When Heidi Breeze-Harris realized she was going to be laid up for most of a very complicated pregnancy, she worried about how she would pass the time.
But the answer arrived in the first month. Breeze-Harris was in bed, watching an episode of Oprah, when she first learned about the birthing injury obstetric fistula.
“It’s a hole in the body where a hole doesn’t belong,” says Breeze-Harris describing how long, obstructed labors can tear the bladder or rectum. “The woman is left with a hole through which she will leak her waste uncontrollably.”
Fistula is almost nonexistent in the United States. Women here usually have cesarean sections to relieve obstructed labors, or it is immediately repaired through surgery. But in poor parts of the world, fistula, and the constant leaking waste that accompanies it, can have horrifying consequences.
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“They are at the end of the line,” says Breeze-Harris, explaining that women with fistula — many of whom lost their baby in the labor that injured them — are unable to work or socialize, often shunned by their communities and even believed to be cursed.
“This is considered by many aid workers to be modern-day leprosy.”
It’s difficult to determine how many women live with fistula worldwide, but there is estimated to be 2 million existing cases — with as many as 100,000 new cases every year.
After learning about fistula, Breeze-Harris, armed with a laptop and some free time, was moved to action. Her first thought was “This should go away.” Her second thought was “Well, I’ve got a big mouth, I’m going to make a website.”
Her goal was to raise awareness about the problem and raise money for a recently formed United Nations campaign to end fistula.
Then, almost unbelievably, she found herself in a hospital bed experiencing an obstructed labor, the kind that in another country could have resulted in the death of her baby and an unrepaired fistula.
She had an emergency cesarean section instead.
“Totally coincidence,” says Breeze-Harris. “After 8 months of building partnerships…. [and] figuring out where I wanted the resources we gathered to go, I almost died in childbirth here.”
But that coincidence kicked her into high gear. Soon after the birth of her son, now 8, she was working 70 hours a week from her little basement office, her new baby in a cradle next to her desk.
She visited homes and churches and hosted giving circles. In less than a year she had raised $150,000
— “mostly $30 at a time.”
Today Breeze-Harris is Founder and CEO of One By One
— a Seattle-based organization aimed at eradicating fistula in a section of Western Kenya.
“Before you have perfect roads, or a perfect ministry of health, can you … just make it go away?” she asks, hitting the conference table in her Ballard office with the side of her hand, “Pick a spot and just make it go away?”
Breeze-Harris believes you can. Her organization has trained 30 One By One representatives on the ground in Kenya.
Most of them are fistula survivors themselves.
These health workers educate communities and identify other women living with fistula.
Those women are taken to a clinic for surgical repair, then encouraged to join One By One support groups that facilitate medical follow-ups and social reintegration — often a challenge after long periods of isolation.
In the past two years, the organization has
provided surgeries to 360 women.
“Start imagining a woman who cannot control her own urine or feces … you sit there and it just pours out,” says Breeze-Harris. After the surgery, “then, they change, like overnight.”
Breeze-Harris is aware that taboos against discussion of the female anatomy and human waste make it hard to raise awareness about fistula, both in Kenya and the United States. But she is motivated by a belief that someone would raise awareness for her if the tables were turned.
“I’m not going to sugarcoat what’s true for a whole bunch of people,” she says.
Because as hard as it is to hear about, imagine living with it.
Sarah Stuteville is a multimedia journalist and co-founder of The Seattle Globalist, www.seattleglobalist.com, a blog covering Seattle’s international connections. Sarah Stuteville: firstname.lastname@example.org. Twitter: @SeaStute