Fistula: Torn apart by childbirth – recalls Florence Wanyonyi
Women suffering from fistula suffer shame, discrimination and even isolation, and while focus has been on surgical treatment, more is needed to ensure reintegration of survivors into society.
Florence Nanjala Wanyonyi, a 50-year-old mother of four vividly and painfully remembers two decades ago when she gave birth to her third child.
Living in a hard-to-reach area in rural Mumias, Kakamega county, she experienced prolonged labour under the watch of a traditional midwife.
Days later, she noticed something wa terribly off. “I realised I kept having constant leakage of urine or faeces through my vagina, which resulted in an awful smell,” she recounts.
Florence had never heard of something like that before, she thought her birth attendant had done something to her that would heal with time.
But the problem persisted and soon her neighbours and friends started to notice, leading to stigma.
“Suddenly, everyone could not stand my presence and would leave the moment they saw me approaching.
They laughed, pointed fingers at me and turned their lips up as if to block the smell,” she cringes.
Seeing how uncomfortable she made people feel, Florence would remain indoors as much as possible except when going to seek casual jobs, but even so, she would be allocated work (at farms) away from everyone else.
She stopped social visits, and no longer attended public and community events such as funerals and when she did, she would sit at a faraway corner.
She sought to cope with the odour by washing her clothes more regularly, taking baths and changing clothes frequently, but the smell always resurfaced. She thought she had been bewitched.
Her husband, who worked far away in West Pokot, on coming back, could not stand her. He ran away and abandoned the family.
For eight years, Florence lived a life of despair and dejection. She had given up hope of ever getting treatment for the condition that had ruined her reputation and troubled her marriage.
She experienced isolation, mainly as a result of shame, but also due to fear of harassment and ridicule and the physical weakness that compromised her ability to even walk.
Her young children became her only source of strength. They stuck with her and helped bring food to the table.
Her saving grace came in 2008 in the form of a programme that had set up its offices in the county, Women and Development against Distress in Africa (Wadadia), a registered national non-governmental organisation that partners with Fistula Foundation to make free fistula treatment for women like Florence a reality.
Florence was informed about the programme by her aunt and she joined other patients in the region for treatment.
“It is only after Wadadia reached out to me that I understood whatever was happening to me was not witchcraft, but a treatable medical condition, obstetric fistula,” she recounts.
Obstetric fistula is a complication of pregnancy that affects women following prolonged, obstructed labour leading to a tear between a woman’s genital tract and either the urinary or the intestinal tract and can result in incontinence of urine or faeces.
Florence, who was successfully treated and her marriage restored, is now working as an reintegration officer at Wadadia, serving as an advocate in her community for other women who are suffering from fistula.
There are a million women living with fistula in Africa and Asia, and though there is no known number of the actual women with fistula in Kenya, the 2014 Kenya Demographic and Health Survey estimates about one per cent of women of reproductive age has experienced fistula.
The United Nations Population Fund 2014 data estimates the incidence of obstetric fistula in the world to be between 50,000 and 100,000 women and girls each year and 3,000 new fistula cases every year.
Habiba Mohamed, Wadadia founder and lead director, says while Fistula does not discriminate, most patients are young and financially strained women and girls with little education and limited access to quality healthcare, including emergency obstetric care.
“Among major challenges we try to address include that patients lack knowledge that fistula can be repaired and are too ashamed of their condition to seek help as those not treated are shunned by their communities and relatives,” she says.
As such, she says Wadadia adopts a comprehensive approach to fistula programing that involves prevention, care and treatment and reintegration of the treated survivors.
It adopts interventions necessary to reduce barriers to accessing quality fistula repair services, and conduct public education and advocacy efforts to reduce stigma associated with the condition.
Habiba says few women declare they have the problem, tend to keep away from the hospitals and stay in the communities where it is difficult to identify them.
Unlike other fistula organisations, which focus on the surgical camp model that involves preplanned activities where volunteer surgical teams congregate at specified places and perform corrective surgeries, for a limited period of time and majorly focusing on numbers, Fistula Foundation focuses on routine care network model within a treatment network.
“Our model overcomes limitations of the camp model by investing in treatment centres, comprehensive care of patients before, during and after treatment, and in all aspects of their lives,” she says.
Their programmes revolve around three interrelated pillars of economic empowerment, psycho social support and reproductive health.
“We recognise that long-term emotional, psychological, social and economic experiences of women following surgical repair receives less attention.
Women face problems including separation and divorce, infertility, stigma, isolation, shame, reduced sense of worth and psychological trauma,” she says adding, “We seek to address all these as opposed to just focusing on surgery.
“Under economic empowerment fistula survivors are provided with skills training such as hair dressing, computer training, tailoring and beadwork to empower them economically.
These skills not only build up their confidence, but it also provides them with a skill they could use to make a living when integrated back to their communities,” says Habiba, who also doubles up as Fistula Foundation’s country manager.
During this coronavirus pandemic, for example, survivors undertaking tailoring training embarked on a noble cause, that of making African print facemasks, which they donate to Wadadia field officers and community health volunteers in charge of Covid-19 sensitisation activities. They plan to further distribute the masks to the community for free.
Some of these survivors are also players in the Wadadia FC, a football team whose theme is ‘Kick Fistula out of Africa’ and of which Habiba is the patron.
The team plays in the Football Kenya Federation Women Premier League. Their goal is to give hope to victims of obstetric fistula and sexual abuse in the country through conducting sensitisation programmes during their matches.
Income generating activities they are involved in include poultry projects, gardening, table banking among support groups as well as internal loans raised from members’ shares, which they lend to each other at a small interest and minimal conditions.
Under psychosocial support pillar, Wadadia, through its members, conduct home visits to survivors to check on their progress, provide care to patients still healing from surgery or any other complications, offer psycho-education and basic skills to family caretakers, group counselling among other interventions.
And under the third pillar, which is reproductive health, Wadadia guides survivors on whether it is safe to get pregnant again after surgery.
“Part of rebuilding our members’ lives include finding out if they are physically able to bear children. We offer family planning counselling and methods to fit their needs.
For a healthier outcome, usually, they are recommended to postpone pregnancy following fistula repair until they are completely healed, usually at least one year after surgery,” Habiba points out.
Further, they are helped to plan for a hospital birth by cesarean section, make a transportation plan for getting to the hospital for delivery, including setting aside funds to cover those costs.
“Programmes focusing on the needs of the women should address their social, economic and psychological needs, and include their husbands, families and the community at large as key actors,” Habiba says.
Other challenges towards ending fistula in the country include a weak health system, poor infrastructure, few resources and in some cases, weak political emphasis on women’s reproductive health.