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  • Bonnie Ruder

Imagine a world without fistula

Imagine a world where all women receive high-quality reproductive healthcare, and emergency obstetric care when needed. A world where women in labor are referred for cesarean deliveries in time to save their lives. A world where high-quality healthcare is available to the poorest women and to women who live in rural and remote areas. A world where infants survive labor and delivery, able to return home in their mothers’ arms, cared for and full of life.

No woman should have to live with a fistula for trying to bring a baby into the world. Yet in Uganda, thousands of women suffer this fate. An obstetric fistula is a devastating childbirth injury that is the result of prolonged, obstructed labor and lack of access to quality maternal healthcare. In most cases (90%), the baby dies during the long delivery, and the grieving mother is left with a hole, or fistula, in between her vagina and bladder and/or rectum. The result for her is uncontrollable, continuous incontinence, which in turn often leads to social isolation, discrimination, depression, chronic health problems, increased incidents of gender-based violence, and extreme poverty.

A world without fistula is possible. Today, obstetric fistulas are virtually unheard of in wealthy countries around the world. The fact that fistula continues to afflict hundreds of thousands of women in low-resource countries in Africa and southeast Asia is a human rights tragedy that can, and must, be corrected.

May 23rd is International Day to End Obstetric Fistula — a day to raise global awareness of fistula and garner support needed to end this childbirth injury. The United Nations has set an ambitious and inspiring goal of ending fistula by 2030. Achieving this goal will take vision, dedication, hard work, and partnership.

For Terrewode Women’s Fund, the path to ending obstetric fistula is through a long-term partnership with Terrewode, a women-led Ugandan NGO committed to gender equity, women’s sexual and reproductive rights, and ending obstetric fistula. Founded in 1999, Terrewode has been working for over twenty years to bring attention, resources, and medical expertise to fistula care in Uganda. Terrewode’s strengths stem from their close-to-community roots and deep expertise of the local, lived experience. Their comprehensive program is built on four pillars: treatment, reintegration, advocacy and awareness, and prevention.

A bold vision — Terrewode Women’s Community Hospital

Uganda has one of the highest fistula prevalence rates in the world — an estimated 114,000 women are currently living with fistula in the country, all in need of fistula treatment. In order to move the needle on this enormous backlog of patients, Alice Emasu, the co-founder of Terrewode, had a bold vision — a dedicated fistula treatment hospital providing expert surgical care year-round.

After years of planning and hard-work, her vision was realized in Terrewode Women’s Community Hospital (TWCH), which opened in 2019 in Soroti, Uganda. It is the first and only dedicated fistula treatment hospital in Uganda and provides expert surgical treatment delivered in a state-of-the-art facility. Already, TWCH has greatly increased Uganda’s current treatment capacity and is improving surgical success rates as patients receive holistic, patient-centered care, including optimal nutrition and the necessary rest post-surgery to allow healing to occur. TWCH provides quality follow-up care to patients, which is critically important in achieving long-term continence, and is also providing the first physical therapy program for fistula patients in the country.

Breaking down barriers to treatment

Dedicated to leaving no woman behind, Terrewode breaks down barriers for women seeking treatment. Knowing that poverty is the main barrier to seeking care, all services at the hospital are provided free of cost, including transportation.

Because women with fistula are often isolated and hidden, the Terrewode team brings patient identification deep into remote communities, through Fistula Advocates who are trained to identify and refer women with fistula symptoms to Terrewode social workers using Terrewode’s toll-free number. Community-based Fistula Advocates are often former fistula patients themselves, eager to help other women receive the life-changing care they know is possible.

Babies and children are also welcomed and cared for with their moms at the Terrewode Hospital, ensuring that having young children to care for is not a barrier to receiving fistula treatment.

Terrewode’s holistic Reintegration Program

As a grassroots organization working closely with women and girls suffering from fistula, Alice and the Terrewode team have long recognized that surgery alone is not enough to heal from the trauma of an obstetric fistula. This led them to pioneer a holistic reintegration program that allows women to heal both physically and emotionally, develop skills training for economic empowerment, and successfully reintegrate into family and community life. The model program consists of psychosocial counseling (including family and marital counseling), health, nutrition, safe motherhood and family planning education, microfinance and income-generation skills training.

As women reintegrate into their communities after treatment, Terrewode staff facilitate the formation of Fistula Solidarity Groups. These community-based women’s groups provide critical on-going support, co-counseling, opportunity for micro-savings groups, and self-reliance after fistula. Solidarity Groups also serve the wider community need by providing Safe Motherhood education, advocacy planning, and women-to-women support systems.

Awareness and Advocacy

Providing women with high quality, affordable, respectful maternal healthcare could prevent virtually all of these injuries. With this understanding, Terrewode builds awareness and advocacy into all of its programming.

To increase awareness of obstetric fistula, the importance of safe motherhood, and sexual and reproductive health rights, Terrewode trains a vibrant grassroots network of outreach volunteers to work in community settings to conduct fistula awareness activities, and identify and refer fistula patients to Terrewode for treatment.

However, awareness alone is not enough to end fistula; Terrewode uses their strength as an organization to advocate all levels of government to address the deficits women experience at underfunded government hospitals. Terrewode trains fistula survivors on legal rights and basic lobbying and advocacy skills, and uses radio programs in local languages and mass media campaigns to educate and advocate for improved women’s rights in Uganda.

Additionally, Terrewode engages in national level advocacy with the Ministry of Health and members of Parliament for increased funding for fistula treatment and prevention.

Prevention is key to ending fistula

If we truly hope to end fistula, we must prevent new cases from occurring. As Alice Emasu often says, “we must close the tap”. Terrewode Women’s Fund invests in the work to prevent fistula by supporting Terrewode’s community-based education programs on Safe Motherhood, preventing teen pregnancy and supporting girls to complete their education.

Terrewode also trains Music, Drama, and Dance (MDD) groups, comprised of both former fistula patients and male allies who have joined the campaign to end fistula, to perform for community groups, secondary schools, and regional and even national official gatherings. Many will be performing today, sharing their message of awareness and prevention on International Day to End Obstetric Fistula.

We can end fistula in Uganda and globally. Terrewode Women’s Fund and the entire team at Terrewode are dedicated to this goal.

Join us today on International Day to End Obstetric Fistula, as we imagine and work towards a world without fistula.

Photos by Lynne Dobson, TWF Board Director, Joni Kabana, and Dr. Barbara Teltschik.


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