(March 2004) Martina Nakamya (not her real name) was having her first baby after having left school at age 16 because of her pregnancy. Preparations were made with the birth attendant in the village. Nakamya’s labor lasted almost four days. When she finally pushed the baby out, it was dead, and Nakamya was not well. She “leaked” and smelled of urine and feces all day, everyday.
The teenager had obstetric fistulas. This preventable and treatable condition occurs when a girl or woman has an obstructed labor and does not get a Caesarean section when she needs it. The obstruction may occur because the mother’s pelvis is too small, the baby is badly positioned, or its head too big. The protracted labor threatens the life of both baby and mother. If the mother lives, the pressure by the baby against the woman’s pelvis may have damaged the soft tissues around her bladder, vagina, and rectum and caused holes, or fistulas, to develop. If the fistula is between her vagina and bladder (vesico-vaginal), she has urine leakage, and if it is between her vagina and rectum (recto-vaginal), she is unable to control her bowel movement.
Most fistula patients in Uganda, like those in other countries, are young and poor with little education and limited access to quality health care, including emergency obstetric care, according to the 2003 Baseline Assessment of Obstetric Fistula in Uganda. Often, patients lack the knowledge that the condition can be repaired and are too ashamed of their condition to seek help. Those who remain untreated may be shunned by their communities and relatives and must find new ways to support themselves.
“I lived in shame,” says Nakamya. “I was now out of school, and even my family blamed me for the pregnancy. They said I was paying for my sins.”
Childbearing poses many risks in Uganda, a largely rural country of 25 million people where the average number of children per woman is almost 7.Trained medical professionals assist an estimated four in 10 births, and roughly 500 women die of childbirth-related complications for every 100,000 live births, according to the 2000/01Uganda Demographic and Health Survey (UDHS). Although some 98 percent of pregnant women receive some level of antenatal care, the survey shows that only 42 percent make the four or more visits recommended by the health ministry. Infant and child deaths are also high. For every 1,000 live births, 88 children die before age 1 and 152 die before age 5.
With little access to health care and information about these kinds of risks, young people begin sexual activity and childbearing at an early age. More than half the population (52 percent) is below age 15, and 23 percent of women surveyed at ages 20 to 49 said that by age 15 they were already sexually active, according to the 2000/2001 UDHS. The median age at first sexual intercourse for women ages 20 to 49 was 17 years. The UDHS also showed that some 31 percent of teenagers had begun childbearing, an improvement over the 43 percent shown in the 1995 UDHS.
Early marriages, linked to social and religious customs among certain tribes, contribute to the high number of teenage pregnancies, since young brides become mothers soon after marriage. Although the minimum legal age for a woman to get married in Uganda is 18, the latest UDHS shows that 17 percent of women ages 20 to 49 at the time of the survey were married by the time they were 15, and more than half were married by age 18.
The 18-year-old civil war in northern and northeastern Uganda between Lords Resistance Army (LRA) rebels and government forces has also contributed to an increase in the number of child mothers. The United Nations Children’s Fund estimates that LRA rebels have abducted over 10,000 children in the last 10 years, a large number of whom are girls. Girls are extremely vulnerable to sexual violence and abuse, and, generally at the age of 12 or 13, are forced to become the “wives” of rebel commanders.
Constraints in Treating Fistula Patients
UN agencies estimate that obstetric fistula affects 50,000 to 100,000 women every year, mainly in sub-Saharan Africa. However, largely because of stigma, reliable data on the condition are hard to come by.
“Fistula is a shameful thing. Very few women declare that they have the problem,” says Rose Achayo, a midwife at a Kampala hospital. “That is why it is quite difficult to know the number of women who suffer the ailment.”
Other factors make it difficult to estimate the magnitude of the problem in Uganda. Poor knowledge of the causes and treatment of fistula within communities, long distances to health facilities, and inability to pay for services all result in limited use of the services that do exist. The knowledge that hospitals have only limited ability to treat women with fistulas also keeps patients away.
“Because nothing or little is currently done for fistula patients, they tend to keep away from the hospitals and stay in the communities, where it is difficult to identify them,” says Dr. Apollo Karugaba, who conducted the Baseline Assessment on Obstetric Fistula in 23 Ugandan hospitals around the country.
That 2003 assessment highlighted a number of constraints that hospitals face in attempting to treat women with the condition. The report cited inadequate skills among health workers as well as a lack of equipment, medication, and other supplies. Many of the doctors interviewed agreed they lacked the confidence and skills necessary to perform fistula repairs. Nursing staff cited a shortage of nurses, pointing out that one nurse would be expected to look after 70 or more patients.
The 23 hospitals recorded 416 cases of fistula in 2002. Although every referral hospital had at least one resident gynecologist, only four had special training or skills to repair fistulas. Most of the hospitals relied on visiting expatriate surgeons who come twice a year for several weeks at a time.
The largest hospital, Mulago, has four operating rooms and more than 15 gynecologists and 20 surgeons. However, while the gynecological outpatient clinic reported some 33 cases of fistula, only nine were repaired. The Rubaga and Mengo missionary hospitals said few, if any, fistula patients were treated or seen as outpatients. The main reason was that the fistula patients were too poor to afford the hospital’s bills.
A fistula repair averages some 300,000 Uganda shillings (US$150), a price that is beyond the reach of most patients. Even the 40,000 shillings (US$20) that rural hospitals charge is too high for many people. Patients complain that even when the treatment is free, they incur expenses in the form of gifts to “motivate” medical personnel.
