This article is an excerpt from a report by Human Rights Watch entitled I am Not Dead But I am Not Living. To truly understand the dimensions of the issue of obstetric fistula in one country of Africa, please read the full report.

The excerpt is part of a series by Rewire with contributions from  EngenderHealth, Guttmacher Institute, Human Rights Watch, the International Women’s Health Coalition, the Fistula Foundation, the United Nations Population Fund (UNFPA), and the Campaign to End Fistula. 

All articles in this series represent the views of individual authors and their organizations.  Articles in Part 2 can be found at this link, and all articles in the series can be found at this link.

From I am Not Dead But I am Not Living:

[Fistula] is a condition that denied me the chance to enjoy my life as a young person. I was isolated and rejected. All my nights were nights of shedding tears due to genital sores. I carried the condition for 12 years without knowing that I could be treated here in Kenya…. I made several attempts to take my life and was admitted to [a] mental ward.… In May 2007 a successful surgery was done.… The closure of that hole is not all that these women need. After I was operated on, I was returned to the mental ward again. You realize, I am not dead, but I am not living.

—Amolo A., a Kenya woman who had a successful fistula repair and is a community educator on fistula, Nairobi, November 26, 2009

Medically fistula is caused by obstructed labor. But also there is obstructed transport, obstructed family planning, obstructed emergency care, obstructed rights.… Everything is obstructed.

—Dr. Khisa Wakasiaka, a reproductive health expert and fistula surgeon, Nairobi, November 11, 2009

Tens of thousands of women and girls around the world suffer every year from obstetric fistula, a preventable childbirth injury that results in urine and/or stool incontinence. Fistula causes infections, pain, and bad smell, and often triggers stigma and the breakdown of family, work, and community life.

The full global extent of this problem is not known. According to the World Health Organization, fistula strikes roughly 50,000 to 100,000 women and girls every year, mainly in resource poor countries in sub-Saharan Africa and Asia. In Kenya approximately 3,000 women and girls develop fistula every year, while the backlog of those living with untreated fistula is estimated to be between 30,000 and 300,000 cases. There are many doubts about these estimates because few studies have been conducted to establish the extent of this problem in the country. Fistula sufferers are mostly young women and girls with little education. They often come from remote and poor areas where infrastructure is underdeveloped and access to health care, particularly emergency obstetric care, is lacking.

A woman who develops fistula has already gone through the trauma of a long, painful obstructed labor. In most cases, the labor ends with a stillbirth. As the woman begins to recover from the grief and agony of the failed delivery, she discovers that her body is painfully damaged. She might think that she is suffering from temporary, somewhat normal incontinence. But then she begins to smell, her clothing and bedding are constantly wet, her thighs sting, and she might develop ulcers on her vagina. At first, the woman might try to hide her condition, but usually this is impossible. Sex is painful, and her marriage, as a result, might start to fray or even turn violent. She might be thrown out by her husband, her relatives and friends may think that she is bewitched or cursed. In all likelihood, she will stop working, going to market, and participating in social or religious life. She might live in pain and isolation for years, even decades, before learning that surgery could fix her condition. This news will not be enough for many the fistula survivors who lack the resources and autonomy to pursue surgery. For some, however, surgery provides a chance for a new life.

The Kenyan state violates the rights of fistula sufferers in multiple ways, by denying them their internationally-guaranteed access to the highest attainable standard of health, to health information critical to women’s and girls’ wellbeing, to their reproductive and maternal health, and to a remedy for the injustices and denial of service that they face. Kenya, as a party to numerous international and regional human rights instruments such as the International Covenant on Economic, Social and Cultural Rights (ICESCR), the Convention on the Elimination of All Forms of Discrimination against Women (CEDAW), and the African Charter on Human and Peoples’ Rights (African Charter), is obligated to act to rectify these violations and to eliminate the discrimination that both contributes to the disabling condition of fistula and results from it.

This report is based on field research conducted by Human Rights Watch in November and December 2009 in hospitals in Kisumu, Nairobi, Kisii, and Machakos as well as in Dadaab in March 2010. We interviewed 55 women and girls ranging in age from 14 to 73 years, 53 of whom had fistula. Of the 53 with fistula, twelve were girls aged 14-18 years. We also interviewed nine obstetric fistula surgeons, one anesthetist, three hospital administrators, and nine nurses working in hospital gynecology and labor wards, five of whom worked in fistula wards. We interviewed four secondary and four primary school teachers regarding sexuality education in schools. Further, we talked to nongovernmental organizations working on health and women’s rights, government officials, professional associations for doctors and nurses, international donors, United Nations representatives, and an elected councilor representing a ward in Machakos.

Reproductive and maternal health care are considered top development and human rights priorities. The UN Committee on Economic, Social and Cultural rights has identified the lowering of maternal mortality, and morbidity such as obstetric fistula, as a “major goal” for governments in meeting their human rights obligations. Under the Millennium Development Goals, governments have committed to improve maternal and reproductive health through a 75 per cent reduction in the maternal mortality ratio from 1990 levels, and achieving universal access to reproductive health by 2015.

The Kenya government has taken some positive steps to improve women’s and girls’ reproductive and maternal health. These initiatives include eliminating charges for public family planning services, antenatal and postnatal care, and prevention of mother-to-child HIV transmission. The government has also eliminated charges for delivery in dispensaries and health centers to encourage women to deliver in medical facilities with a skilled birth attendant. In addition, by introducing a system of full or partial fee waiver for access to government hospitals, the government has taken steps to increase access to health care for indigent patients. However, as this report shows through the voices of fistula survivors, many women and girls, particularly the poor, illiterate, and rural, are not fully enjoying the benefit of these policies, and there is urgent need to reevaluate and scale up many of the responses.

