The reception to End Fistula, held in May 2019 in Juba, South Sudan is part of the ICPD Road to Nairobi. The 2019 ICPD (International Conference on Population and Development) will be held in Nairobi, Kenya in November 2019. ICPD works to promote gender equality and women’s empowerment.

The upcoming international conference aims to: achieve quality and equity between men and women and empower women to realize their full potential; ensure women contribute to sustainable development through their full involvement in policy and decision making processes at all stages; ensure that all women are provided with the education necessary for them to meet their basic human needs and to exercise their human rights, and; eliminate all forms of discrimination against the girl child and improve her welfare, especially in regards to her health, nutrition and education.

The girls are getting restless. Some of them listen intently, others fidget with nervous adolescent energy.  All are wearing crisp white shirts bearing the ICPD logo. Speakers discuss the grim reality of the fistula health crisis in South Sudan, the challenges women face in the country, and the steps needed to overcome them as part of the Fistula Awareness event held in Juba, South Sudan in May 2019.   One girl of about 14 leans in closer, as if these words were directed at her.  She leans in close because these words are, in fact, directed at her:

“Get an education. Value yourself and your education.  And stay away from rich men in fancy cars” states Dr. Samson Baba, Director General of Community and Public Health, South Sudan. His tone is grave and serious, as if her very future depends on following these words.

“It is a hot day” I mutter to myself as I search for some shade under a large tent set up. It’s rainy season. But there is no rain. Only heat and sun. Edward, a student midwife at JCONAM (The Juba College of Nursing and Midwifery) laughs and asks “What did you expect it to be? Cold? It’s Juba!”  He, along with about 50 midwife and nursing students (identifiable by the distinct colours of their uniforms- blue for nurses and pink for midwives), and about 50 or so secondary school girls, a selection of traditional dancers, media and honoured guest speakers (including Dr. Baba,  Dr. Stephen Mawa, RHCS Specialist, UNFPA South Sudan Country Office) and moderator Siama Abdalla Lado (Midwife Analyst, UNFPA)  were in attendance to discuss the very harsh realities of fistula and the cultural and structural issues that can lead to it occurring.

“Did you catch what he said about rich men in fancy cars?” Asks Bev, one of the Canadian midwifery consultants also in Juba, collaborating on creating workshops on continuing professional development with the South Sudan Nurses and Midwives Association (SSNAMA).  No. I hadn’t. “Was it to remind them to keep their eyes on their goals of getting an education, and not being distracted by sweet talking guys they meet?” I ask.  “Not really.” She answers. “Girls often have little or no money to buy feminine hygiene products. So, they will sometimes be coerced into performing sexual favours for men with money in order to get the funds to buy the feminine hygiene products.  Often, when the girls get their periods and have no access to pads or tampons, they cannot go to school. And it leads to a vicious cycle.”

I look at the girls in attendance. Some are as young as 11 or 12.

A little later, during a question and answer period, a young woman stands up and asks what fistula is:

“An obstetric fistula is a hole between the vagina and rectum or bladder that is caused by prolonged obstructed labour, leaving a woman incontinent of urine or feces or both. For women with obstructed labor, labour that goes unattended, the labour can last up to six or seven days. The labour produces contractions that push the baby’s head against the mother’s pelvic bone. The soft tissues between the baby’s head and the pelvic bone are compressed and do not receive adequate blood flow. The lack of blood flow causes this delicate tissue to die, and where it dies holes are created between the laboring mother’s bladder and vagina and/or between the rectum and vagina. This is what produces incontinence in a fistula patient.”

Not only are the health risks dangerous and damaging (risk of infection, damaging other organs and death) but the stigma around the condition is as destructive. Fistula often results in social isolation, public shaming, suicide and death.

Over 60,000 cases of Fistula have been reported in South Sudan.

Fistula is not only a global health crisis, but a cultural one. And, according to Dr. Baba, it is “a violation of basic human rights”.  In too many places, he continues, “Women and girls are seen as property, and families often feel pressures to sell them off in order to recover their debt. The problem is lack of access to education. The problem is child abuse and calling it child marriage. The challenge is less than optimal nutrition.” Girls getting married and pregnant before their bodies are fully able to handle birthing a baby is another cause. Labours can become complicated, and prolonged. With clinics often inaccessible due to lack of roads, they often arrive at health care facilities when it’s already too late.

“This is why I am studying to become a midwife, and why I believe midwives can make a big, big difference.” said Edward later as we eat lunch together. Samosas and a sweetened dough-like ball that Edward tells me isn’t very good.  The samosas are delicious. Some are not eating because it’s Ramadan, so they save their lunch for sundown. He continues. “There are so many girls, young girls getting pregnant. They are still children themselves, and now they are supposed to have a baby. And so so many women dying in my community.” His eyes look away, remembering. “My sister, she died in childbirth. There was a mother with her, an attendant, to take care of her.  But she was not trained.  They waited so long…both her and her child…” His voice trails off. More, better trained midwives will lower the prevalence of fistula. More, better trained midwives will offer the guidance and respectful care necessary for a lot of these young women with regards to sexual and reproductive health and justice.

The dancing and singing begin. The girls laugh. Mama starts singing.  Some join in the dancing. Others continue to laugh. Random laughter. The 14-year-old, whose name I don’t know is the first to join in the dancing. She disappears into the group of kids while much of the group disperses for work, class and home.  I cannot help but wonder what her path ahead will be. And hope the words spoken today will have real concrete meaning in her future.

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