‘I became withdrawn, crying a lot, and kept quiet’: living with obstetric fistula
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Version 0 of 1. According to an African proverb, a woman in labour should not see the sun rise twice before the baby is born. But Alice Agwang, from Ngora district in eastern Uganda, saw four dawns before she delivered her stillborn baby at an overcrowded and understaffed hospital. The farmer and mother of two had gone into labour at her village home with a traditional birth attendant and her mother-in-law by her side. Two days later, Agwang’s husband rushed her on a bicycle to a government health centre 12 miles away, where she was eventually transferred to a hospital for a caesarean section. When Agwang began leaking urine uncontrollably as a result of an obstetric fistula, an abnormal hole between her birth canal and bladder, she thought it was normal. Now, 13 years later, she is still incontinent and uses old clothes to alleviate her symptoms. “I’m wet all the time and cannot go out in public,” says Agwang. Despite her ignominy, she is now happy to talk about the experience, eager to educate people about fistula, a condition that – though preventable and usually treatable – affects more than 2 million women (pdf) in sub-Saharan Africa, south Asia and Arab countries. Dealing with the issue has been far from easy for Agwang. “I became withdrawn, crying a lot, and kept quiet, not talking to anyone,” she says Four months after she developed the fistula, her husband, like many other spouses of women with the illness, abandoned her. He married another woman and warned the children he has with Agwang not to be seen with their mother, whose body odour means she is teased when she dares to move through her village, called Madoc. Agwang normally leaves her house only for church or funerals, even then sitting alone. If anyone does visit her house, she cannot serve them food and hides her wet bed sheets. “It is the worst thing that can go wrong with a woman,” says Dr Fred Kirya, a senior consultant surgeon at Soroti district hospital in eastern Uganda, who treats fistulas and has seen one woman who had the condition for 40 years. “She will live in isolation. She’s not a woman; she’s not a man – she’s a nobody.” Agwang, 40, is a symptom of a country with a broken health system, where an estimated 16 women die every day from childbirth-related complications. Obstetric fistula is usually a result of prolonged, obstructed labour, but socio-economic factors such as poverty, lack of education and early marriage contribute to its onset and development, says Kirya. “Some women are destined to develop an obstetric fistula early on in life,” he says. Through routine surgery and “repair camps” across Uganda, funded by the UN population fund (UNFPA) with EngenderHealth and Amref Health Africa assisting in some cases, about 1,500 women become “dry” again every year. In 2008, 1,000 women were repaired; last year, nearly 2,500. But with about 2,000 new cases occurring annually in the east African nation and an estimated backlog of 200,000, according to the ministry of health, it’s really a “mopping-up exercise”, says Kirya. In the past, Uganda had to rely on visiting medics from Kenya and other countries to perform surgery, which has success rates as high as 90%, depending on the degree of the injury and skill of the specialist, he says. “Since 2009, there’s been heightened enthusiasm to train Ugandan surgeons,” Kirya, 46, told the Guardian at an international conference attended by more than 300 fistula surgeons and health experts in Kampala last week. “Our number has gone up, but are we able to retain them? This doesn’t pay well.” Today there are 23 fistula surgeons in Uganda, but only four of them are able to carry out the more difficult operations. However, Mulago hospital in Kampala is being certified by the International Federation of Gynaecology and Obstetrics as one of the world’s nine specialised facilities for training fistula surgeons. Early next year, Uganda will begin training surgeons from Rwanda, the Democratic Republic of the Congo and Tanzania to carry out the more difficult surgery. Agwang was first repaired in 2012, but six months after being treated she needed money, so went to her garden to dig. As a result, she’s still ill today. Through a radio advertisement by Terrewode, a Soroti-based NGO, she learned that she could be cured. The charity has female and male fistula ambassadors who move from home to home, identifying vulnerable women and encouraging them to go to antenatal classes and school clubs, and who counsel women with the condition alongside their families before surgery. It’s one thing, though, for a woman with a fistula to have surgery, and another to reintegrate her into a society where many people believe the condition is contagious and women who have it are cursed. “Some of them fear to open up and go and join the communities,” says Martha Ibeno, 30, the programme manager. But over time, and with support, women who were once shunned can come to embrace the world,” she says, adding that Terrewode is also helping Agwang to learn new skills. As she waited for what was hopefully her last operation last month, at a repair camp at Mulago hospital, Agwang’s wish was that things would be different for her daughter, aged 23. “I would never want my daughter to have a fistula,” she says. “If she conceives, she must seek antenatal care as soon as possible and I will discourage her from a home delivery. She must give birth in a hospital.” |