At age thirteen while in primary school in a rural village in western Kenya, Kwamboka W. had sex for the first time. She had no information about contraception and used no protection during sex. Three months later, Kwamboka was shocked to discover that she was pregnant because, as she told me in an interview seven years later in 2009, “It was my first time and I did not think I would get pregnant.” Kwamboka was more shocked when she later discovered, after laboring for close to three days and delivering a stillborn baby, that she could not control the flow of her urine and stool.
Years later, the pain—both physical and psychological—was still vividly seared in her memory. “My mother tells me, ‘You can’t get married; how can you go to someone’s home when you are like this? They will despise you.’ I was traumatized,” she said. “I thought I should kill myself. You can’t walk with people. They laugh at you. You can’t travel; you are constantly in pain. It is so uncomfortable when you sleep. You go near people and they say urine smells and they are looking directly at you and talking in low tones. It hurt so much, I thought I should die.”
Africa places a high premium on childbearing. However, for hundreds of thousands of women in the continent, giving birth can mean death or living death.
Kwamboka was just one of the more than fifty women and girls I interviewed in 2009 in Kenya who suffered obstetric fistula, an entirely preventable and treatable childbirth injury that leaves women and girls with urinary or fecal incontinence. It is caused by prolonged, obstructed labor—a condition that accounts for 8 percent of maternal deaths worldwide—without access to emergency obstetric care, usually a Caesarean section. During the prolonged obstructed labor, the soft tissues of the birth canal are compressed between the descending head of the fetus and the woman’s pelvic bone. The lack of blood flow causes tissue to die, creating a hole (fistula in Latin) between the woman’s vagina and bladder (vesico-vaginal fistula or VVF) or between the vagina and rectum (recto-vaginal fistula or RVF), or both. Many women live with fistula for several years or for the rest of their life, if unable to access treatment. Other direct causes of fistula include sexual abuse and rape, surgical trauma, and gynecological cancers and related radiotherapy treatment.
Most of the women and girls with fistula whom I interviewed while conducting research for the Human Right Watch report “I Am Not Dead, but I Am Not Living”1 had little formal education, were poor, and lived in rural areas. They had poor knowledge of family planning and contraception. They married early, some as early as fourteen, and became pregnant young. Decisions on where they would deliver their babies were often made by their husbands, mothers-in-law, or other relatives. Many had no jobs, and struggled to pay for transport to reach a facility that could provide them adequate delivery care, usually a dispensary or health center. The facility usually had no capacity to handle obstructed labor and no ambulance to move them to a hospital where they could be helped.
Exactly how many women and girls suffer from fistula in Africa—and globally—is impossible to say with certainty because of poor data collection. Although there is widespread agreement that the existing data likely underestimate the problem, the World Health Organization (WHO) estimates that some two million women and girls currently live with fistula, and roughly fifty thousand to one hundred thousand are affected every year, mainly in sub-Saharan Africa and Asia. In Africa, Nigeria alone is estimated to have 1 million women living with fistula, while about six thousand to fifteen thousand fistulas occur annually in East Africa and nine thousand occur in Ethiopia. In Kenya, about three thousand women get fistula every year and there are some three hundred thousand existing cases. Fistula has been virtually eliminated in the developed world, according to the WHO.
The physical consequences of fistula are severe and can include a fetid odor, frequent pelvic or urinary infections, painful genital ulcerations, burning of thighs from the constant wetness, infertility, nerve damage to the legs, and sometimes early mortality. Many women suffering from obstetric fistula limit their intake of water and food because they do not want to leak. This can lead to dehydration and malnutrition. The majority of women and girls interviewed by Human Rights Watch who were married or in sexual relationships complained of pain and discomfort during sex.
Fistula has a huge psychological impact on women and girls, sometimes leading to depression and suicide. Most women we interviewed described feelings of hopelessness, self-hatred, guilt, and sadness, especially because their families or communities ostracized them.
Another young woman I interviewed in Nairobi in 2009, Kemunto S., told me, “You are always sad because every time you are washing clothes, you stain everything and you smell.” Amolo A., who became pregnant after being raped, described how hopeless she felt before she had successful fistula repair in 2007: “I was raped, the baby was dead, I was leaking urine and I couldn’t be treated. I felt so hopeless. My life was just useless. I was only nineteen. My age mates were getting married, and moving on with their lives and I was an outcast.”
The social consequences of fistula are also dire. Women and girls living with fistula are often ostracized largely because of the foul odor they produce. They are often abused, beaten, abandoned, and divorced by their husbands. Women said they had been mocked and ridiculed for “smelling like a pit latrine,” or “urinating everywhere.” Nyasuguta J. told me about her cousin who was disowned by her family because she had fistula: “Her family said, ‘She is just feces’ and told her not go near visitors. When they see her approaching they say, ‘The one with feces has returned.’ ” A midwife who works with community midwives on fistula in western Kenya said she found most married women living in their parental home: “They have been sent away from their marital homes. Even when they are not sent away, abuse and violence makes them to pack and leave.”
