist. It was unquestioned parental support. There aren't many parents who would say, want to be an Egyptologist? Go for it."
Wall said his father, Leonard Wall, now 88, is very interested in his work. He serves on the board of the Worldwide Fistula Fund and participated in a fistula medical expedition.
"I have a picture of him at 80 years operating," Wall said.
Wall said that it makes sense to open centers that will focus on fistula care because most African district hospitals are already overwhelmed by patients. The decision to team with the existing leprosy hospital is a practical one.
"There is an interesting synergy about dealing with the outcast population that nobody else wants to deal with," he said. "There are a lot of image issues. There are a lot of psychosocial wounds that have to be healed. There is a lot of financial, social reintegration that needs to take place. It really is a natural partnership, and as the prevalence of leprosy has declined through ongoing eradication programs the leprosy hospital is seeing a decreasing number of patients and needs to look at ways to augment its mission."
The fact that the hospital is nearing reality comes after years of effort, disappointment and failed plans, but Wall said it is important to keep pushing.
"Because the women don't have anybody else to depend on, and if you give up they're friendless," he said. "There is so much suffering in the world that if you look at it globally you'll get depressed. But you can change the world one person at a time. And that's what you should do."
What is a fistula?
At least 2 million women in sub-Saharan Africa and Asia are living withuntreated obstetric fistulas, and about 50,000 to 100,000 new casesdevelop every year.
An obstetric fistula is a hole in the birth canal caused by prolonged labor without prompt medical intervention. In most cases the baby is stillborn, and the mother is left with chronic incontinence. The odor leaves the woman a social outcast. In addition, untreated fistula can lead to chronic medical problems, including ulcerations, kidney disease and nerve damage in the legs.
The fistula problem in Niger
* Women in Niger have the highest fertility rate in sub-Saharan Africaand one of the highest maternal mortality rates. Eighty-five percentdeliver at home, either unassisted or without the help of a trainedprovider.
* Young age at pregnancy predisposes women todeveloping fistulas. The average marriage age for women in Niger is 15,but in certain regions girls marry as early as age 9. Traditionally, ayoung girl lives in the home of the man she is to marry andsexual relations are not to begin until she reaches menarche. Thatcustom of waiting has eroded, according to health researchers.
* An estimated 100,000 women in Niger suffer from fistulas, with about 8,000 new cases every year. The majority develop fistulas during their first pregnancies.
* More than one-third of girls in Niger, ages 15 to 19, have either been pregnant or have at least one child.
* Most fistula survivors in Niger have been abandoned by their husbands and are illiterate, in poor health and without resources.
* Simple surgery can normally repair the injury,with success rates as high as 90 percent for experienced surgeons. The average cost of treatment and post-operative care is $300.
Sources: The Worldwide Fistula Fund and the United Nations Population Fund.
Want to help?
* Here are links to the Worldwide Fistula Fund and the United Nations' Campaign to End Fistula.
* The documentary "A Walk to Beautiful" follows the journey of five Ethiopian women seeking fistula treatment. TheEmmy-winning documentary has aired on the PBS "Nova" series; you can watch it on YouTube or the documentary's website.
