Attention please: What do you know about obstetric fistula?

There have been bitter experiences in Alice Emasu’s life that have left emotional scars. She does not want to talk about them and her voice goes a notch lower and the pain becomes evident in her eyes as she reminisces about her childhood.

Born in Soroti to a chief, life changed when her father died. “I have heard about the priviledged life we had when my father was still alive but it is hard for me to visualise.”

Her mother was inherited by an uncle and their family wealth grabbed by relatives. When her mother failed to sustain the second marriage, she returned to her parents’ home with her four daughters. “She begged her brothers to give her land to put up a hut,” says Emasu. “Mother had to dig in relative’s gardens in return for food.”

Later, with the help of her brother, Stephen Emasu, she was able to join secondary school in Masaka. This was at the beginning of the Teso insurgency in 1986. “There were six girls in our village that I envied because they went to good schools in Soroti and Lira towns. However, when I returned in my Senior Four vacation I could not find them. When I asked around, four of them had died.”

The girls, victims of early marriages, had died due to complications of labour. Emasu was so shocked that she did not ask about the other two – who had away run from the village – until later in her life when she discovered they were suffering from obstetric fistula.
“When I returned to school, I was traumatised. But I was determined to do something. I had asked the elders for answers but they had already accepted that it is normal for one to die in labour.” And what better platform to highlight the plight of rural girls than the media?

Seeking a platform
The journalist in Emasu is very much awake in the way she stresses every word. She also has an eye for detail. After her A-Level, Emasu joined the New Vision newspaper. “My first article was about the plight of rural women. I hardly wrote about anything else.”

In 1999, The Association for the Re-orientation and Rehabilitation of Teso Women for Development (TERREWODE) was formed to highlight the problem of obstetric fistula and catalyse discussions about it. It was also a vehicle to promote economic and productive rights of vulnerable women.

At the time, a lot of stigma surrounded obstetric fistula. A victim was shunned by her husband and relatives, because of the constant leakage of urine and faeces, leaving her an outcast.

Realising that stigmatisation was due to ignorance TERREWODE recruited a communication volunteer workforce to provide education about the disease. Emasu says she also began writing articles about fistula, still considered a poor woman’s disease.

“Through TERREWODE, the silence around this ugly condition was broken 15 years ago. We have now scaled up the best practices to other regions of the country.” Because the organisation is not-for-profit, Emasu continued with journalism to raise money, to fund the project. “People did not take female journalists seriously because newspapers at the time had mostly political stories. I was considered as a soft writer of women issues that did not sell the paper.”

Such was her devotion to women’s rights that even when she tried to write political stories; it was always with the women’s angle. She remained a freelancer for a long time, earning Shs20,000 per month. “Sometimes I would submit 10 stories and only one would be published. The rest would be torn in my face but I did not mind if the one published reflected women in a positive light.”

Turning point
In 2005, Emasu mobilised 300 women with fistula in Teso region, requiring surgery. However, her happiness was short-lived. “AMREF was funding Soroti Hospital to do the surgery, but it suspended the funding. I went to Mulago hospital and talked to many doctors until one gynaecologist, a woman, told me not to bring any more of ‘those’ women.”
The hospital did not have space. It was only later that the government commissioned a ward for obstetric fistula in Old Mulago hospital. Still smarting from her helplessness, in 2007 Emasu joined Washington University of St. Louis, Brown School of Social Work, for a Masters in Social Work specialising in reproductive health.

“My purpose was not to just acquire skills but to understand how the Americans had successfully fought fistula in the 1950s and to get partners to fund our work.” Within a month, she was introduced to Dr. Lewis Wall of the Worldwide Fistula Fund and the management of EngenderHealth in New York who helped her to understand how best to create awareness and fight fistula.

When EngenderHealth started the first training of surgeons from Uganda, who later went on to perform reconstructive surgery on affected women, Emasu attended the session. She also met officials from UNFPA, Uganda several times to convince them to include fighting fistula in their programme plans. At the time, they were supporting the training of traditional birth attendants to recognize the signs of complicated labour. Eventually, because of international processes going on about fistula in Asia and Africa, UNFPA, Uganda made eradicating the condition a priority.

ASHOKA Fellowship
Every vacation, Emasu returned to sustain the awareness campaign and supervise TERREWODE, and although she was offered a job in Washington at $44,000 (about Shs134m) a year she turned it down. In 2011, ASHOKA, a global organisation that identifies and invests in leading social entrepreneurs, contacted and informed her that her approach to fistula had qualified her for the Fellowship.

“It was another turning point. I was now committed to TERREWODE and had given up journalism and consultancy work. I made a covenant with God telling Him to support me so that I could fully serve this cause.”

God fulfilled his part through the Ashoka Fellowship. Though they did not fund her activities, they gave her a monthly stipend.