Violence and stigma against women with fistula is also fueled by lack of information about what fistula is and the fact that it can be treated. Almost all the women and girls whom I interviewed had never heard about fistula before they developed it and thought they were the only ones with the problem. Some women thought that incontinence was normal after delivery, or that that they got fistula due to botched Caesarean sections. A man who used to beat his wife due to her incontinence told me, “If I knew that my wife had a medical condition that can be treated, I would not have beaten her. I used to think she is dirty and careless. I feel bad that I beat her.”
Fistula survivors are also thought by some to be bewitched or cursed, or may be accused of being promiscuous. Fistula is more stigmatized when, due to misinformation, it is linked to other taboo conditions such as HIV/AIDS, abortion, and infertility. Wangui K. told me, “People say I have been aborting and are telling my husband to chase me away and marry another woman who can give birth.” In addition to fueling stigma and violence, lack of information about fistula also contributes to delays in seeking treatment, and effectively adds to women’s misery.
Fistula often leads to loss of social belonging and association. Some fistula sufferers live alone or in shacks outside their homes. Many women and girls with fistula lead isolated lives, confining themselves to their homes due to the stigma and shame attached to the illness. A large number of those we interviewed did not go to church, the market, or other social places. For example, Fatuma H. told me she did not leave her home because “When you have this problem you have a lot of worries. You don’t have a lot of comfort. You can’t mix freely with other people. You feel guilty to mix with them. You fear the thing [the cloths used to keep dry] will come out and embarrass you. You can’t even go to church.”
Some girls said they would have wanted to return to school after giving birth, but fistula made it impossible.
Fistula places a huge financial burden on poor families, leading to deepened poverty and vulnerability to repeat fistulas. Fistula victims need regular medical attention and an extra supply of soap to keep clean. Almost all the women I spoke to said they could not afford to buy sanitary pads and instead used rugs and pieces of old clothes to control the constant trickle of urine and feces. It is also expensive to keep the rags clean. Women and girls with fistula may also lose property when they are divorced or chased away by their husbands. Nyakiriro C., for example told me, “When I got the problem, my husband told me to go back to my mother.… I left with no property. He sold the land and the livestock after I left.”
Fistula also decreases women’s abilities to farm or do other economic activities. Although some women are able to work on their farms despite the pain and discomfort they suffer, others are unable to. Some lose jobs or are denied work when employers discover that they have fistula.
Nyaboke H. said, “My husband chased me away when I got this problem [fistula]. He used to beat me a lot. When I went back to my parents, my sister-in-law also became abusive saying she did not want a dirty smelly person in the home. I left, went to a nearby town, and rented a house. I started doing casual jobs like washing clothes and fetching water, but whenever it was discovered that I had a problem of [controlling] urine, I was chased away. Before long, everybody knew about my problem and I stopped getting work. I used to lock myself in the house and cry the whole night, and sleep hungry.”
Some women also quit their jobs out of shame. Because of the shame and guilt women feel as a result of having fistula, they are reluctant to look for work or ask for financial support from their husbands and other family members.
Treatment for obstetric fistula usually consists of surgical repair. For complex cases, repair may not be possible at all, or may fail to prevent incontinence. Some 90 percent of simple cases can be successfully repaired according to the United Nations Population Fund (UNFPA), which funds many procedures. The average cost of fistula repair for simple cases is around US$300-400. Some fistulas can be extremely complicated, involving damage to other bodily systems and requiring multiple, expensive surgeries to treat. Even for simple fistula repairs, most poor families in Africa cannot afford the cost, and women continue to suffer the consequences of fistula. UNFPA and various NGOs support free fistula repairs across Africa. However, although the number of fistula surgeons has increased over the past decade, there are few such surgeons in Africa. Also, in the case of Kenya for example, there is a general lack of interest in fistula training among doctors because the specialty brings little monetary gain. Furthermore, there are few hospitals equipped to handle fistula surgeries.
Yet women do not have to suffer the devastation of fistula, which is a preventable and treatable condition. Prevention requires providing universal access to adequate reproductive and maternal healthcare. Direct prevention measures include availability of emergency obstetric care, including access to a Caesarean section, and skilled birth attendance. Providing comprehensive sexuality education and family planning services to girls and women to enable them make informed choices about their sexual and reproductive lives are also important prevention strategies.
Equally important to fistula elimination are interventions to combat underlying social and economic inequities that contribute to the problem, including women’s low status, lack of education for girls, early marriage and childbearing, malnutrition, poverty, and harmful traditional practices such as female genital mutilation (FGM). In some instances of FGM, unskilled traditional birth attendants perform a type of female circumcision called “infibulation” which may inadvertently extend to the bladder or rectum, causing a fistula. Although prevention is key to solving the problem, it has received less focus in current initiatives to address fistula, probably because, like other global health concerns, it is often the most difficult area in which to demonstrate success.