The report discusses five areas that require increased attention in order to improve maternal health care and reduce obstetric fistulas: access to family planning information and services, the provision of school-based sexuality education, access to emergency obstetric care including referral and transport systems, overcoming economic barriers to maternal health care services and fistula treatment, and health system accountability.

Women and girls need access to information to make informed choices about their sexual and reproductive lives. They also need information about access to services which help ensure a healthy pregnancy and delivery, and for treating obstetric complications such as fistula. Yet information on reproductive health, family planning, potential complications during pregnancy and childbirth, the advantages of facility deliveries, what fistula is, and the availability and cost of fistula treatment and maternity-related services are all lacking among many of the women and girls we interviewed, and even among some health providers.

For example, 20-year-old Kwamboka W. became pregnant at age 13 while in primary school, developed fistula, and lived with it for seven years before hearing on the radio about a United Nations Population Fund (UNFPA) funded fistula repair camp offering free surgeries. She told us, “I didn’t know anything about family planning or condoms. I just went once and got pregnant. I still have no idea about contraceptives.” Despite some government efforts to introduce sexuality education in upper primary and secondary schools, Kenya has not made it part of the official syllabus and as a result there is no time allocated within school hours to teach it.

In 2004, the government conducted a fistula needs assessment that showed lack of awareness about fistula in communities as a barrier to its prevention and treatment. Six years later, the government has not taken adequate steps to educate the population, nor to correct the myths that exist about fistula in many communities.

The Kenya government’s efforts to ensure affordable maternity care for poor rural women and girls have fallen far short of even its own goals. Upwards of three quarters of the women and girls interviewed by Human Rights Watch described economic constraints as a barrier to accessing maternal health services and fistula repair surgery. Almost all women and girls interviewed for this report told Human Rights Watch how difficult it was to raise the money needed for fistula surgery. To its credit, the government supports donor-funded fistula repair “camps”—consisting of short-term mobilization of women and girls, screening for obstetric fistula, and providing surgery for those affected—in district and provincial hospitals around the country several times a year. These camps offer free repair surgeries, but do not cover all associated costs. In addition, government hospitals offer exemptions and waivers for indigent patients, but these policies have been problematic in practice.

The health user fee waiver policy does not work for several reasons: lack of awareness of the policy among patients and some health providers, some facilities’ reluctance to publicize the waivers and deliberate withholding of information when requested by patients, and vague implementation guidelines, including the criteria for determining the financial needs of a patient. Many women and girls living with fistula are poor, but none we spoke to had received a waiver.

Women with obstructed labor, which can lead to fistula, need emergency obstetric care such as Cesarean sections. Inadequate access to emergency obstetric care, especially for poor and rural women, is a longstanding problem in Kenya. Kenyan government statistics have shown that capacity to manage complications during childbirth is weak in many health facilities, including referral facilities such as hospitals. Currently available statistics show that less than 10 percent of all medical facilities in the country are able to offer basic emergency obstetric care, and only 6 percent offer comprehensive emergency obstetric care.

Moreover, health facilities, especially in rural areas, are perpetually understaffed, further limiting timely assistance and referral when women develop obstetric complications. Many women with obstetric complications develop fistula and experience stillbirth simply because ambulances and fuel are lacking.

In order to correct systemic failures in reducing maternal deaths and obstetric fistula, it is important to get feedback from patients on the quality and acceptability of services provided. But accountability mechanisms, which should serve the purpose of identifying systemic problems in Kenya’s health system, are far from effective. There should be accessible ways of providing such feedback, lodging complaints, and ensuring such feedback is acted upon. Real accountability mechanisms would not only enhance trust in the health system but also improve utilization and success of maternal health services.

Most of the women Human Rights Watch interviewed did not know how, or to whom, they could complain about or challenge any of the above barriers. Nor did they have any faith that complaints would result in improved treatment. They were also afraid of retaliation by health staff if they complained. We found no indication that the government had taken any steps to enable illiterate patients to understand their rights and to lodge grievances.

While fistula surgery is increasingly available, the government and organizations providing repair surgeries have paid little attention to the long-term needs of women and girls for physical, emotional, psychological, and economic support after surgery. There are no formal initiatives by the government or other service providers to rehabilitate and reintegrate fistula survivors into families and communities. Fistula survivors have endured social and psychological torment that is unlikely to end with surgery. Women may continue to be stigmatized even after successful repair due to lack of fistula awareness in communities, and unsuccessful repairs can be traumatizing for women. Further, fistula places a heavy financial burden on survivors and their families, and as a result they may need support to become economically productive after repair.

The World Health Organization has developed important recommendations for clinical management of obstetric fistula, as well as program development to address issues of fistula prevention and rehabilitation. However, Kenya has not developed a national strategy to address fistula despite conducting a needs assessment in 2004. The WHO recommends that national strategies to address obstetric fistula be integrated into existing programs on safe motherhood and those to improve maternal and neonatal health generally, but Kenya is not adequately doing this.

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This series is being published in conjunction with renewed efforts by advocates and the public health community to increase U.S. international support for efforts to address obstetric fistula, a wholly preventable but debilitating condition caused most immediately by obstructed labor and too early or too frequent childbearing, but generally rooted in lack of access to health care and discrimination against women.  Fistula affects the lives of individual women, their children and families, and also grossly undermines women’s economic productivity and participation in society. The global public health community has called for comprehensive strategies both to prevent new cases and treat existing cases of fistula.  Congresswoman Carolyn Maloney (D-NY) will soon introduce legislation intended to support a comprehensive U.S. approach to fistula as part of a broader commitment to reducing maternal mortality and morbidity worldwide.