On work and marriage
“As a member of the Fistula Technical Working Group led by the Ministry of Health, we have a team of social workers and scientists.” The social workers provide care to stigmatised women to help them overcome the trauma. After seeing many getting surgery, Emasu was concerned about their reintegration into their villages. “These women had faced rejection and discrimination. It was not enough to fix the fistula. They needed help to recover their broken social networks,” she says.

After conducting a needs analysis, Emasu discovered that “there is a link between teenage pregnancy and the way society perceives the girl-child. Families do not budget for her in terms of land because they assume her husband will cater for her.”

In the event of fistula, teenage victims suffer double rejection because the men fear the implications of the law of defilement. The older women may insist on their rights but in the end, the husband will bring in another woman. “Our job is to raise awareness to parents to budget for their female children.”

Emasu is married to Livingston Seruyange whom she met in Pallisa in 1998 after he saved her from a fire that had engulfed her hotel room. The first thing he told her was that she was beautiful. “We exchanged contacts and he told me he would love to relate with a journalist. Those were words I needed to hear.” He supported her work by buying her a car to go to the field with their three-months-old baby. And even when she went to study, three months after her wedding, every evening he would call her at 11pm American time (6am Ugandan time) for her to speak with their two children.

“They would tell me they needed milk or socks and I would give instructions to whoever was responsible. Afterwards, I would go to sleep satisfied that I had done my mothering on phone.”

Role models
Emasu says; “The Uganda Media Women’s Association gave me a platform to institutionalise my ideas for rural women. I sharpened my leadership skills there. Also Rebecca Kadaga inspires me because in spite of her position she still finds time to consult with different organisations and to hear from vulnerable women.”

Emasu is also inspired by the women and girls who have survived obstetric fistula and sexual violence but still go on to hope and dream for a better life.

Challenges
Emasu says that since she is a born-again Christian, her main challenge is encouraging the women not to get emotionally dependent on the project. “Some of them want to live with me, but I encourage them to start a new life on their own,” she explains. Another challenge is separating herself from TERREWODE. “Every time I dream or think ahead, it is in terms of my work. I do not have any dreams for myself or family.”

What’s Obstetric fistula

It is a condition in which a tear comes between the vagina and rectum or bladder, caused by severe childbirth. Symptoms include urinary and fecal tract inconsistency, foul-smelling vaginal discharge and pain in the vagina area especially during sexual activity.

Statistics
According to the Health Services Commission, there is no recent information on the prevalence rates. The 2006 Uganda Demographic Health Survey shows that at least 200,000 Ugandan women have suffered symptoms of obstetric fistula.

Causes
Fistula tears develop during prolonged vaginal labour, when the foetus presses against the mother’s vagina very tightly, cutting off blood flow to surrounding tissues. The tissues disintegrate and rot away. Fistula is also caused by poorly performed abortions and cancers in the pelvic area, and violent rapes.

Risk factors
Early or closely spaced pregnancies and lack of access to emergency obstetric care are primary risk factors. Socially, poverty, lack of accessible maternal care, and early marriages are indirect causes. Poverty results in early marriages among rural populations, leading to teenage pregnancies.

Fistula survivor: Irene Mirembe’s story

In December 2013, I went to Mulago hospital to give birth to my first born child. I was 20 years old. It was a difficult labour because when I pushed the baby, it would not come out. I was in labour for one and a half day.

I was finally delivered of a stillborn baby. I lost consciousness and the doctors told my relatives that I had died. Later, they discovered that I was still alive but the tear in my birth canal was not repaired. When my husband got to know about it, he came and picked the body of his child and I have never seen him since.

My condition was critical, especially when the doctors realised I had fistula. They told my brothers that there is no cure for fistula. My brothers abandoned me in the hospital.
One day, some people came to my bed and told me they worked for TERREWODE and they told me I could be cured of fistula through surgery.

Since I had no one attending to me, I could not afford surgery but they took care of everything, from feeding me to paying for the surgery in Mulago.

Right now, I live with Alice Emasu since I do not have anywhere to go and I am grateful for the help she had given me right from that time of my sickness to now.

Prevention and treatment

Prevention
Prevention includes access to proper obstetrical care for a pregnant woman, support from trained health professionals who also provide advice in child spacing.
Access to quick and safe C-sections for mothers with under-developed pelvises, in obstructed labour helps.

Treatment
Fistula is treatable through reconstructive surgery done by an experienced surgeon. With successful surgery a woman can live a normal life again and have more children.
Counseling is also needed to rehabilitate patients who have experienced psychological trauma from being ostracized by the community.

Factfile
Schools attended
Emasu attended Bululu Primary School in Kaberamaido, Kako Secondary School and Caltec Academy. She joined Makerere University for Bachelors in Mass Communication specializing in print media. ”