After giving birth five times, all Amina Bello is left with is a fistula, an abnormal opening between her vagina and bladder which leaves her the victim of stigma and shame despite the condition's prevalence in Nigeria.
Bello’s babies were all stillborn. The young woman is not sure how old she is. A nurse at the clinic where she is awaiting surgery says she is probably about 20 years old.
Just over four feet tall, Bello still resembles the child she was when she got married. She was 8 years old, and her mother stood by her throughout her wedding ceremony. She and her mother still have a close relationship. It was her mother, informed by a doctor in a small town village clinic, who first told Bello that she had a fistula a few years ago.
“My mother was very angry,” Bello says in Hausa, the lingua franca of northern Nigeria.
Bello’s fistula formed the same way most vesico vaginal fistulae form in women living in developing nations — prolonged or obstructed labor without prompt medical attention. Bello was in labor with her fifth child for three days. Her husband was poor — to earn money he drove a motorcycle, picking up passengers to drop them at nearby destinations. He could not afford to take his wife to the hospital, so he told her to deliver the baby at home. But the pains in her body became unbearable, and finally her and Bello’s mother took her to a clinic.
Bello said the nurses at the clinic simply offered her pain medications and told her to go back home. She delivered another stillborn baby at home.
The days of labor caused a fistula to develop. From then on, she had no control of the urine that leaked from her. Bello’s husband told her to return to her parents’ house. Though they no longer live together, she believes that he still loves her.
There are at least half a million women in Nigeria suffering from vesico vaginal fistula (VVF), according to the Ministry of Health — the highest number in the world.
Most women develop fistulas as a result of the same factors: giving birth without the assistance of a skilled birth attendant and early marriage. Most women who develop fistulas for these reasons are poor. An impoverished girl under the age of 18 has a higher risk of obstructed labor because they are often physically immature due to malnutrition, leaving the pelvis or birth canals not fully developed.
“We don’t have enough doctors to do the repair surgeries for these women and the women are so poor, they cannot afford to go to a doctor when they are in labor,” says Idowu Peters. Peters coordinates the federal government’s national VVF program.
There are only five doctors in Nigeria who are skilled enough to conduct fistula repair surgeries without supervision, Peter said. Those doctors have trained hundreds of health workers to assist them with the procedure, handling the pre- and post-surgery care, administering the anesthesia and other duties.
Fistulas are usually preventable if at-risk pregnant women receive medical attention, Peters said.
The United Nations, which estimates that 2 million women in Sub-Saharan Africa, Asia, the Arab region, Latin America and the Caribbean are living with fistula, says the conditions’ “persistence is a sign that health systems are failing to meet women’s essential needs.” About 50,000 to 100,000 new cases develop each year.
The Nigerian federal government helps to manage 14 VVF clinics where repair surgeries are performed. But the surgeries are costly for most of the women, running upwards of $750.
The federal government takes care of the cost for some of the women, having established a budget line within the Ministry of Health solely dedicated to VVF. There aren't available numbers on how many received free surgery, but Peters said there have been hundreds.
Peters is hoping to conduct a national survey to more accurately determine the number of women with fistulas. As many are too ashamed to visit a doctor, it could be higher than the Ministry of Health’s estimate of 500,000.
The figures quoted by international health organizations including Doctors Without Borders and the U.N. of the number of women in Nigeria living with fistula fall between 400,000 and 1 million.
According to the last study conducted by The Nigerian National Strategic Framework in 2008, about 6,000 fistula repairs are performed every year in Nigeria but more than 148,000 women were on the waiting list for surgery. Some of the VVF centers do not have enough beds or adequate electricity to operate.
“The money is just too small,” Peters said.
Some women forgo government hospitals, opting to receive care at the two private, faith-based VVF clinics. One is run by a Catholic mission in southern Nigeria and the other is an evangelical Christian facility in the northern city of Jos.
The VVF center at Evangel Hospital in the city of Jos has treated thousands of women since opening in 1992. Women flock to this bare-bones clinic, established by the Evangelical Church of West Africa, from all across Nigeria and neighboring countries.
More than two-dozen women, mostly teenagers or in the early 20’s are presently in the ward, either waiting for their repair surgeries or recovering from them. Here, they do not have to pay anything. The accommodation, surgery, and aftercare services are all free. The clinic is largely financially supported by non-profit organizations based outside of Nigeria.
Bello sits on her bed toward the back of the ward. A small cup with a tube collects her urine.
“Many people wonder how we work here because they say the place is always smelling of urine,” said Ladi Bulus, a secretary at the hospital, with a laugh. “But we are used to it!”
She has worked at Evangel’s VVF clinic for seven years. She said the patients often become her friends; the ward is lively. The staff makes a great effort to make the women feel relaxed and welcome.
“We take care of them. We show them care, when many of their friends and family have abandoned them,” Bulus said.
Rakiya Yakubu was 17 years old when she became pregnant for the first time. She was in labor for two days, and her baby was stillborn.
Her mother carried the infant home from the hospital and together they buried the baby in their backyard.
After that, Yakubu’s began leaking urine. One day, her husband handed her a letter. She couldn’t read it since she is illiterate, so she passed it to her cousin to read it out loud, in her husband’s presence.
“It was a divorce letter,” said Yakubu, who is now 45. “I was very sad. I wasn’t myself, but I didn’t beg him to stay because I saw he had already made up his mind.”
She went to stay with her parents, and still lives with them now.
After nearly three decades of living with a fistula, Yakubu has learned to manage the condition by wrapping tissue inside her underwear. But hers is worst than most — there is also a hole in her bowel, and she is leaking feces.
This is her third visit to Evangel — the previous surgeries to repair the fistula were unsuccessful. After several complications and 12 surgical procedures including a colostomy, she has bladder stones and is still leaking fluid.
“Now my feces is coming out through my stomach,” she says shaking her head. A tube from her intestines passes the waste out into a bucket attached to the bed.
Yet, Yakubu is cheerful, and the ward has become a place of comfort to her. She makes jokes and small talk with some of the younger woman in the ward who look up to her. Most of them cannot read or write, but they all share the same crippling poverty that led to their physical problems.
“Vesico Vaginal Fistula (VVF), as seen in this environment, is a major cause of severe morbidity and potential mortality, which can result in marital disruption, rejection and, eventual destitution,” states a 2011 report of a study that Evangel conducted.
Catherine Bala, the chaplain at the hospital, visits the women in their homes, offering spiritual support. “These women live in the most rural areas, she said. “They live so far, far away from any type of medical facility.”
