When 33-year-old Viola Nzema* gave birth to her daughter in 2008, she had never heard of obstetric fistula. However, she soon realized something had gone terribly wrong when she started experiencing uncontrollable urine leaks.
Nzema said she felt such humiliation she spent all day inside her house to avoid being around other people. The condition also strained her relationships with her husband and other members of her family – many of them speculated that her condition was a punishment from God for something she had done.
She eventually discovered that she was suffering from obstetric fistula when she saw a television program highlighting stories similar to her own.
“Until I saw it on TV, I did not know about fistula and did not want to talk about it,” she says.
After finally being enabled to put a name to her condition, Nzema was also able to get it treated. In 2013, after five years of living with fistula, she received free corrective surgery from a health-care organization called Comprehensive Community Based Rehabilitation in Tanzania (CCBRT), which is on a mission to improve the lives of the estimated 21,400 women with symptoms of obstetric fistula in the country.
Obstetric fistula is a condition in which a hole tears open between the birth canal and the bladder or rectum. This most commonly occurs during prolonged or obstructed labor if the woman doesn’t get prompt medical intervention, usually in the form of a C-section. In 90 percent of cases, obstetric fistula results in a stillborn baby. Women with the condition are no longer able to hold in their urine or feces, and if left untreated, fistula can lead to other chronic medical problems including kidney disease, ulcers and nerve damage in the legs.
The United Nations Population Fund’s (UNFPA) Campaign to End Fistula estimates that there are at least 2 million women in the developing world living with the condition, with about 50,000–100,000 new cases each year. UNFPA says most women with the condition do not know that treatment is available, and in any case, most cannot afford it – the average cost of fistula treatment and post-operative care is around $400.
To help sufferers get the simple surgery than can change their lives, CCBRT introduced its obstetric fistula program at a hospital in Dar es Salaam in 2003. Since then, the organization has partnered with six hospitals across the country. They cover the full cost of surgery as well as other related costs, such as transportation, food and accommodation for patients.
To date, CCBRT and its six partner hospitals are the largest providers of obstetric fistula operations in Tanzania. They have completed more than 6,000 surgeries, including Nzema’s.
“Before the surgery, I was not well – I couldn’t do anything or go anywhere,” she says. “Now I’m okay. I feel like I was born again.”
Despite the success of the program so far, CCBRT CEO Erwin Telemans says it’s not enough. With 3,000 new cases per year, and not anywhere close to as many surgeries, he says there is “a significant backlog.”
The condition may not be fatal, but it can still destroy lives.
“If untreated, obstetric fistula can lead to chronic medical, social and psychological problems,” says Telemans. “The unpleasant smells from the constant leaking mean women suffering from fistula are often abandoned by their husbands, pushed out from their families and communities and excluded from day-to-day activities such as work, going to the market, going to church and spending time with friends and family.”
To give more women access to treatment, Telemans says CCBRT is working with the nonprofit Amref, Tanzania’s second-largest provider of fistula surgeries, to create more streamlined services across the country. Together they are trying to raise interest among junior doctors to enter the field, and are strengthening maternal health services in hospitals throughout the country through training.
Both organizations, along with UNFPA Tanzania, are also engaging with the Ministry of Health, Community Development, Gender, Elderly and Children to develop a national fistula strategy that would set national goals and targets.
*Name changed for privacy.