ELDORET, Kenya — After three days in labor, Susan Kapkarich’s baby was stuck, only one of her legs protruding from her mother’s body.
Fearing for her life, her husband and other villagers carried her on a wooden chair for four hours to the clinic closest to her home in western Kenya. She woke up the next morning in a clinic bed soaked in urine. Like some 2 million women around the world, Kapkarich had developed a fistula.
Every minute around the world a woman dies in childbirth, but for every woman who dies in childbirth another 25 suffer a debilitating injury such as obstetric fistula. An estimated 50,000 to 100,000 new cases occur each year.
A fistula occurs when a hole is torn in the bladder or rectum, most often when a woman’s labor is obstructed and she doesn’t have access to quality maternal health care. Without surgery, she will constantly leak urine, feces or both for the rest of her life.
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Today, Kapkarich advocates for women like herself with One by One, a Seattle-based organization. In partnership with Gynocare Fistula Center In Kenya, One by One provides free surgeries for women with fistulas, and aftercare to deal with the devastating social and emotional side effects.
Kapkarich works as a regional representative, educating her community about fistulas and finding women in remote locations suffering from the
condition. She then helps bring these women to Gynocare, where One by One has paid for 525 fistula surgeries since 2011.
Fistulas have gained international attention only rather recently. In 2003, the United Nations Population Fund (UNFPA) launched the Campaign to End Fistula and has since partnered with more than 100 organizations, including One by One.
Fistulas are known as a devastating problem with an upside: They are treatable with relatively simple and inexpensive surgery. The greater challenge is finding these women, who are often shunned by their families, and then helping them to rebuild their lives.
Maternal health care
The car tips back and forth, slinging its passengers from side to side as it churns up the steep slope.
“Now imagine being in labor and doing this,” Heidi Breeze-Harris says, as the SUV makes its way up the same path Kapkarich was carried down when she was in labor.
Breeze-Harris is One by One’s founder. During the car ride she conducts meetings, answers staff questions and fires off anecdotes about maternal health.
“Every day you don’t do something, somebody dies, or they’re still living with fistula,” she says.
In 2004, Breeze-Harris was cooped up in her Phinney Ridge home during a difficult pregnancy when an Oprah show about fistulas came on. It featured women with fistulas who had been cast out of their homes, living in huts in the middle of nowhere.
“That should be gone, that shouldn’t exist anymore,” she thought. “Why would anyone want their life to go to waste when all you need is a surgery?”
Breeze-Harris decided to raise money. She proved adept at it, and in less than a year collected $150,000.
Before the end of that year, Breeze-Harris went into labor with her first child.
Breeze-Harris was taken to EvergreenHealth Medical Center
in Kirkland. Stuck in rush-hour traffic on the Highway 520 bridge, she was struck with a newfound understanding of the importance of maternal health care.
“It’s not an ‘us’ or ‘them’ conversation; this could happen to anyone anywhere in the world,” she said.
After an emergency cesarean section, Breeze-Harris gave birth to a healthy boy. She had a second surgery to stop internal bleeding. After she was released from the hospital, she attacked her work with a new zeal.
“I was lucky enough to have access, that’s the only difference. … If I had lived (in rural Kenya), I’d be dead and Coleman (her son) might be dead, too,” she said.
According to UNFPA, 58 percent of women in developing countries give birth with the assistance of a professional and 40 percent give birth in a hospital.
Eight years earlier in rural Kenya, Kapakarich was one of those women who had not been so lucky.
Unlike most births that lead to a fistula, Kapkarich’s child survived. She trekked home from the hospital, leaving behind a trail of urine, a condition she would suffer from for the next 12 years.
Kapkarich is petite and affectionate, known to bury her head into a friend’s shoulder or rest her hand on someone’s cheek when she’s talking to them. After she developed a fistula, friends and family recoiled from her touch.
“When neighbors would come to visit, I would stand up and my clothes would be wet; when I made them tea, they would refuse it,” she said. “They would leave holding their noses. I couldn’t even go to church because of the shame. Whenever I sat near people, they would move away,” she said.
Her husband, Peter, called her family back, demanding to renegotiate the price of her dowry.
Three months later, he left her and married another woman. Kapkarich barely ate. Sores developed from the torn cloth she used to soak up the urine.
In a place where family is paramount and identity is derived from one’s position in a community, Kapkarich felt she had little to live for. She considered taking her own life.
That was when Florence Chemomenyu, a fistula survivor and One by One regional representative, found her. One by One has 30 regional representatives who receive stipends and work with One by One’s three full-time Kenyan employees. So far, they have held 1,628 outreach and education sessions in their rural communities.
With Chemomenyu’s help, Kapkarich was admitted to Gynocare Fistula Center.
The center was opened in 2011 by Dr. Hillary Mabeya, who has performed more than 3,000 fistula surgeries in his career. On one typical day last spring, Gynocare’s patients included an 11-year-old girl who had been raped by her neighbor, an 80-year-old woman who has had a fistula for more than 60 years, and a 19-year-old who was a child bride and had given birth at 13.
While large organizations like UNFPA can perform 200 surgeries in one month, One by One’s efforts sometimes fail to bowl over donors, and Breeze-Harris and the three Seattle staff members have often struggled to gain a financial foothold in a world that expects big numbers and rapid results.
But for every $500 surgery that is performed, hundreds of additional dollars are needed to treat the emotional and social effects of fistulas. One by One does education to smooth the transition back into a community, pays for transportation and offers counseling to cope with the trauma most women have undergone.
“People who are poor enough to get fistula need everything,” she said.
Poverty has usually led to a host of other medical problems that must be treated first. One patient arrived at the hospital malnourished and suffering from both malaria and leprosy in addition to having a fistula.
After surgery, women must refrain from heavy manual labor, a medical caution that can seem like a death sentence in harsh physical environments. The women must also abstain from sex for six months, often seen as an affront to the husband if he is still around.
Statistics on fistulas remain scarce. While thousands of free fistula surgeries have been performed since UNFPA started its global campaign, little is known about how many women’s fistulas recur after they are repaired.
The cost of this kind of care adds up and makes running even a small organization expensive. While One by One has some corporate support, last year’s operating budget of $708,295 was made up mostly of individual donations.
Breeze-Harris has chosen to focus solely on western Kenya for now in the hopes that with a “smaller geographic space” the organization can have “a deeper more holistic impact.”
Susan Kapkarich’s fistula has been repaired for four years and she has reunited with her family.
“Indeed I suffered a lot, but because of my experiences, I am qualified to be a teacher,” she said of the work she does now through One by One to educate her community about fistulas.
“All I need is a chalkboard and a piece of chalk, I am proud of that.”
Her husband returned and now has two wives.
He becomes nervous when asked about his wife’s fistula, looking down at his palms.
“My friends laughed at me,” he said. “My family wondered why I had married such a bad wife; they had isolated me, they used to not visit me.”
The couple now does outreach together, both of them standing up in front of groups to share their story.
He seems desperate to be the support he failed to be for so many years.
“She changes people and she’s an example for relatives and the community. People treat her as a doctor, and things are changing,” he says of his wife’s work.
“I never thought that one day she could be such a leader, because before she was treated, she was despised, to me it is a miracle.”
As he turned toward her, they leaned in and rested their foreheads together.