Fistula healing goes beyond surgery

Jul 24, 2017

“When my parents found out that I was pregnant, they became cruel and sent me to my boyfriend. His parents received me with insults," says Naggayi

Recently, Uganda commemorated Fistula, a condition that mostly arises from child birth complications. And today, Caroline Ariba talks to survivors, before and after surgery and looks to experts for solutions.

It was a Caesarean birth. Wait, a still birth! The baby did not make it, but Teddy Nagayi did. And oh how she wished she hadn't. Death would have been kinder; the world on the other hand is rude, cold, unloving. Nine months of carrying her baby, the teenager had walked away with an obstetric fistula. Not the baby, a fistula! It would soon become her crime, her burden and the punishment was the very worst; rejection.  The 18 year old lost her identity; she became the girl with urine.

The senisitisation on fistula has seen many people come up to assist those affected

Bundled on a bed in Mulago hospital, Nagayi shifts restlessly. She doesn't like it that people are getting closer, the guilt in her eyes shows. She keeps raising her thighs to feel the bedsheets, her worry that the urine might have passed through is evident. But even as her tear-filled eyes close shut, one thing is clear; Nagayi would rather stay in Mulago Hospital for good.

The 18 year old doesn't want to go home, definitely not there. Not Bukomero Village, in Bukomero district, where she is born and bred, not there! Home is pain; home is rejection, a place she is not welcome. At least in Mulago, she is the patient, better that than the outcast.

Her story

 It all started a year ago, only 17 years old then, Naggayi got pregnant.

 "When my parents discovered that I was pregnant, they became cruel and sent me to my boyfriend," she begins. "My boyfriend's parents received me with insults; and I was mistreated." And contrary to what her boyfriend told her when they had just started dating, he beat her to a pulp. "He told me when we were dating that he would die for me, he lied to me," the teenager recalls. She started to fear him and seldom spoke to him.

So the day labour struck, she dared not tell him anything, lest he beat her up. "I feared that he would beat me, so I did not tell him that I was in labour," she confesses. It took tears streaming down her face for her violent lover to notice trouble and quickly rush her to a clinic.  "It was too late, I had delayed," she whispers regretfully. Her situation was delicate and the nurses quickly referred her to Mulago hospital.

The baby's head got stuck and tore her, and yet still wound up being operated out of her. "My baby died," she goes silent. Almost inaudibly, she adds; "died". But she noticed something else; lots of fluid, mostly urine flowing out of her. But Nagayi feared to talk, she dared not talk, after all, who would have cared to listen?


"I thought it was as a result of operation and that it would heal before leaving the hospital," she recalls. Just before she was discharged, the midwives noticed the fistula and asked that she return three months later. Afraid of what her boyfriend might do to her for leaking urine, Nagayi went to her parent's home. She wasn't welcome, in fact; she was chased back to her abusive boyfriend.

She was not welcome there either, they blamed her for the death of the baby and called her offensive urine-related names and chased her back to her parents. "While my parents were still angry with me for having conceived at an early age, my parents-in-law including my boyfriend said I was weak and disabled and, therefore, they couldn't marry me," she whispers through her quivery lips. "I returned and told my mother that I was prepared to die but not from another home," she says. Though her mother took her back, she was cold, and starved her daughter while blaming her for conceiving for an irresponsible man.

Her mother detested her so much that she tricked her into returning to Mulago hospital.  "She told me that we are going to visit one of my aunties at the cancer ward, upon reaching there, she disappeared," again her voice drops to a whisper.

She goes silent for a while, and then mumbles a few words; "She left me there, she abandoned me." Every day and night, she cried herself hoarse and was a lucky a nurse noticed. And when The Association for Re-Orientation and Rehabilitation of Teso Women for Development (TERREWODE) came to bring some Fistula women for surgery, they took her in.

For now, Nagayi has dreams, but she put them on hold, she dares not dream, not now. "I want this thing to go, this urine to dry, I want to be a person again," she tells of the fistula that rid her of the right to freely associate. "My life is on hold, I have to wait until this thing goes away."



Speaking to New Vision during a recent fistula camp at Arua Regional Referal hospital, Jessica Asikuru, a midwife at the hospital, said the commonest fistula among women is the Vesico-Vaginal fistula (VVF).  "This is a tear that occurs during childbirth between the vaginal and the bladder," she explains. She said that that tear causes one's bladder to leak urine uncontrollably, and leaves its victims a centre of ridicule and can only be corrected with surgery.

