Global Health Council - Untreated Fistula: A Condition of Shame and Shunning

Global Health Council

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Notes from the Field> Untreated Fistula: A Condition of Shame and Shunning

Anuradha Naidu
France Donnay, MD
United Nations Population Fund (UNFPA)

In many developing countries, when a girl first menstruates, she is eligible for marriage and is expected to get pregnant soon afterwards. She will be of small stature, due to her young age, gender-based malnutrition, or just genetics -- all factors that vary by region. Her pelvis is usually too small for her baby to be delivered without assistance, and if obstructed labor occurs, it is imperative that help is sought, and that the baby is delivered via caesarean section (C-section).

However, in many cases, it is her husband or in-laws who decide whether she may seek emergency obstetric care (EmOC). In cultures where tradition dictates that young women should deliver at home alone, the decision to seek EmOC often occurs too late, if at all.

Unattended, obstructed labor can last for up to seven days. During this time, the pressure of the baby's skull cuts off the blood supply to the tissue surrounding the mother's bladder, rectum and vagina, causing a hole, or "fistula" to form. It is almost certain that this will result in a stillbirth.

Soon after, the effects of the fistula will be noticed. The results are devastating. Girls are unable to stay dry because they are constantly leaking urine and/or feces. In areas where a woman's status depends on her ability to bear healthy children, rather than being comforted for the loss of a child, she is often rejected by her husband, shunned by her community, and blamed for her condition. If her family doesn't reject her, her community may ostracize her because she is considered unclean.

Although most women afflicted are young, older women can be affected as well. Their fate varies: some women learn a trade and are able to make a living, while others become commercial sex workers or are left abandoned to fend for themselves.

Some women feel that having a fistula is a fate worse than death. One African woman said: "It's better to be blind than to have a fistula. At least people will help you." The effects cause sufferers to keep themselves hidden, making any effort to quantify the problem extremely difficult. Prevalence is believed to be highest in impoverished communities of sub-Saharan Africa and parts of Asia. Still, based solely on the number of women who are able to seek treatment, the World Health Organization estimates that 2 million women are living with fistula worldwide, and that an additional 50,000-100,000 new cases occur each year.¹

In June of 2003, UNFPA (the United Nations Population Fund) and EngenderHealth presented the results of the first attempt to "map" global fistula and the capacity of hospitals in nine sub-Saharan African nations.² The country examples illustrated here have fueled efforts to further investigate the severity of fistula in other countries and to develop programs to eradicate it.

Preventing the Tragedy
Once common throughout the world, fistula has been eradicated in the industrialized nations of Europe and North America through improved obstetric care. In New York in 1850, the first fistula hospital in the world was established in a building, which is now the famous Waldorf Astoria hotel. By 1859, because of improved medical technology and transportation in the United States, fistula ceased to be a problem, and the hospital closed down.

Obstetric fistula is caused by a combination of factors: early childbearing, poverty, malnutrition, lack of education, and limited access to EmOC. In some communities in Nigeria, girls marry young because it is taboo to reach menarche in their own house. In places where fistula is uncommon, early marriage is discouraged, young women are educated, and skilled medical care is provided during childbirth.

In 2002, UNFPA took the lead in spearheading a response to this widespread problem by launching the first campaign to end fistula in Africa and Asia. Primary prevention efforts include: raising awareness about fistula and how it occurs; influencing policy makers to increase the legal age of marriage; and, increasing opportunities for women outside of early marriage and childbearing. Although changing policies and laws may take a long time to have a visible effect on societies, raising awareness among families, community members and religious leaders can have a more immediate effect.

There are many ways to address prevention by making use of services already in existence. For example, in many countries, women receive pre-natal care. In Mali, approximately 91 percent of pregnant women go for at least one pre-natal visit. These visits can be capitalized upon by providing women and their families with information on the potential dangers of childbearing, and the importance of EmOC if such occasions arise.

Immediate prevention efforts include early detection of complications and transporting women to facilities where they can receive EmOC. However, in many cultural practices, a woman is not a "real woman" unless she gives birth at home. Moreover, transportation to these services is inconsistent and may be financially out of reach, if available at all. Availability and accessibility are complicated by the inequities in gender relations. In Malawi, bicycle-ambulances have been used in an effort to relieve dependencies on motorized transportation, which is scarce. However, most often, women are forbidden to travel by bicycle, even if it is an ambulance, when a man is driving it.

In many countries, women may go to fraudulent traditional healers. Oftentimes, women are misinformed by being told that their obstructed labors are due to "a curse" or their infidelities. According to these healers, a cure would entail the couple screaming the names of previous sexual partners. Unsafe delivery practices are also promoted such as drinking water while in labor (which is conducive for fistula, since the bladder will be full while the woman is in labor) or violently shaking her. One 17-year-old girl in Tanzania reported that she was beaten in order to alleviate her prolonged labor and expedite the delivery. Not only did she end up with a fistula, but a ruptured uterus as well. Therefore, targeting cultural practices that may prevent decisions to seek appropriate medical care is crucial.

