Obstetric Fistula Topic Overview This module examines one of the most common and heartbreaking “morbidities” that is a direct result of poor maternal health care. Obstetric fistula occurs when a woman has obstructed or prolonged labor that results in her tearing a hole between her vagina and bladder or rectum. Between 50,000 and 100,000 women are affected each year.i While these women are fortunate in that they have survived, they are often ostracized by their communities and shunned by their families. Left untreated, obstetric fistula leaves women incontinent, unable to have children, and at risk of developing kidney disease and other chronic health issues. Obstetric fistula causes 8% of global maternal deaths.ii
Background Information What is obstetric fistula? Obstetric fistula is an injury sustained during prolonged and obstructed labor and childbirth. Unattended obstructed labor can last up to seven days, though the fetus usually dies by the third day.iii Unattended obstructed labor can last up to seven days, though the fetus usually dies by the third day.iv Without prompt medical intervention, the prolonged pressure on the mother’s pelvic bone cuts off blood supply to the tissue inside the vagina, causing the tissue to die and creating a hole (fistula) between the vagina and bladder and/or rectum and vagina. The primary outcome of fistula is permanent incontinence, leaving the woman leaking urine and sometimes feces. Fistula carries with it a high probability of a stillbirth as well as future infertility. If not repaired, obstetric fistula can lead to other medical problems including kidney disease and ulcerations. Who is at risk? The World Health Organization estimates that, of the 136 million women who give birth each year, about 20 million experience a pregnancy-related illness or injury after childbirth.v There are currently 2 million women living with obstetric fistula with 50,000 – 100,000 new cases each year (i.e., 150 – 300 new cases every day).vi The development of obstetric fistula is directly related to obstructed labor, where the woman’s pelvis is too small to enable the baby to be delivered without help. Worldwide, obstructed labor occurs in an estimated 5% of live births, and accounts for 8% of maternal deaths.vii The highest rates of fistula occur in rural areas of sub-Saharan Africa and parts of Asia. There are almost no cases of fistula in developed countries; when they do occur, they are treated immediately. In developed countries a difficult labor that may become obstructed can be identified using a partograph (visual or graphical representation of the values or events of labor, such as cervical dilation, duration of contractions, fetal heart rate, duration of labor, among others), and a cesarean section can be performed. In resource-poor countries, lack of
skilled care before and after delivery, particularly during labor, lack of suitably equipped facilities or inability of women to access such facilities, or an inability to pay for necessary medical interventions places women in developing countries at higher risk of obstetric fistula. Adolescent girls are especially at risk for developing an obstetric fistula. The majority of cases occur in girls who are married young (under 15), have underdeveloped pelvises, are malnourished, and did not have access to family planning, prenatal care, or emergency obstetric care. In parts of sub-Saharan Africa and South Asia, where obstetric fistula is most common, women often marry and become pregnant as adolescents, before their pelvises have adequately developed for childbearing. In a recent assessment in nine African countries, most women seeking treatment for fistula were under 20 years of age, some as young as 13, and had developed fistula during their first deliveryviii. Undernourished and underweight girls are at even higher risk. How can fistula be prevented and treated? Prevention: ■ Poverty is the underlying cause of obstetric fistula, as it is associated with early marriage and childbirth, malnutrition, lack of access to medical care and the low status of women in many communities. ■ Two of the highest risk factors for developing fistula are early childbirth and closely spaced births. Access to family planning supports delaying first pregnancies so that the pelvis has time to develop to allow passage of the baby’s head and spacing subsequent births by at least two years. ■ Malnutrition can also stunt the growth of the pelvis, causing prolonged labor. Improving nutrition and ensuring that girls and women receive the same amount of food as do boys and men can prevent prolonged labor and the resulting fistulas. ■ Education is necessary on multiple levels. Women and their communities need to be informed about fistula and the dangers of prolonged labor so that they will seek help when complications first arise. Girls and women need to be educated and empowered to understand their options, both with respect to the prevention of fistula and where/how to seek treatment if they are already suffering. And finally, communities need to understand the true causes of fistula so that stigma within society can be reduced. ■ A crucial step in preventing any maternal mortality or morbidity, including fistula, is ensuring that all women have a skilled birth attendant during childbirth and timely access to emergency obstetric care. Many women in rural areas labor at home, without a skilled attendant. By the time they realize they need to seek help it is already too late. A skilled attendant using a partograph can identify obstructed labor early, and will be able to either intervene or refer the woman for appropriate care, such as cesarean section or assisted delivery. These services must be available at an affordable cost. ■ A final step in preventing obstetric fistula is ensuring that, when complications develop, emergency obstetric care is easily accessible.
