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The Fight to End Fistula in South Sudan

A program that offers free surgery to women suffering obstetric fistula wants to go beyond hospital care and focus on family planning to stop the condition before it starts, while also supporting women as they reintegrate into their communities after treatment.

Written by News Deeply Contributor Published on Read time Approx. 4 minutes
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Health experts estimate that at least 60,000 women in South Sudan suffer from obstetric fistula, which can cause uncontrollable leakage of urine or feces. (News Deeply Contributor)

JUBA, South Sudan  Betty Joseph waved a piece of cloth in front of her face while lying in a bed at Juba Teaching Hospital, in South Sudan’s capital. It was her attempt to ward off the heat from the scorching sun that beamed through the windows of the fistula ward.

Two years ago, Joseph lost her baby during a complicated delivery. She was left with obstetric fistula, a condition that forms when the tissues between a woman’s vagina and anus are damaged, resulting in a hole through which urine, feces or sometimes both can leak.

Women suffering from fistula are often subject to stigma and ridicule from the people in their communities. Joseph was isolated by her family – who kept her away from friends and neighbors – and abandoned by her husband.

“I had a very shameful situation as I leaked urine and stool. It made me smell. It’s very embarrassing,” she said.

There are no reliable statistics on the rate of fistula in South Sudan, but health groups estimate 60,000 women and girls in the country suffer from the condition. Early marriage and teenage pregnancy contribute to the problem, as the bodies of young girls are not developed enough to withstand the rigorous labor process. UNICEF has reported that 52 percent of girls in South Sudan are married before their 18th birthday.

The prolonged conflict in the country, along with poor health infrastructure and lack of healthcare resources, leaves many women and girls without access to prenatal care and emergency obstetric fistula treatment.

Joseph is lucky enough to live in Juba, a relatively calm part of the country. Along with around 30 other patients in the ward at Juba Teaching Hospital, she received free surgery to fix her condition through a campaign by the United Nations Population Fund (UNFPA), in collaboration with South Sudan’s Ministry of Health and Sanitation.

The campaign is part of the Strengthening Midwifery Services (SMS) Project, an initiative mainly funded by the government of Canada’s Department of Global Affairs and the Swedish Development Cooperation Agency that focuses on training midwives so that more women can deliver their babies with the help of skilled birth attendants.

The project educates midwives on how to recognize women who are at risk of fistula and take the steps to prevent it from happening. One way is by promoting family planning, because if women are visiting clinics for regular advice and prenatal checkups, midwives can more easily spot any coming complications.

“We are training midwives to be able to identify problem cases, to manage deliveries to avoid complications [that can cause fistula], and to start women on family planning so that pregnant women and girls can have access to antenatal care to avoid all these problems,” said Dr. Wilfred Ochan, South Sudan’s deputy country representative for UNFPA.

For women and girls already affected by the condition, the UNFPA holds regular clinics, where the organization provides free reconstructive surgery.

The most recent campaign in April initially had a target of repairing 40 fistulas, but ended up exceeded that, with 60 women and girls successfully treated in Juba and Aweil town, in the northwest of the country.

But those involved in the program know they are still a long way from their ultimate goal of ending fistula entirely in South Sudan. “We have a backlog of between 40,000 to 60,000 women suffering from fistulas who are living out there in the country, so what we have started doing – 60 successful repaired cases – is like a drop in the ocean,” said Dr. Alexandra Dimitry, director general of reproductive health in the Ministry of Health.

To make the program scalable and sustainable, the UNFPA flies in surgical experts from around the continent to carry out the surgeries and train South Sudanese staff to do it themselves.

“The idea is for us to ensure that we have the local specialists who can surgically treat these cases,” Dimitry said.

As part of the UNFPA program, more than 60 women have been successfully treated for fistula at Juba Teaching Hospital (pictured) and a hospital in Aweil town, in northwest South Sudan. (AFP/Camille Lepage)

Along with social isolation, fistula sufferers are often unable to work. Survivors, even after surgery, can still struggle to reintegrate into their communities due to the loss of their livelihoods.

To help these women, the UNFPA plans to start a reintegration program that uses various sites as dedicated “women-friendly” spaces offering psychosocial support and counseling to former fistula sufferers as well as survivors of sexual and gender-based violence.

“It’s a space where women will meet to interact and support each other. But we’ll also train them on life skills and [how to make a] livelihood,” says Ochan from the UNFPA.

“We hope that with this, we don’t just repair and leave them, but repair and support them to go forward.”

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