After Years of Suffering, Hope for Women in Malawi

International Day to End Obstetric Fistula is May 23. Jeff Wilkinson, MD, associate professor of obstetrics and gynecology at UNC, likens victims of obstetric fistula to modern-day versions of Job: they have lost their homes, their families, and their health. Funded by the Freedom From Fistula Foundation, with additional support from UNC Project-Malawi and the Institute for Global Health & Infectious Diseases, Wilkinson is surgically repairing fistulas and saving Malawian women from the devastating condition.

Jeff Wilkinson
Jeff Wilkinson, MD, associate professor of obstetrics and gynecology at UNC, surgically repairs fistulas in Malawi.

by Zach Read,

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 Dr. Wilkinson. “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, Dr. 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, Dr. 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. Dr. 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 & Gynecology, performing fistula surgeries is daunting, even for skilled surgeons. He has assisted Dr. Wilkinson during elaborate surgeries including ureteral reimplantations and other procedures. Dr. Thorp stresses how fortunate UNC is to have someone with Dr. 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 Dr. Thorp.  “Dr. 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 Dr. 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,” Dr. 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.

Dr. 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, Dr. 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 Dr. 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 Dr. 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.”

Dr. 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 Dr. 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. 

Planning for the Future

Malawi Residents
The inaugural cohort of the Malawi OB-GYN residency program. From left to right: Priscilla Mvula, David Zolowere, Priscilla Phiri, George Chilinda
In a country of 15 million, Malawi has fewer than 10 trained obstetrician-gynecologists. One of the best ways to improve safe delivery in the country is to grow the trained health care workforce. UNC Global Women’s Health and the Institute for Global Health & Infectious Diseases collaborate with the Malawi College of Medicine on a four-year OB-GYN residency program, the first in the country.

The goal is to have a qualified OB-GYN consultant in every district hospital within 10 years.

Residents are trained at Bwaila Hospital in Lilongwe, one of the busiest maternity hospitals in the region. Partners in this effort include the U.S. CDC, the Norwegian government, the Bill and Melinda Gates FoundationBaylor College of Medicine, and private donors. The first class of four OB-GYN residents started in October 2013.

About Kathryn Stein

Masters of Public Health Student at UNC, recorded stories of women at the Fistula Care Center for three monthsIn 2012, Kathryn Stein spent three months taking photos and recording stories of the women who sought care at Bwaila Maternity Hospital's Fistula Care Center. During this time she worked closely with other staff to interview more than 30 patients, teach photography skills and print photos for patients, and facilitate activities. Kathryn is passionate about the intersections between health, social justice, and the arts. She holds a Bachelor of Social Work from McGill University and a Certificate in Documentary Arts from Duke University's Center for Documentary Studies. She is currently a second year Masters of Public Health student in the Department of Health Behavior at the UNC’s Gillings School of Global Public Health. 

About Charity Chisale

Charity Chisale started working as a translator to help with a multimedia project and interview the patients who came to the Fistula Care Center in Lilongwe, Malawi in March 2012. Charity Chisale started working as a translator to help with a multimedia project and interview the patients who came to the Fistula Care Center in Lilongwe, Malawi in March 2012. So far she has talked to over a 100 women.

Since 2012, she developed an interest in spending more time with the patients to understand what they have been through and provide psycho-social support to them. She is passionate about working with these vulnerable women. Currently, she is studying at the University of Malawi, Polytechnic Continuing Education Center in order to obtain a Diploma in Community Development.

Liviness Ageniya

Liviness Ageniya, a patient of the Fistula Care Clinic in Malawi“When I had the fistula,” Liviness said, “I was living a sad life. It was like I was being tortured. People would tell me, ‘You’re not a person because you’re leaking. You’re worthless.’”

Liviness became pregnant while studying at boarding school. When she told her boyfriend that she was pregnant, he denied any responsibility. His parents agreed, and told Liviness’ parents, “Our son is not responsible. He’s too young.” He was 18 years old at the time. Liviness, then 16, left school, ashamed. 

During her pregnancy, Liviness wondered, “Will I be able to have the baby? Will I be able to take care of the baby?”

Though she had questions about labor and delivery, she did not ask them and nobody provided her with information about what to expect. She decided to wait until her delivery, certain that the doctors would tell her what to do.

She went to the local health center on her due date.  Labor pains started at 3 a.m., and she stayed at the health center the entire day, unable to push her baby out. Eventually Liviness had lost too much blood, so health providers called an ambulance and referred her to the district hospital.

She couldn’t walk. At some point, she lost consciousness. When she woke up, her mother said, “Your baby panicked and died. When the baby was born, the baby was already dead.”

After being discharged from the hospital, Liviness lived with her parents. Her mother was supportive, helping her through the five months it took her to walk again. Neither she nor her parents talked about the baby again.

Liviness had a successful operation at Bwaila’s Fistula Care Center, and with encouragement and financial support from the Center’s school scholarship program, she returned to her boarding school and started the ninth grade again. When we interviewed her, she was doing well, ranked 7th in a class of 123 students.

