State of the World's Minorities and Indigenous Peoples 2013 - Case study: Obstetric fistula - a preventable but deadly condition for mothers in sub-Saharan Africa

Girls who marry young or suffer genital mutilation are at highest risk from obstetric fistula, a hole in the birth canal caused by prolonged or obstructed pregnancy. The condition is easy to treat – the difficulty is getting women the medical care they need.

Obstetric fistula generally occurs as a complication of pregnancy during which labour becomes obstructed – it is often a result of women labouring for many hours or days without access to medical care. Obstructed labour leads to the development of internal tears and leaves women with chronic incontinence. In most cases the baby is stillborn. Left untreated, fistula can lead to chronic medical problems.

While fistula is rare in parts of the globe where emergency obstetric care is available, in sub-Saharan Africa fistula remains a serious health problem. The East, Central and Southern African Health Community (ECSA-HC) estimates that there are approximately 3,000 new fistula cases every year in both Kenya and Tanzania, and that an estimated 250,000 women in Ethiopia are living with fistula.

MRG talked with Jared Momanyi, the project manager at Gynocare Fistula Centre in Eldoret, Kenya, to learn more about the impact of fistula and how the problem can be addressed.

MRG: Why is fistula an issue for minority and indigenous communities?

JM: Female genital mutilation (FGM) and early marriage are major risk factors for fistula because they increase the risk of obstructed delivery.

Girls who become pregnant before age 19 are at higher risk for fistula because their bodies are not yet fully developed for childbirth. We see a higher rate of these practices in minority and marginalized communities in Kenya and across East Africa. For example, many of our cases come from Pokot, where rates of FGM and early marriage are high. We have begun seeing an increase in cases from Samburu and Maasai communities recently, as those groups have begun to learn about our services. Poverty also is a risk factor, as poverty can lead to girls being married at an earlier age and then have higher risk for fistula.

MRG: How does fistula affect women in their families and communities?

JM: The stigma associated with fistula is terrible. Because the condition leads to a constant smell of urine, many women are pushed away from their families and communities. For example, just the transport for a woman to come to the hospital can be a difficult experience. Here in Kenya we use matatus (minibuses that seat 14 people in close quarters) and people may refuse to travel with a woman who has fistula because of the smell. How can you get to the hospital if no one will bring you? We have women here who have been dealing with the condition for many years. The victims are so poor and have limited communication with the world outside their community so they may remain with fistula for more than 50 years in some cases. The treatment women have experienced often is so bad that after the surgery some of them do not want to go home. We continue to try to find ways to work on community reintegration for survivors.

MRG: What services does Gynocare's programme provide for women and girls who have fistula?

JM: Gynocare clinic was started by Dr Hillary Mabeya in 2010. Since then we have conducted more than 850 fistula repairs, but we have 300 women on our waiting list. We provide women and girls with surgical repair, post-operative recovery and counselling. The psychosocial impacts on women are very severe and, for many, coming to the clinic is very frightening, so our counsellors provide a critical service to help women feel comfortable. While women are in recovery they stay here with us and we provide their food and housing. The services are free of charge and we receive donor funding to support our work, in particular from Direct Relief International and One By One Fistula Foundation. We have also started a programme in which survivors become community educators. After they have successfully recovered, interested women are trained to spread the word about fistula and to help identify women who are in need of our services. We also have some cases of young girls who come to our clinic. If we find that they might be in danger if they return to their community or if they wish to stay in school, we try to support them financially to do so.

We actually have been receiving patients from other East African countries, including Uganda, Tanzania and even South Sudan. Although there are fistula services in those countries, often it is easier for women living in border areas to reach our services.