It took three days for Nisehotsara, a farmer’s wife from Betraka, a village on Madagascar’s east coast, to deliver her 10th child. After the difficult birth, she woke up to find her bed soaked with urine.
Nisehotsara was diagnosed with obstetric fistula - a severe medical condition resulting primarily from obstructed labour - in which a hole, called a fistula, develops between the bladder or rectum and the vagina. Affected women are left with chronic incontinence.
“The doctor told me that I needed an operation. I had three of them in three months, but this didn’t help so I ended up living with it for 13 years,” said Nisehotsara.
Obstetric fistula was eradicated in wealthy countries at the end of the 19th century, when caesarean sections became widely available, but according to the World Health Organization, it continues to afflict two million women in sub-Saharan Africa and Asia, mostly those living in poverty, without access to adequate medical services. Left untreated, fistula can lead to chronic medical problems including ulcerations, kidney disease and nerve damage.
According to the UN Population Fund (UNFPA), Madagascar alone accounts for an estimated 2,000 of the more than 50,000 new fistula cases that occur annually.
“The presence of fistula is an indicator that the health system doesn’t work properly,” said Achu Lordfred, UNFPA’s chief technical adviser in Madagascar. “Wherever there is a high maternal death rate, there are cases of fistula. These are the women who escaped death after their difficult delivery.”
Early pregnancy is another major cause of fistula. Girls with under-developed pelvises are at higher risk of experiencing obstructed labour, and Madagascar has one of the highest rates of child marriage in the world. Despite a 2007 law raising the age at which girls can be married from 14 to 18, child marriage remains common, especially in rural areas.
Living with fistula often means living as a social outcast. The smell of leaking urine, faeces or both is stigmatizing. “I was ashamed, so I never went to family reunions like weddings and funerals. I preferred to stay home, because I smelled bad,” Nisehotsara told IRIN.
Saholive Soavina, 28, developed the condition after the birth of her first child nine years ago. “My boyfriend left me after I started leaking urine. I lived with my parents. No one in the village wanted to give me any work, so I was forced to stay at home. I sometimes thought it would be better if I were dead. My parents were poor. They didn’t have enough to eat, and I was just a burden,” she told IRIN.
Yet many women are reluctant to seek treatment, fearing the operation and the expense. Lordfred said it was difficult to estimate the number of fistula cases in Madagascar, but noted that during a recent week of sensitization with mothers, during which his team actively searched for cases, 600 cases were identified and referred to health facilities. “We know that the majority of the women with this condition are still hiding,” he told IRIN.
Finally, a woman in Soavina’s village who had previously suffered from fistula told her about the Fondation Médical d'Ampasimanjeva, a hospital about 50km north of Manakara, where a surgeon performs corrective operations for free.
“I wanted to go, but didn’t have any money. The former patient lent me some and brought me here,” she told IRIN. The trip took three days of walking, mini-bus taxi rides and river crossings by boat.
The hospital’s free surgeries are made possible by UNFPA’s global Campaign to End Fistula, which started in 2003. This year, grants from UNFPA have funded corrective surgeries for 125 women in Madagascar. The US$6,000 grant that the Fondation Médical d'Ampasimanjeva received also covers the women’s transportation costs and living expenses during their hospital stay.
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The average cost of fistula treatment and post-operative care is about $100, far beyond the means of most people in Madagascar, the majority of whom live on less than $1.25 a day. Even those who do pay for the operation are not always cured. Often, several attempts by a skilled surgeon are needed, but until recently only two doctors in Madagascar could perform the operation. In 2011, UNFPA trained a further 14 doctors, and arranged for operations to take place in 10 additional hospitals.
In collaboration with UNFPA, the Ministry of Health is now lobbying for funds to scale up the fight against fistula, with the goal of providing corrective surgery to at least 700 fistula patients in 2013 and intensifying prevention efforts.
After undergoing a successful operation at the Fondation Médical d'Ampasimanjeva, Nisehotsara is recovering in the women’s ward, along with 14 other women. “The women really have a special bond. Whenever one is under surgery, the others all come to sit in front of the operating room and pray,” said Hortense Ranoaivo, the doctor responsible for the ward.
A second phase of the Campaign to End Fistula is now focusing on the social reintegration of former fistula sufferers. Currently, six NGOs are partnering with UNFPA to help fistula survivors return to their communities, earn a living and become advocates for the prevention of obstetric fistula. This involves urging pregnant women to deliver at health facilities and convincing women already suffering from the condition that free and effective treatment is available.
“When I go back, I want to tell the others in the village about this place,” Nisehotsara told IRIN. “There are seven more women in Betraka who have this, and until now, they haven’t wanted to get treatment, but I will try to convince them.”