by Marty Fisher

Obstetric fistula in Sub-Saharan Africa is anything but polite dinner table conversation.

The condition is so devastating, the symptoms so disturbing, and the solutions so complex, it’s easy to see why—even after Oprah Winfrey dedicated a show to it in 2004—many people aren’t aware of the tragedy.

Fistula victims in Africa and some Asian countries are among the world’s most powerless people. They live in rural areas of impoverished countries and are bound by tradition to an early marriage arranged by their family. Most become pregnant in their teens. Early marriage protects families from the unspeakable shame of an unwed mother and brings hope in the form of a dowry—land, a camel, or a goat. But the practice exacts a cruel price for the more than four million women who live with obstetric fistula today.

Malnourished and still in adolescence, their bodies are too small to deliver a baby. They can endure as many as six days of obstructed labor before finding medical help. The baby is almost always born dead, and the pressure of its head damages the mother’s tissues and creates an opening, or fistula, between the vagina and the bladder and/or rectum.

The woman is left with no control of her bodily functions. Urine and sometimes feces leak from her constantly. Some women are also left with a crippling neuromuscular condition known as “foot drop,” caused by damage to nerves in the legs from prolonged squatting in labor.

Confronted with the smell and the mess, many husbands abandon their wives. Sometimes the women are not even able to return home to their families. Unable to bear children and unwelcome in society, “fistula women” as they are known, become modern-day lepers.

The irony is that obstetric fistula is preventable with education and access to prenatal care and cesarean delivery. In all but the worst cases fistula can be repaired with a surgical procedure that costs just $300. Recent news coverage by Oprah, New York Times reporter Nicholas Kristof, Wall Street Journal reporter Roger Thurow, and others has led to greater awareness of the problem and the need for ethical standards for fistula treatment and prevention among such a vulnerable, under-represented population.

Now Duke has a fistula champion in the form of Assistant Professor of Obstetrics and Gynecology Jeff Wilkinson, MD, a urogynecologist who has made several
surgical trips to Niger, Africa, with the International Organization for Women in Development (IOWD).

A typical villager's hut in Niger.

Wilkinson has been joined by a group of Duke medical faculty who recently formed the Duke Obstetric Fistula Working Group. The group received a $48,500 Duke Provost’s Commonfund grant to host an international workshop on ethical issues in obstetric fistula in March.

Attended by leading activists in women’s health from this country and many from Africa, the workshop was co-sponsored by the Trent Center for Bioethics, Humanities, and History of Medicine and the Duke Global Health Institute and held in conjunction with the 2007 Boyarsky Lecture in Law, Medicine, and Ethics given by international human rights attorney Rebecca J. Cook, MPA, JSD, of the University of Toronto.

Michael Merson, MD, who introduced Cook and is the director of the Duke Global Health Institute, identified reducing maternal death and disability in low income populations as a priority for Duke’s global health initiative.

“With every passing minute, somewhere in the world, a woman dies of omplications of pregnancy and childbirth, and another 20 are injured,” said Merson. “This injustice can no longer be tolerated.”

A Community Effort

Wilkinson’s first clinical experience with obstetric fistula in Africa happened a little over three years ago in Niamey, the capital of Niger, one of the poorest countries in the world. After completing a fellowship in urogynecology at UNC-Chapel Hill, he had to wait several years before he found an opportunity to join a surgical team organized by IOWD, which was founded in New York in 2003. IOWD surgical teams travel to Niger five times a year, and Wilkinson has been back with them twice since then.

He says that to truly be of service to a developing community, global health projects must go far beyond the surgical repair of obstetric fistula or any other health problem.

"Fistula women," as they are kown, become modern-day lepers.

“If you just go over and fix fistula and don’t take into account these women’s pre-operative status, their post-operative care, their reintegration into society, then you’re not doing much of a service,” says Wilkinson. “The goal of any meaningful project that’s run by Westerners is to create sustainability in the local community.”

In Niger IOWD’s founder and director, Barbara Margolies, has the support of the president and first lady. IOWD has appointed Dr. Abdoulaye Idrissa, a native of Niger who trained in Nigeria, to oversee fistula surgery at the National Hospital. Dr.
Abdoulaye, as he is called, is committed to public education about the causes and prevention of fistula and to training future fistula surgeons. Another Nigerien native, a woman named Amoul Kinni Ghaichatou, MD, oversees the educational program for fistula patients and the community.