Years and sometimes decades of living with fistula leave women psychologically, socially, and financially unable to function in their families and communities. A comprehensive approach to fistula also means addressing the reintegration and rehabilitation needs of women and girls who have undergone repair. This can be through the provision of counseling, skills training, financial, and other support, to restore women’s dignity, self-sufficiency, and to ensure future safe deliveries.
The WHO recommends national strategies to address obstetric fistula be integrated into existing programs on safe motherhood and those to improve maternal and neonatal health generally. According to the Campaign to End Fistula, about forty countries have conducted situation analyses on fistula prevention and treatment, and twenty-eight have integrated fistula into relevant national policies and plans. On the whole, an adequately resourced, equitable, and integrated health system is needed to improve maternal healthcare and to address fistula.
But the reality is different in Africa. Even when resources are limited, what is available is often mismanaged or misused, and monitoring of how resources are allocated and used or how the health system is performing is inadequate. These issues are not exclusive to Kenya, where the number of hospitals equipped to handle fistula surgeries is woefully insufficient. Most resource-poor countries, but especially those in Africa, are struggling with these problems. Even in the face these challenges, though, it is clear that many countries could do more to improve maternal healthcare and to restore lives of dignity to fistula sufferers. Countries must move from rhetoric to taking concrete measures to save women’s lives.
Significant progress in addressing fistula has been made in the last decade, particularly since the launch of the UNFPA-led Campaign to End Fistula in 2003. The advocacy and awareness raising activities of the campaign and its partners have contributed to greater visibility and knowledge of the fistula problem at a global level. These efforts have also contributed to resource mobilization for fistula programs—addressing fistula prevention, treatment and care, and rehabilitation—and helped to strengthen health infrastructure.
African countries have pledged under the Millennium Development Goals (MDG) to reduce maternal deaths and to achieve universal access to reproductive health by 2015. Generally, there is more political will by African governments to improve maternal and reproductive health care, which is critical to addressing fistula. As reported by United Nations agencies in 2010, the maternal mortality ratio for sub-Saharan Africa declined 26 percent between 1990 and 2008, although the rate is insufficient to meet MDG criteria.
At the African regional level, there are many declarations and commitments to promoting maternal and reproductive health. These include the Protocol to the African Charter on Human and Peoples’ Rights on the Rights of Women in Africa (Maputo Protocol), the African Road Map for Accelerating the Attainment of the MDGs related to maternal and newborn health (MNH Road Map) adopted by over forty countries, and the Maputo Plan of Action on sexual and reproductive health and rights. In 2009, the African Union began a campaign for accelerated reduction of maternal mortality in Africa (CARMMA), with the slogan “Africa Cares: No Woman Should Die While Giving Life.” Some countries address fistula as part of the campaign. The African Union has also declared 2010-20 the African women’s decade. This will require African governments to grant equal priority to health care for women as for men, and to allocate the necessary financial resources to this important objective.
Some countries have slowly begun to register notable advances in fistula prevention. A 2008 UNFPA report on its Campaign to End Fistula cites “steady treatment progress” in the Democratic Republic of Congo, Mauritania and Niger, largely attributable to “increased human resources, upgraded facilities and the provision of equipment and supplies.”2 A pilot center established in Cote d’Ivoire’s Region of Man successfully trained 12 ob-gyns and surgeons, 42 midwives and nurses, and 240 community health workers in fistula prevention, treatment, and reintegration.
Technology can also be used successfully in the fight to end fistula. Cell phones are an important tool in UNFPA-funded projects, as in Tanzania, where women affected by fistula can pay for their travel to a clinic through money transfers made via SMS text messages; or Mali, where mobile phones are increasingly used to transmit health statistics from the field into national databases.3
Yet despite the political will, and the progress made so far, many women and girls in Africa still lack access to adequate maternity care. The problem remains particularly acute in countries plagued by poverty or prone to violence, such as Ethiopia, Sudan, and Somalia. The Fistula Foundation notes that the number of obstetricians and gynecologists in Ethiopia is “abysmally low”: just one for roughly every 530,000 people.4 African women need action from their governments, not more words. African governments have to redouble their efforts. Words alone will not save the many women, particularly the poor, illiterate, and rural, who continue to die needlessly during pregnancy and childbirth or to live for years in pain due to fistula.
This can change if African governments invest in having strong health systems by ensuring that there are enough health care facilities providing emergency obstetric care, that they are equitably distributed and adequately stocked, and that there are adequate health professionals, including those with midwifery skills. Only then can we proudly say that “Africa Cares: No Woman Will Die While Giving Life.”
Based in Nairobi, Agnes Odhiambo is the Africa researcher for the Women’s Rights Division at Human Rights Watch. She is the author of the 2010 report “I Am Not Dead, but I Am Not Living”: Barriers to Fistula Prevention and Treatment in Kenya. Prior to joining Human Rights Watch in 2009, she worked as the HIV program manager for the South African NGO Gender Links. Dr. Odhiambo holds a Ph.D. from the University of the Witwatersrand in Johannesburg. In this chapter, she discusses the debilitating impact of fistula on African women, and the solutions needed to end the damages caused by this preventable childbirth injury.