Treatment: A simple reconstructive surgical procedure can repair over 90% of fistulas.ix While the surgery is straightforward, few surgeons specialize in fistula repair in the countries with the most cases. (In the most serious cases, a small percentage of women will remain incontinent even after the surgical repair.) However, poor women living in remote rural areas may not be able to reach the hospitals that offer surgical repair. The average cost of fistula repair, including the surgery, post-operative care, and rehabilitation support, is around $300. This is far beyond the means of most women currently living with fistula.x While many countries are instituting free fistula repair, there are associated costs that prevent women from seeking treatment. Depending on the country, these associated costs can include transportation to the hospital, meals, medication costs, lost wages, and the inability to care for other family members at home while in the hospital. What are some of the social issues surrounding fistula? Social causes underlie many aspects of fistula formation. Most fistula occur among women living in poverty in traditional cultures. Poverty and gender inequality may leave them undernourished, uneducated, and married and pregnant at young ages. The low status of women may impede their ability to access health care, including antenatal care, skilled attendants at delivery, and family planning to delay or space pregnancies. The odor (from leaking urine and feces) and feelings of shame keep women with fistula isolated and in many cases prevent them from receiving treatment. Since fistula is not widely talked about in many communities, there are often mistaken ideas about what causes fistula. Women living with fistula may be blamed for their condition or seen as being punished for some "wrongdoing." There are many traditional interpretations of fistula. Sometimes it is believed that women with fistula are “cursed” and many women with fistula are mistakenly thought to have contracted sexually transmitted infections or committed adultery. For these women, social status may depend largely on their ability to bear large families. When these women fail to deliver live children, and go on to develop obstetric fistula, they are often rejected by their husbands, ostracized by their families and shunned by their communities. They also may be at a higher risk for suicide.xi In India and Pakistan, 70-90% of women with fistula had been abandoned or divorcedxii, and at the Addis Ababa Fistula Hospital, one in five women had resorted to begging for food to survivexiii. What are some of the policy issues concerning fistula? Obstetric fistula is emblematic of the lack of maternal care that exists in many developing countries. The factors that lead to obstetric fistula are the same as those leading to maternal mortality, and thus preventative strategies for one will affect the other. The long term goals of fistula prevention policies should includexiv: ■
Ensure each girl’s and woman’s right to health, including reproductive rights, are recognized and protected;
Prevent women from developing fistula through health promotion and awareness, and the development of high-quality basic and comprehensive maternal health services, available to all; Ensure that women living with fistula have easy and early access to skilled professionals able to repair simple fistula, and/or refer more complex cases to capable colleagues.
Specifically, developing countries need a greater number of skilled birth attendants who can identify prolonged labor and intervene, better access to emergency obstetric care, reliable access to transportation between rural areas and hospitals, and more money invested in women’s health. Delaying marriage, longer birth spacing, and better nutrition will decrease the incidence of obstetric fistula. A social information and awareness campaign is also needed to reduce stigma and to inform women living with fistula and their communities that they are not alone or “cursed” and that treatment is available.
The video module includes: ■ ■ ■ ■
Interview with a women with fistula, Bangladesh Interview and footage of Agnes, a woman living with fistula for a decade,Tanzania Interview with Rahel, a nurse at the government dispensary who refers Agnes to the regional hospital for consultation and repair surgery, Tanzania Interview with Christine Matovu, Executive Director, Women's Dignity Project, an organization dedicated to fighting for better access to health care for women and girls, Tanzania Interview with Anika Rahman, President of Americans for United Nations Population Fund, United States
Discussion Guide Opening Questions ■ ■ ■
What is your initial reaction to the video? If you could talk to anyone in the video, who would it be? What would you say? What is your impression of Agnes and her situation?
Fistula Questions ■ ■ ■ ■ ■ ■
What is obstetric fistula? Why does fistula occur? What happens to a woman with fistula? Physically? Emotionally? Can fistula be treated? How? What are the impediments to treatment for a woman like Agnes? How can obstetric fistula be prevented? How is fistula related to maternal mortality?