Liviness said that she hopes to become a nurse. “They were friends to me and made me feel better,” she said. “I want to help people.”

She is back in touch with friends who had shunned her after she became pregnant. “You need to take your time,” she tells them. “Don’t rush into getting married. I got this fistula because I got pregnant at a young age. If you wait, you’ll meet someone and you’ll have a good marriage in the future.” 

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Gloria Nkoma

Gloria Nkoma, patient of the Fistula Care Center in Malawi“When my baby was due, I couldn’t deliver on time because the baby went up instead of down,” said Gloria. “My baby survived. His name was Willard.”

Willard was born via C-section.  Gloria’s wound didn’t heal at first, so she had to have another operation. After the second surgery, her husband, uncle, and doctor donated blood for the transfusions that saved her life. 

When Gloria returned home, she found that she was leaking urine. “I thought that maybe it was because of the blood that was given to me during the transfusion,” she said. “I thought, maybe it has worked, so that is the water coming out of the blood.”

She stayed in her village, but after five months a village health worker looked at her swollen stomach, heard that she was leaking urine, and advised her to go to Bwaila Maternity Hospital.

A month earlier, Willard too had gone to the hospital. “I was sick at that time and didn’t have enough milk,” she said. “The baby was crying a lot. We thought maybe he was just crying, but he was losing a lot of weight.”

“We were told the baby doesn’t have enough milk,” said Gloria. “They said, ‘We can’t see any problem with the baby.’ We went to buy milk but it was too late.”

Willard died at five months old.  

Gloria’s husband came to Willard’s funeral, but he only stayed for two days. He promised to come back but never returned.

Gloria was 18 when she met her husband, and they got married two years later. “My husband used to come in the middle of the night – he had a lot of girlfriends,” said Gloria. “When I confronted him, he would shout at me. I thought maybe that’s what marriage is all about. I didn’t know what to do.”

She decided that she would leave him and move to her parents’ house once her baby was born. “I know there’s HIV now, so I couldn’t stay [in the marriage] with all those girlfriends my husband was seeing.”

Gloria could not leave the marriage until she delivered her baby because she could not risk putting the financial burden of medical care--or even her death--on her parents. “If I needed an operation, I should have it while living with him because he’s the one who’s responsible,” she said. “I didn’t want to go to my mother’s home and give her problems. What if I had gone to my mom’s and died there? You are the one responsible for this pregnancy,” she said to her husband. “If I am to die, I will die here, because you are the one who is responsible. Not at my mom’s place.”

She advises other young women not to rush into marriage and instead to concentrate on their studies. Gloria finished eighth grade in 2008, when she was 17, and hopes to find funding to go to high school.

“If you rush, you will get pregnant,” she said. “The man won’t be affected because the girl is the one who is pregnant. And pregnancy is not easy.”

Gloria said she doesn’t plan to get married again and that even if she wanted to, it could be hard to find a husband who doesn’t want children. She said that this experience has taught her the good and bad of marriage.

She has accepted that she will never have children and is moving on with her life.

“For me, I almost died, so I just thank God for the life I have now,” she said. “Not having a child is nothing compared to what the Lord did for me – He gave me this life. I believe he has a purpose for me.” 

Martha Gray

Martha Gray, patient of the Fistula Care Center in MalawiMartha traveled to her local health center two weeks before her baby’s due date, because hers was considered a high-risk pregnancy. Despite arriving at the health center before she went into labor, she lost her baby. Making matters even worse, her uterus burst.

“The nurses kept me waiting too long,” Martha explained.

Two weeks after her discharge from the center, she realized that she was leaking urine. She was told that her condition could be treated at Bwaila’s fistula clinic, and she became hopeful.

She waited for a referral; she thought it was necessary in order to receive care.  In fact, she could have gone straight to the clinic. So she suffered for weeks at home, underwent an operation at another hospital, and spent six weeks in hospitals that didn’t specialize in fistula care. During this time, she began leaking blood as well as urine.

“We felt betrayed,” said Martha’s husband, Gray, as he described the long series of delays and trail of misinformation before reaching Bwaila Maternity Hospital. “I was so disappointed with those medical personnel. If they had referred us here in good time we could have been telling a different story.”

Back at home, some community members laughed at Martha and others took pity on her. Few people had ever heard of fistula.

“As her husband, I was worried,” said Gray. “People started to tell me that I should leave my wife because she won’t be able to have another child. I ignored it all because I am a God-fearing person. So I just left it all to the Lord to help her.”

While Martha was being treated at Bwaila’s clinic, her husband came to visit often from their town, Mchinji, 100 kilometers away. He had to leave their four children, ages six to sixteen, with relatives. Each time he visited, Gray stayed with friends for a week to cut down on transportation costs.

“I am doing this because of the love that I have for my wife,” said Gray. “I am hoping that the operation will be done as soon as possible so that she can go home and be with her children because they have missed their mother’s love.”