A Few Things You Should Know About a Terrible Thing Called Fistula

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by Joy Portella


Last week, a Seattle event brought together a who’s-who of people working to eradicate obstetric fistula around the world. The Minerva Strategies team left inspired and in awe.


The cause of combatting fistula is near and dear to our team for a few reasons. First of all, it’s terrible. A fistula happens when a woman tries to give birth; has a long, obstructed labor; and a caesarean section is not an option. The pressure of her prolonged pushing creates a hole between the birth canal and the bladder or rectum – or both – which leaves her leaking urine or feces uncontrollably. Women who have fistula are often forced to live in isolation.


Second, this despair is totally preventable. Many fistulas can be treated with a surgical procedure. The famous Drs. Reg and Catherine Hamlin fine-tuned these surgical methods in Ethiopia. But the best way to prevent the suffering of women is to prevent fistulas from happening in the first place. If women give birth in a hospital or clinic where c-sections are available, or under the care of a well-trained midwife who can recognize problems early on and refer women to more advanced care, fistula incidence rates plummet. When maternal health systems improve, fistula disappears.


And finally, combatting fistula has become an integral part of our work. Minerva Strategies has been a proud partner of Hamlin Fistula USA for nearly four years. The organization supports the work of Hamlin Fistula Ethiopia to prevent and treat fistula and other childbirth injuries in Ethiopia. Soon they will be part of an exciting effort to build and run a hospital for women with fistula in Uganda.


It’s easy to see why our team hates fistula. It needs to be a thing of the past everywhere – the same way it has been in the United States and other wealthy countries for nearly a century.


At last week’s event, our team had the opportunity to meet a pair of activists who have waged all-out war against fistula. These ladies are kindred spirits with Dr. Catherine and the team of Ethiopians who lead the hospital in Addis Ababa and health clinics across Ethiopia. They were brought together in Seattle by GlobalWA and our friends at One-by-One, which combats fistula in Uganda, Tanzania, Kenya, and beyond.


The first woman we met was Alice Emasu, who leads an organization called TERREWODE in Uganda. Alice is a journalist turned social worker turned advocate for women’s health. She first became aware of fistula in high school when two of her close girlfriends suffered from the terrible injury, and a handful of others died in childbirth. This personal tragedy was indicative of a larger national problem. Maternal mortality rates remain persistently high in Uganda and there are many thousands of women living with fistula – some of them for a decade or more.


Against this backdrop, Alice turned her despair into action. When she discovered that there were no groups in Uganda to combat fistula, she started one. TERREWODE built a network of volunteers who refer women for health services, educate communities to fight stigma, and help survivors restart their lives after treatment. By 2005, TERREWODE was reaching women in half of the sub-counties in eastern Uganda and it’s grown from there. Alice recalled the early days of TERREWODE with a smile: “The UNFPA [United Nations Population Fund] called me a crazy girl – indeed I was crazy.”


Alice was joined by Sarah Omega, the Kenya program manager at One-by-One. Sarah is a fistula survivor – she lived with the brutal injury for 12 years before she had a corrective surgery. In the decade since, she has dedicated herself to helping victims of fistula come out of the shadows, get treatment and restart their lives. She spoke candidly about her own struggles with depression after she underwent repair surgery and reentered society, and she was passionate about her efforts to find women with fistula – often walking door to door – and help them reclaim their lives.


Beyond these fantastic speakers, last week’s event reinforced the idea that we can do more to fight fistula working together than apart. TERREWODE, Hamlin Fistula, and other partners will soon realize one of Alice’s long-time goals: to create a space that’s dedicated to quality treatment for women with fistula. This team is planning to open a new hospital – with capacity for 600 patients – in Soroti, Uganda in mid-2019. The hospital will feature Hamlin’s world-class model of treatment and care, and it represents Hamlin’s first large-scale foray outside of Ethiopia.


At the same time, One-by-One is joining forces with Worldwide Fistula Fund to form a single organization. Both groups see the move as a way to cost-effectively scale their programs and help more women. The united organization’s programs will reach women and girls in Burkina Faso, Ethiopia, Kenya, Niger, and Uganda. We look forward to seeing how this new union evolves.


The Minerva team is proud to be part of this global movement to end fistula, and we hope to see more amazing collaborations like these to reach that goal. As Alice told us last week: “Do not get tired!”


We won’t.

About The Author

Minerva Strategies

Minerva Strategies

The Minerva team has decades of experience working with nonprofits, foundations, and values-driven companies. Minerva also partners with experts—trusted designers, web developers, global communications professionals, and others—who share our excitement for creating positive social change. Through these partnerships, we can build a team that is tailored to your needs. Learn more about who we are or what we do.