Social Questions ■
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The film opens with a woman being interviewed on a hospital bed who says that it would be better to be dead than to live with fistula. Why do you think she feels that way? Do you think Agnes would agree? Why doesn't Agnes seek treatment earlier? How can healthcare workers help women living with fistula? How can healthcare workers help prevent fistula? How are women with fistula treated by their communities? Even though Tanzania has a free fistula repair program, it took Agnes 10 years to seek treatment—what were some of the reasons it took so long?
Activities 1) Millennium Development Goals & Fistula In 2000, the United Nations developed eight measurable goals to address poverty in the world; all 192 UN member states, including the United States, committed to reaching these by 2015. Goal 5 is to improve maternal health. Break the class into groups. Ask each group to find connections between at least three of the other Millennium Development Goals and obstetric fistula. Have the groups brainstorm possible actions that would address the Millennium Development Goals and help reduce obstetric fistula. ■ ■ ■ ■ ■
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Goal 1: Eradicate extreme poverty and hunger Goal 2: Achieve universal primary education Goal 3: Promote gender equality and empower women Goal 4: Reduce child mortality Goal 5: Improve maternal health o Target 5a: Reduce by three quarters the maternal mortality ratio o Target 5b: Achieve, by 2015, universal access to reproductive health Goal 6: Combat HIV/AIDS, malaria and other diseases Goal 7: Ensure environmental sustainability Goal 8:Develop a global partnership for development
2) Social, Structural, Economic Barriers As a group, brainstorm a list of some of the problems that governments, organizations, and healthcare workers encounter in trying to prevent and treat fistula. Once a list has been created, break the class into small groups and have them discuss if the barriers are political, legal, cultural, clinical, or something else. Have them come up with possible solutions to the problems. Example list:
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Healthcare worker shortage Long distances to hospitals Poverty Lack of prenatal care Ignorance of issues (not many people know about fistula, how it occurs, and is treated) Stigma Gender inequality Lack of education Lack of family planning Teen pregnancy
United Nations Population Fund. A Tragic Failure to Deliver Maternal Care. http://www.unfpa.org/public/home/mothers/pid/4386 Last Accessed 1/14/2011 ii World Health Organization. 10 Facts on Obstetric Fistula. March 2010. http://www.who.int/features/factfiles/obstetric_fistula/en/ Last Accessed 1/14/2011 iii UNFPA: Campaign to End Fistula. Frequently Asked Questions. http://www.endfistula.org/q_a.htm Last Accessed 1/14/2011 iv UNFPA: Campaign to End Fistula. Frequently Asked Questions. http://www.endfistula.org/q_a.htm Last Accessed 1/14/2011 v World Health Organization, 10 Facts on Maternal Health. September 2010. http://www.who.int/features/factfiles/maternal_health/en/index.html vi World Health Organization. 10 Facts on Obstetric Fistula. March 2010. http://www.who.int/features/factfiles/obstetric_fistula/en/ Last Accessed 1/14/2011 vii WHO analysis of causes of maternal deaths: a systematic review. K.S. Khan and al. Lancet 2006; 367: 1066-74 viii UNFPA and EngenderHealth. Obstetric fistula needs assessment report: Findings from 9 African countries. UNFPA and Engender Health: New York. 2003. ix UNFPA: Campaign to End Fistula. Fistula Can be Surgically Repaired. http://www.endfistula.org/surgical_repair.htm Last Accessed 1/14/2011 x UNFPA: Campaign to End Fistula. Frequently Asked Questions. http://www.endfistula.org/q_a.htm Last Accessed 1/14/2011 xi World Health Organization. Mental Health Aspects of Women’s Reproductive Health: A Global Review of the Literature. 2009. P.91 xii Cottingham J, Royston E. Obstetric fistula: A review of available information. World Health Organization, Geneva, 1991. xiii
Wall, LL et al. Urinary incontinence in the developing world: The obstetric fistula. Proceedings of the Second International Consultation on Urinary Incontinence, Paris, July 1-3, 2001. Committee on Urinary Incontinence in the Developing World, pp. 1-67. www.wfmic.org/chap12.pdf. xiv World Health Organization. Obstetric Fistula: Guiding principles for clinical management and programme development. WHO Press: Geneva, Switzerland 2006