The Uganda Ministry of Health has highlighted efforts to reduce maternal and infant morbidity and mortality. The ministry’s Annual Health Sector Performance Report 2001-2002 focuses on the need to address maternity-related care, antenatal and postpartum care, basic and emergency obstetric care, the sexual and reproductive health needs of adolescents, and health information and education.
The Ministry’s five-year Health Sector Strategic Plan (2000-2005) also stresses sexual and reproductive health and rights as part of a priority program. Among the national targets are plans to:
- Increase skilled assistance during the delivery of babies from 38 percent to 50 percent.
- Lower the total fertility rate from 7 children per woman to 5.
- Provide adolescents with appropriate, accessible, and affordable health services.
- Reduce maternal mortality ratios by 30 percent (from 506 to 345 per 100,000 live births).
- Increase modern contraceptive use rates from 15 percent to at least 30 percent.
“The aim of sexual and reproductive health interventions in Uganda is to contribute to the improvement of the quality of life of the people of Uganda through increased utilization of sexual and reproductive health services,” says Minister of Health Jim Muhwezi in his Health Policy Statement 2003-2004.
He says resources are being directed to increasing antenatal visits from one to four, increasing the percentage of deliveries taking place at health facilities, improving access to essential obstetric care, and increasing the use of modern contraception. The Ministry aims to decentralize and upgrade health centers by training doctors and giving them incentives to live and work in remote areas, equipping and maintaining operating theaters, and acquiring emergency transport services.
Other Prevention Efforts
In an effort to prevent and treat the condition worldwide, UNFPA is spearheading a global campaign whose partners include governments, health care providers, and organizations such as EngenderHealth, Columbia University’s Averting Maternal Death and Disability Program, the International Federation of Gynecology and Obstetrics, the International Confederation of Midwives, and the World Health Organization (WHO).
As part of a 1999 pilot project in three districts in Uganda, UNFPA supported the training of traditional birth attendants to help them understand signs of complications in labor and supplied two-way radios to initiate communication between the birth attendants and the closest health unit. The agency also donated transportation in the form of small jeeps.
More recently, UNFPA and EngenderHealth have collaborated with the health ministry and other sectors to conduct a needs assessment of health facilities. A number of recommendations are included in the 2003 assessment:
- Use antenatal care visits to discuss plans for delivery and explain labor complications, including what fistula is and how the condition can be prevented.
- Include family planning messages in the regular care of fistula patients.
- Seek ways to keep local doctors interested in fistula repair and make services sustainable. The team found that the nature of the surgery, the fact that most clients cannot pay, as well as scarce equipment and low salaries combine to make fistula an area of low interest for physicians.
- Explore the feasibility of training interested medical officers to perform basic fistula repair. The team found that medical officers are in far greater supply than specialists and may be more inclined to remain in remote locations.
- Conduct needs assessments at the community level to examine the lives of women with fistulas and how these women can be reintegrated into the community once their fistulas have been repaired.
- Use the findings to train nurses and social workers to more adequately care for these women.
- Consider setting up a training center for fistula repair.
Work on fistula is ongoing in other areas. Visiting doctors from the African Medical and Research Foundation (AMREF) as well as retired surgeons from Britain travel to Uganda on a voluntary basis to assist with fistula repair and training. Announcements of their arrival are made on local radio stations. AMREF’s doctors fly in to operate in three hospitals in an arrangement known as “VVF week,” a reference to vesico-vaginal fistulas.
Nsambya Catholic Missionary hospital also holds “VVF week,” a joint effort by the hospital and British physician Dr. Brian Hankook to offer free treatment to fistula patients. The surgeon also provides hands-on training in fistula repair to two gynecologists at the hospital.
Evelyn Kiapi Matsamura is a journalist based in Kampala, Uganda.
Apollo Karugaba, Baseline Assessment of Obstetric Fistula in Uganda (Kampala, Uganda: United Nations Population Fund Uganda, February 2003).
Jim Muhwezi, “Health Policy Statement 2003-2004″(Kampala, Uganda: Ministry of Health).
The Prevention and Treatment of Obstetric Fistula, Report of a Technical Working Group (Geneva: World Health Organization, Division of Family Health, April 1989).
Uganda Bureau of Statistics, 2002 Population & Housing Census, accessed online at www.ubos.org/, on March 8, 2004.
Uganda Bureau of Statistics (UBOS) and ORC Macro, Uganda Demographic and Health Survey 2000-2001 (Calverton, Maryland: UBOS and ORC Macro, 2001).
Uganda Ministry of Health, Annual Health Sector Performance Report: Financial Year 2001/2002 (Kampala, Uganda: Ministry of Health, 2001).
Uganda Ministry of Health, Health Sector Strategic Plan 2000/01-2004/05, accessed online at www.health.go.ug/docs/HSSPfinalEdition.pdf, on March 8, 2004.
United Nations Children’s Fund (UNICEF), “UNICEF Expresses Alarm Over the Fate of Captive Children,” accessed online at www.unicef.org/media/media_18906.html, on March 8, 2004.
United Nations Population Fund (UNFPA) and EngenderHealth, Obstetric Fistula Needs Assessment Report: Findings From Nine Countries (New York: UNFPA and EngenderHealth, 2003).
UNFPA and the Uganda Population Secretariat, State of Uganda Population Report 2003, “Challenges on the Path to Quality Life” (Kampala, Uganda: UNFPA and the Uganda Population Secretariat, 2003).
World Health Organization (WHO) and Uganda Ministry of Health, Uganda Safe Motherhood Programme Costing Study (Geneva: WHO and Uganda Ministry of Health, 1996).