From Fistula Treatment to Healthy Communities

Heidi Breeze-Harris

A preventable, treatable injury sustained in childbirth, fistula is a “canary in the coal mine” — an indicator of failing health systems and an indicator of places where civil societies are deeply failing women and girls.

Two million women in the developing world are suffering from a debilitating childbirth injury that was virtually eliminated in the United States in 1895. That injury is obstetric fistula.

If perchance you didn’t know about obstetric fistula before reading this issue of Rewire, you are not alone. One of the hallmarks of this terrible injury is that it goes largely un-discussed and women who suffer do so in isolation.

So what is fistula? A fistula is a hole in the body where it does not belong. In this case the hole is caused by an obstructed, unrelieved labor that can last as long as five days. This traumatic labor most often results in the death of the baby (in 90% of cases, according to the Campaign to End Fistula) and the mother is left with a fistula, or a hole, between her bladder and the outside world through which she will leak urine and sometimes feces, uncontrollably, for the rest of her life unless she is treated.

This woman, who has lost her child, now soaks her mattress and clothes with urine and waste. She smells. Sometimes she tries not to drink so the liquid will stop coming. She is sometimes told this labor was somehow her fault. She may have nerve damage in her legs making it difficult to walk. Often she can no longer work. And without treatment she cannot bear more children. Sometimes she is discarded by her husband — these women live in shame and isolation the likes of which we cannot imagine. They are usually unable to board a bus and they are afraid to take communal meals for fear of bringing shame on their families. To say fistula robs them of their dignity is a gentle way of saying it robs them of living. Victims of fistula can be as young as twelve years old. But no matter at what age a woman gets a fistula, without treatment her life is no life at all.

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The Good News

And yet as horrifying as fistula is, it is treatable and preventable. Fistula is an injury, not a disease. This is not a matter of whether fistula can end, it is a matter of when. The Waldorf Astoria in New York City now stands at the site of the last fistula hospital in the United States. Except in rare cases, fistula is a memory in the developed world. And it can be made a memory everywhere.

To treat one woman with fistula costs an average of $300 — a bargain for a life returned. Treatment consists of physical therapy followed by a surgical procedure that takes from one to seven hours on average to perform, and then proper post-operative care, rest and further physical therapy. The full process helps women ultimately become “dry,” or able to hold their waste without leakage. Approximately 90% of women with fistula who get surgical treatment are cured.

One By One, the organization that I co-founded and now run, works toward the elimination of obstetric fistula worldwide by engaging the public and providing financial support to those who treat and prevent fistula in the developing world. One of our current grantees is the Bugando Medical Center’s Fistula Project (BMC) located in Mwanza, Tanzania. Philomina Marko was treated at BMC in 2007 for a fistula she sustained in 2002. Her story, following, speaks volumes about this tragic condition and the amazing transformation that a relatively inexpensive surgery can provide. Philomina says,

“I am 28 years old and I live in Nyakahanga, a village in western Tanzania near the Ugandan border. On March 15, 2002, I went in to labor with my second child.

"I had my first child when I was 18 years old. Everything went smoothly and so my parents and mother-in-law saw no reason for me to deliver my second baby in a hospital.

"I labored at home for two days, until I was too exhausted to continue. When my family realized that my life and the baby’s life were in danger, they collected the money to take me to the nearest hospital three and a half hours away. I was rushed to the operating room where a doctor took out my baby. My son, Joseph, is alive and healthy thanks to this surgery.

"When I returned home, I knew something was wrong. I couldn’t control my bladder. I was scared of what my family and people in my village would say, so I tried to hide the leaking. I did not understand why this was happening. It was a very lonely and sad time for me.

"Then one day, I was listening to the radio and I heard about fistula and the Bugando Medical Center. They said I could get help there. I begged from family, friends and neighbors until I had the 25,000 Tanzanian shillings ($20) for the trip. It took me five years to save enough money to make the journey to Mwanza.