Cursed by God?

The courtyard outside the National Hospital in Niamey is a haven for “fistula women” from Niger and surrounding countries. Many have traveled great distances across harsh desert terrain, sometimes with children in tow and sometimes with a relative— mothers and sisters, and rarely a father or husband—for support. They set up camp in the courtyard, selling handwork and hanging the copious amounts of laundry they must wash to stay clean.

Dr. Abdoulaye Idrissa with some of his patients.

“For the first time in their lives, they actually have a bathroom and running water, and places to hang their laundry,” says Wilkinson.

Not too long ago women waited months or even years for medical attention, but with regular visits from IOWD’s surgical teams and now Dr. Abdoulaye on staff the wait can be from one week to two months.

The U.S. team of six to eight surgeons generally arrives in the afternoon, each carrying about 140 pounds of medical equipment, says Wilkinson. The next day they examine the patients, who have been prescreened by doctors and nurses in Niger.

Even with translation assistance by Peace Corps volunteers, communication is a challenge. Although French is the official language of Niger, patients may use one of four or five tribal languages. Most of the women don’t understand what has happened to them, and many believe they have been cursed by God.

“When you have the conversation going from English to French to Fulani to Hausa, Djerma, or even TouBou, it’s almost unimaginably complex,” says Wilkinson. On the first trip the group examined about 100 patients and completed 50 surgeries in 10 days.

“The trauma is unimaginable in some women,” says Wilkinson. “Most can be cured, although many will still suffer from stress incontinence. Some have an irreparable condition and require a diversion procedure. We also see a lot of patients who’ve had surgery elsewhere who’ve had failures.”

Even when the physical problem is healed, women who have lived with fistula for a long time may never fully recover from the psychological and emotional scars of years of living in shame and isolation.

Faces of Hope

Obstetric fistula is just one part of the much bigger problem of maternal morbidity and mortality in developing countries. More than 500,000 women each year die of post-partum hemorrhage, and millions more suffer injury or permanent disability from childbirth.

“Historically, women’s issues take a back seat on the global health scale,” says Wilkinson. “Funding for diseases like HIV and malaria is exceedingly important, but we also need to put women’s health at the forefront.”

Haywood Brown, MD, chair of obstetrics and gynecology at Duke, supports greater involvement in educational and outreach initiatives in global women’s health.

“Dr. Wilkinson has piqued the enthusiasm of our faculty, residents, fellows, and students,” says Brown. “We hope to partner with university-wide global health initiatives to assist in finding solutions to the health challenges faced by women and their families.”

Hope for the future is personified in the faces of the women in the Niamey courtyard. Despite all they have suffered, their smiles are broad and their eyes sparkle. They take great pride in their personal appearance, wearing brightly colored dresses and decorative headscarves.

Two of the women—Haoua and Mariama—have taken jobs with IOWD as nursing assistants, helping other women prepare for and recover from fistula surgery. Haoua endured seven days of unattended labor and required extensive surgery. Mariama suffered with fistula for 12 years and lived a number of years in the courtyard before doctors could repair her fistula and a failed colostomy.

Both women are now working professionals, and Haoua has remarried. Both supplement their meager incomes with handcrafts—Haoua used the profits from selling her silver jewelry to buy a wedding bed, and Mariama sold embroidered handkerchiefs to buy goats for her mother.

If families are the bedrock of a society, then it seems logical that empowering women—through education and health care—can only strengthen developing societies. Wilkinson is committed to getting more people to talk about and take action against obstetric fistula and other health problems of women—and not just in developing societies. Women without insurance in this country are not able to receive treatment for urinary incontinence and prolapse. He advocates for universal health care and regularly participates in surgical missions to the Navajo reservation in Arizona.

Matter-of-factly, he says, “This is what I’m going to do with my life.” This summer, he and his family will travel to Tanzania and Kenya to look for semi-permanent jobs as Duke faculty. Their travel is being funded by the Hubert-Yeargan Center for Global Health, and they hope to be able to live in Kenya and work in partnership with a Duke global health project there.