Restoring health, restoring lives

By the early twentieth century, obstetric fistula was essentially eliminated in the United States. The last fistula hospital in the country closed its doors in 1895. Built in its place is one of New York City’s most famous luxury hotels, the Waldorf Astoria.

More than a decade into the twenty-first century, fistula persists in many poor nations. According to the World Health Organization, more than 2 million women worldwide suffer from the devastating effects of fistula. In the sub-Saharan African country of Malawi, it is estimated that fistula may occur in 2 percent of deliveries. It is also where UNC associate professor of obstetrics and gynecology Jeff Wilkinson works in collaboration with the Freedom From Fistula Foundation (FFFF) to surgically repair fistulas at one of the country’s busiest maternity hospitals.

“In the United States, you may see small fistulas that result from injury during a hysterectomy or occasionally from radiation or infection, but fistula from obstructed labor comes along maybe once in a career,” says Jeff Wilkinson, a physician and associate professor of obstetrics and gynecology at UNC. “They virtually never happen.”

Fistula occurs when the baby’s head is too big to pass through the bones of the mother’s pelvis. In high-resource settings, a woman in this situation would immediately go in for a caesarean delivery. In low-resource settings, women go into labor in remote villages far from a health care facility or in a hospital or health facility that doesn’t provide C-sections or a significant delay occurs at a critical time in the delivery. The baby’s head compresses the soft tissues of the pelvis, resulting in areas of dead tissue that ultimately lead to a hole between the bladder and/or rectum and the vagina. The baby dies ninety-five percent of the time, and women are left leaking urine or stool from their vagina.

During his medical training, Wilkinson knew that he wanted to help women enduring the devastating consequences of obstetric fistula. It took a few years after his urogynecology fellowship at UNC to find the right opportunity. While on faculty at Duke, he traveled to Niger for several weeks a year for his initial fistula training. Then he lived in Tanzania for two years and gained further experience performing fistula surgeries.

“Like any other complex surgical condition, it takes a lot of time with good mentoring,” he explains. “You work with people who are highly experienced in the field to get enough exposure to feel comfortable doing the surgery. Some surgeries are fairly straightforward, others are more complicated, and still others are extremely complicated.”

Since joining the UNC School of Medicine faculty and UNC Project-Malawi in 2011, Wilkinson, in collaboration with FFFF, has performed 400 fistula surgeries. Women of all ages have been his patients, from teenage girls to elderly women in their eighties.

“We’ve had women who had a fistula for as long as 50 years before coming for care,” he says.

Women who suffer from fistulas tend to be shorter than average and got pregnant very young, before pelvic growth had completed. Wilkinson estimates that 30-40 percent of his patients were teenagers when they became pregnant.

According to John Thorp, MD, Hugh McAllister Distinguished Professor, Department of Obstetrics and Gynecology, performing fistula surgeries is daunting, even for skilled surgeons. He has assisted Wilkinson during elaborate surgeries including ureteral reimplantations and other procedures. Thorp stresses how fortunate UNC is to have someone with Wilkinson’s astounding skillset on faculty.

“The surgery is so technically complex that it’s more difficult than any American doctor will see in a whole career,” explains Thorp. “Wilkinson is the savant of this surgery – he’s amazing.”

Among the more complicated procedures are urinary diversions, a technique not often undertaken in sub-Saharan Africa. Only a handful of fistula centers routinely do them.

“They’re more complex and require greater degree of post-operative care for the patients than more common fistula surgeries,” says Wilkinson.

As he explains it, when a woman’s bladder is either too small to hold any urine or the urethra and the nerves and muscles around the urethra are completely destroyed, the bladder can’t function normally again no matter what kind of surgery is performed. About 3 percent of his patients require the procedure.

“We take the ureters – the tubes from the kidney to the bladder – and divert the flow of urine into the sigmoid colon so that they urinate and defecate at the same time,” Wilkinson says. “But in doing this you have to make a low-pressure pouch out of the sigmoid colon so they are less likely to get infections in the kidneys and damage the kidneys long term.”

The average fistula surgery takes 1 to 1.5 hours to complete; urinary diversions, on the other hand, take about twice as long.

Wilkinson has operated in Tanzania, Malawi, Sierra Leone, and Niger, and he acknowledges that the operating conditions in these places can present challenges. Electricity, water supply, and the most basic supplies aren’t always reliable or available at all.

“I’m fortunate to have a very nice battery-operated head lamp that I use in all cases,” Dr. Wilkinson says, laughing. “But it wouldn’t be uncommon here at all for the lights to go out in the middle of a surgery and for the physicians to have to complete the surgery using the lights of a cell phone. We’ve done that before.”

Despite the occasional power outage, Wilkinson says that the resources he has available through his collaboration with FFFF and the additional support from UNC, make conditions much better than in the previous settings in which he has worked.

“By far we have the best setup here,” he says. “We’re well-supplied and have reliable, consistent, and well-trained staff, all things that are routinely taken for granted in the West.”

Although more attention than ever is being paid to women’s health in places like Malawi, educating women about their health – and educating young people to take control of their health care – remains critical to eliminating fistula. In developing nations, the condition still discriminates. It targets the poorest and most vulnerable women, many of whom live in remote areas and have scant access to education and health care. Women suffering the effects of fistula are often shunned by their communities, left by their husbands, and even ostracized by their families and friends.

“Once a person gets a fistula, she goes from a very low status in society, which women already have in that culture, to being a virtual outcast,” says Thorp. “The women are essentially doomed and their lives are ruined. It’s almost as if they were dead but alive – I think many would prefer to be dead – and many commit suicide.”

After suffering the loss of the baby during childbirth, enduring the constant leaking that follows them, and losing ties to their own communities, it is estimated that 70 percent of women with obstetric fistula will never have another live birth.

“It depends on the degree of injury and where the injury is,” says Wilkinson. “We have a lot of patients who go on to get pregnant afterwards, but the damage is so extensive to the pelvic organs in some that they’re unable to get pregnant or carry a child if they do get pregnant.”

Wilkinson passionately advocates for women with obstetric fistula both before and after surgery. He is currently mounting an effort to build a school for fistula patients so that they can access formal education and gain financial literacy after they’ve been through successful surgery.

“By definition, they’re among the strongest, most resilient people you’ll come across,” he explains. “They have to be, given what they’ve been through.”

To learn more about Wilkinson’s work with UNC Project-Malawi and the Freedom From Fistula Foundation, please visit the UNC Institute of Global Health & Infectious Diseases, UNC Department of Obstetrics and Gynecology, and the Freedom From Fistula Foundation.

Read more stories from UNC Health Care about Malawian women who have been saved from fistulas.