"When I arrived at the Bugando Medical Center, the doctors fixed my fistula and the leaking stopped. They were very kind to me, they even gave me money so I could travel back to my family in Nyakahnga Village.

"Before I left, I told the nurses ‘You work very hard here, and people are cured. I will go home and tell other women so they have a chance to be healed too!’

"I am looking forward to being back in Nyakahanga with my husband and my two children, and living without this terrible injury.”

Fistula – The “Canary in the Coal Mine”

As Philomina's story demonstrates, treatment is critical and valuable and must continue for women who have fistula. And yet, treatment is not the path to ending fistula for all women, everywhere. Fistula is a “canary in the coal mine” — an indicator of failing health systems and an indicator of places where civil societies are deeply failing women and girls. To end fistula the prevention strategies must include medical and social and economic programs.

Some medical prevention strategies include more ready access to emergency obstetric care, maternal waiting centers near properly staffed and supplied clinics, training for skilled birth attendants and the community-based education to help those attendants attend more births. One of One by One's grantees, the Campaign to End Fistula, (a program of the UN Population Fund) is the largest fistula treatment and prevention organization of its kind, working in over forty countries worldwide. The Campaign specializes in many of these strategies.

One By One echoes our colleagues at the Women’s Dignity Project (an important fistula organization in Tanzania) in saying that poverty and the concomitant social issues related to gender equity are root causes of fistula and need equal attention if we are to truly see the end fistula.

The status of women and girls simply needs to go up. Girls need to be able to eat more – literally consume more calories – to help their bodies from being stunted. Girls need to do less hard labor such as fuel and firewood gathering which readily consume the few calories they do eat. Girls need to go to school and marry after age eighteen. Our friends at the International Center for Research on Women are working on an important piece of federal legislation on funding for programs that would help prevent child marriage. Just absorb this striking statistic — 100 million girls will marry before the age of eighteen in the next decade (see Rewire's previous feature series on child marriage.) From the perspective of fistula, this statistic matters because when girls marry young, they begin childbearing earlier. When they begin childbearing earlier their chances of dying or being injured, including getting a fistula, go up significantly.

Statistics show that keeping a girl in school is the most successful way to keep her from early marriage and thus early childbearing. With this education her chances for survival go up along with her economic prospects. As an added bonus, some schools offer feeding programs so the girls’ body will be nourished alongside her mind. There are only added bonuses to keeping girls in school.

Girls and women need access to voluntary family planning and the gender equity to feel safe with that access. Equipping women and girls with voice and choice about the size of their families and the spacing of their children could literally save the lives of countless women and children. Re-funding the UN Population Fund so that they can continue their important work on voluntary family planning and gender equity would be a huge step for the United States since its de-funding of UNFPA in 2002.

From Treating Fistula to Healthy Communities
In Swahili there is a word for pregnancy that means “carrying death.” In Chad a local proverb says, “A woman who is pregnant has one foot in the grave.” Add to that the statistic that one woman is dying in pregnancy or childbirth every minute of every day for a total of 529,000 women a year — dying of entirely preventable causes. One can begin to feel where these proverbs come from — the grim reality of childbearing in the developing world.

Women with fistula are the ones who survived their harrowing childbirth experiences. But not without a cost and not without reminding us of the tragic experiences of both the dying and those who are left behind, injured and devastated.

Fistula is an indicator of where motherhood is not safe. And where motherhood is not safe, nor is womanhood nor girlhood. One By One sees treating women with fistula as a step on the road to preventing fistula, which is a step on the road to safe motherhood, which is a step on the road to gender equity. The final destination we foresee is a world where women and girls and men and boys, together, bring their gifts to creating healthy communities. One By One is proud to be even a small step on this road that, with great community leaders, is becoming more and more traveled every day.

Thank you to Philomina Markos and the Bugando Medical Center Staff for sharing her story and picture.

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