Even though surgery will start the process, Alice Emasu, founder of TERREWODE, an organisation that rehabilitates victims of fistula, says that Nagayi's healing process would have just begun.  "To understand the healing process, it would be nice to find someone that has gone through the whole process," she says.

True, Alice Agwang, a lady whose story Her Vision run about two years ago, was our go-to for the contrast. Having battled Fistula herself and known utmost rejection from her community in Mukura Sub-county in Ngora district, she would explain better. She is a different Agwang, more optimistic, chatty even. She speaks of the ‘Amoritan' Fistula Solidarity Group (FSG), a brain child of TEREWODE, is also her ‘baby'.

Together with the survivors, Agwang rears goats and is overjoyed with the latest birth in their little farm, Bonnie. The male goat is named, Emasu, after Alice Emasu, and little Bonnie is named after Bonnie Ruder, who is TERREWODE's voice in the United States. The farm has more interesting names such as, Mama T and Stella, which are the source of milk.

Stella produces about 2.5 litres of milk every day and Mama T follows with 2 litres every day. "I didn't even know people can consume goat's milk!" she said. "It is so sweet. Better than cow's milk." Interestingly though, the milk is primarily for soap-making, which really is their project.

She might not say much, but Agwang is different. The burden is gone, and her face is brighter!  "I am happy, I am very happy!" Agwang says. "I did not know I would have such a skin," she says. She pauses and then adds; "I don't have urine to worry about; my only worry now is making sure our projects are successful."

However, the healing process she says began with reconciliation and forgiveness. "I had to forgive the people who rejected me, before anything else, I had to do that first," she says. She also recalls that after battling fistula for years and being unable to do any economic activity, many of the women need help to recover.


Experts' view

On the 23rd June, Uganda commemorated the national fistula day, in Mbarara district and the theme was ‘Hope, healing, and dignity for all'. Alain Sibenaler, the United Nations Population Fund (UNFPA) representative, called for the realization of the fundamental human rights of all women and girls.

He said that fistula can be ended. "Fistula has been virtually eliminated in the world's wealthier countries, so we know that it can be eliminated in every country," he said.  "Strong health systems and greater efforts to address the underlying issues that perpetuate it, including poverty, gender inequality, early marriage and childbearing, and lack of education, are crucial."

Globally, UNFPA reports that there are approximately 3.5 million cases of fistula with up to 100,000 new cases annually. Sadly, most of these are in Sub-Saharan Africa and Asia. In Uganda, UNFPA reports that 1,900 new cases of fistula are still occurring in this country every year, with only 2000 repairs are done every year.

 "This is a very small number compared to the 200.000 women that are battling the condition," Alice Emasu said. She argued that to end fistula, tens of thousands of repairs have to be done real soon. "If you already had 200.000 women that need repairs, and another 1900 every year coming up, 2000 is not even 10%," Emasu lamented.

UNFPA's Sibenaler also reckoned that the backlog was overwhelming. "We also acknowledge that much more needs to be done to clear the backlog of nearly 140,000 cases, and also to prevent more cases from happening," he said. 

At a time when State Minister of Primary Health Care, Sarah Opendi, tells of just 25 fistula surgeons in the country, will this backlog ever be solved? Note that of the 25 surgeons, 13 are in the regional hospitals, 7 in the not for profit health centers and the 5 are mobile.  Emasu insists that the solution to this lies is in prevention.  "We need prevention programs on ground," she begins. "Then we can talk about the surgery, the counseling, the economic empowerment." 

Peter Kivunike Mukasa, the Technical Specialist and advisor on fistula prevention and management at the health ministry however says that government reckons this. "We are using a bottom-up approach, ensuring that Fistula gets attention right from the sub-county to the district levels," he says. "Using the village health trainers, we are identifying pregnant mothers and monitoring them even after delivery."

He says that though bundled together as a comprehensive reproductive health package, Fistula is definitely high on the agenda. "Fistula is mostly caused by delays in seeking expert help, and that is what we are working to reduce with the help of our VHTs," he says. "But we are also going to use the VHTs to sensitize the community about the fistula in general."

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