Delivering a child by C-section can avert fistula. In Mozambique, although the estimated prevalence of fistula is high, only 1.2 percent of women receive C-section deliveries during complications. Therefore, more education is needed to raise awareness that C-sections not only prevent fistulas, but also increase the chances that the baby will be born alive. Further, more doctors must be willing and trained to perform C-sections and facilities must be equipped to provide them.

However, thus far, in many places evidence has shown that EmOC is difficult to find, access and pay for. If they are available, accessible and affordable, finding adequately trained staff may be difficult. Therefore, detecting complications early and getting quality, affordable EmOC from appropriately trained staff is imperative.

Available Treatment
Surgical repairs of fistula, if done properly, are successful 88-93 percent of the time. The cost of surgery ranges from U.S. $100-400, but is unfortunately simply out of reach for many families. Even when women are able to raise the funds, there are relatively few facilities that are both equipped and staffed by adequately trained practitioners. Attentive post-operative care, for a minimum of 10-14 days, is critical to prevent infection after surgery. Education and counseling are also needed to help restore the young woman's self esteem and allow her to reintegrate into her community once she is healed.

Many women who have had their fistulas repaired are able to return to their families and resume a normal life. After surgical repair, it is entirely possible to get pregnant again and deliver a healthy baby if C-section deliveries are performed thereafter, and many of them do. These women bring important messages back to their villages. They are living illustrations of the potential costs of early pregnancy and unattended obstructed labor. They become a resource for other women with fistula. Interviews with fistula survivors serve as an informative replacement for the data used in maternal mortality research.

Fistula repairs are available at a number of government, private and mission hospitals in Africa. In Addis Ababa, Ethiopia, Drs. Reginald and Catherine Hamlin, two missionary physicians from Australia, established a hospital specifically for the surgical repair of obstetric fistula. Since 1974, more than 20,000 women have been served. Through outreach activities, this pioneering hospital has gone to many different countries to train surgeons. In Tanzania, the NGO, The Women's Dignity Project, specifically advocates to create policies and provide health services, that address fistula. Annually, thousands of girls travel for days in hopes of receiving treatment, which includes surgical repair, post-operative care, and rehabilitation. Those who are able to become pregnant again are instructed to return for C-section deliveries.

The Way Forward
After developing the International Working Group for the Prevention & Treatment of Obstetric Fistula three years ago, UNFPA has seen significant advancements in the fight to mend the torn lives of girls and women who are affected by this horrible condition.

UNFPA is supporting needs assessments in 12 additional countries. Countries included are sub-Saharan African countries: Ethiopia, Ghana, Senegal, Eritrea, Togo, Rwanda and Somalia. Asian and Arab countries included are Bangladesh, Djibouti, Pakistan, Sudan and Yemen.

More specifically, UNFPA has begun implementing programs addressing fistula in Chad, Uganda and Niger. In Chad over the past year, due to strong political will, legislation has been passed to increase the age of marriage. The UNFPA office in Chad has further assessed the magnitude of fistula cases at health facilities and the perceptions of the community with respect to prevention and treatment. Through UNFPA's support, more than 150 women received reparative surgery. After surgery, they were given seed money to start small income-generating activities to help them resume their lives with dignity. Projects have been initiated to raise awareness about fistula and create strategies to address it. Thus far, surgeons in Chad have received specialized training from the surgical team from the Hamlin Hospital in Ethiopia. This exchange of training has been a very beneficial alternative to using solely expatriate surgeons for treating fistula. Capacity building activities such as identifying hospitals to be used as fistula centers, then equipping them and training staff has begun in N'Djamena.

The issue of fistula encompasses health, gender, rights and equity. Therefore, it can be used as a gauge of gender and reproductive health status, making fistula eradication a strategy for poverty reduction. Preventing and treating fistula and reintegrating women into society can expand labor markets, therefore increasing the number of income-generating women and helping to alleviate poverty.

Women deserve the right to live in dignity and give birth safely. Successful efforts to mobilize resources have been integral in accomplishing goals thus far. Some bilateral agencies and private foundations have already committed resources. However, more funding is needed.

Fistula is a preventable and treatable condition. No young woman should suffer in silence, unaware that a cure is available.

References
¹ Murray, C and Lopez, A. (1998) Health Dimensions of Sex and Reproduction (Geneva:WHO).
² UNFPA and EngenderHealth (2003) Obstetric Fistula; Needs Assessment Report: Findings from Nine African Countries. Countries included are Benin, Chad, Malawi, Mali, Mozambique, Niger, Nigeria, Uganda, and Zambia.
For more information about UNFPA or fistula, visit http://www.unfpa.org

The Three Delays

Fistulas tend to occur as a result of three classic delays:

A delay in the decision to seek medical care

A delay in reaching a health-care facility

A delay in reaching emergency obstetric care at the facility

United Nations Population Fund (UNFPA)

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