NAIROBI, KENYA -- Sylvia Singi wanted to commit suicide.
She lost two children after complications during childbirth. For eight years following her stillbirths, she was an outcast in her community because she developed a fistula – a tiny hole between her bladder and vagina – after the strenuous, failed childbirths. As a result, she leaked urine.
"I was frustrated and stigmatized and even thought of committing suicide. The disease was making me uncomfortable and embarrassed,” Singi said.
Late last year, Singi says she finally had an operation to sew the fistula shut. Her life, she says, was transformed. But after eight years of suffering, she says she now wants to join the campaign to create awareness among other women who may be suffering in silence or unable to access treatment.
There are 3,000 new fistula cases each year in Kenya, more than one fistulas per 1,000 deliveries. The World Health Organization estimates that more than 2 million women around that world have untreated fistula. Fistula is characterized as one of the most debilitating pregnancy related disabilities. In Kenya, a lack of trained doctors, prohibitive costs and a minimal public health messages contribute to the prevalence of the disease here. Most often, fistula is the result of an injury suffered during childbirth. Fistula affects young women who become pregnant at a very young age, women who do not have access to maternal health care, and women from rural areas who have transport and financial barriers to care.
Dr. Weston Khisa Wakasiaka, an outreach surgeon with The African Medical and Research Foundation, AMREF, one organization working to combat fistula throughout Africa, says 90 per cent all fistulas occur in Africa.
"Fistula in Africa is linked to the status of the health care system, malnutrition, poverty and ignorance. Women must be empowered with knowledge and resources to take decisions that enhance their health,” says Wakasiaka.
Wakasiaka says the lack of trained personnel, supplies and equipment in the local hospitals are the major causes of the continued prevalence of fistula in Kenya.
Countrywide, AMREF estimates there are only ten trained fistula surgeons, several of whom may already be retired.
The lack of trained doctors directly impacts the high cost of the procedure.
Fistula corrective repair surgery costs about 30,000 Kenyan shillings, about $375 USD, at the main referral hospital, Kenyatta National Hospital in Nairobi – an amount that is prohibitive for many of those affected. In private hospitals the cost has been reported to be five times as high. Only 7.5 percent of women in Kenya are able to access treatment, according to the United Nations Populations Fund, UNFPA. Kenya is ranked 147 out of 182 countries on the United Nations Human Development index. Per capita income is roughly $770 USD per year, which is about $2 per day.
According to Human Rights Watch, the government here “made a great stride” when it began offering free maternity care in dispensaries and health centers, but the level of care is basic and does not help the women who develop complications.
With medical treatment difficult to come by, most women with a fistula remain subject to social stigma, myth and isolation.
Fistula is often linked to taboo conditions such as HIV/AIDS, abortion and infertility. Fistula survivors are thought to be cursed. As a result, a newly released Human Rights Watch report revealed that scores of women and girls with fistula in Africa are often abused, beaten, abandoned, and isolated. The primary cause of the isolation is the strong odor associated with the condition – many women leak urine and even stool continually.
The Human Rights Watch report, "'I Am Not Dead, But I Am Not Living’: Barriers to Fistula Prevention and Treatment in Kenya,” revealed that stigma often forces women into desperate home remedies that cause kidney disorders or greater physical harm. In some communities, women have been documented inserting hot rods in an attempt to “seal” their own fistula. Human Rights Watch interviewed 55 women and girls ranging in age from 14 to 73.
African women’s rights researcher, Agnes Odhiambo says fistula survivors endure social and psychological torment that is unlikely to end with even after surgery because communities remain unaware of the root causes of the disease.
"Poor, rural, and illiterate women and girls are often the ones who develop obstetric fistula or die during pregnancy and childbirth," Odhiambo said. “Early marriages and female genital mutilation are some of the major causes of fistula,” she added.
“Important information and services are not reaching them, and this shows that government policies that promise health care equality are not being carried out,” she adds.
Public Health officials in Kenya say there are programs in place to increase awareness of the disorder. "We are integrating obstetric fistula into safe motherhood initiatives and equipping hospitals across the country with medical kits and qualified personnel to treat fistula,” said Dr. Anne Wamae, head of Child and Adolescent Health at the Kenyan Ministry of Health, in a speech she read on behalf of Public Health and Sanitation Minister Beth Mugo.
Local, regional and international NGOs continue to supplement government efforts here, but advocates say more resources are needed to eliminate fistula.
“We want to train as many health workers as possible so that they take over the responsibilities of doing fistula repairs. Today, 80 percent of surgeries are carried out by health specialists from countries where we operate and we only assist where complications occur,” said Mette Kjaer, country director of AMREF in Kenya.
Some international organizations are using new technologies to increase public health messaging on this issue. Anne Gloag of the Freedom from Fistula Foundation, a Scotland-based NGO, says they are working to combine radio campaigns and the popular mobile phone money transfer systems in Kenya to reach rural women with fistula messaging and provide them with bus fare to health facilities.
