Obstetric Fistula in Zimbabwe

“It’s been three years now, I can’t wear underwear, urine is always leaking. I have developed sores on my genitals that aren’t healing because of the moisture. I dread going out in public. The last time I went to a gathering, people distanced themselves from me because of the bad smell, it repelled them. I’m confined to this house so I can bathe each time I soil myself. My entire family believes I was cursed, they say no one has ever had a disease like mine before.”

Nyaradzai, a nineteen-year-old living in my community in Mashonaland, West Province, Zimbabwe, is one of the many women suffering from fistula. Like many others, Nyaradzai has been unaware that hers is a condition that needs medical attention. She tells me her story…

“Three years ago, I dropped out of school. I was pregnant. My parents chased me from my home, so I went to stay at my boyfriend’s house. He was still in high school too, but his parents accepted me. I stayed there for six months. However, the baby died while I was in labour. It took me 6 hours to get to the nearest clinic – I was walking because my in-laws couldn’t afford to hire an ambulance to take me there. When I arrived, the nurses ignored me. In fact, they scolded me for getting pregnant at such a tender age. I was 16 at the time. While I was in labor, I passed out. I can’t recall what happened, but when I gained consciousness, I was in so much pain,” said Nyaradzai.

“When my in-laws heard that I had delivered a stillborn baby, they called me a witch and returned me to my parents’ house. My problems started a few days after labor. At first, I thought maybe I was delaying going to the toilet, but I was also wetting the bed at night. Now when I go to sleep I take a cloth and place it between my legs and put a plastic sheet underneath me so I won’t wet the bed. I can’t wear underwear because of the sores on my genitals,” she told me.

Nyaradzai’s story could be the story of many women living with fistula in Zimbabwe and other developing countries. Fistula is a silent condition, and as a result many women are suffering in silence. Huge numbers of people are not aware of what it is, what it means for women, and that women feel ashamed talking about it.

A fistula is a passage or hole that has formed between the two organs in one’s body. Obstetric fistula is the primary type of fistula that affects women in developing countries due to poor obstetric care, and can be caused by a prolonged and obstructed labour without treatment. Statistics show that at least 2 million women in developing countries are living with fistula.

Obstetric fistula is an abnormal opening that develops between the birth canal and the urinary tract. Young girls whose birth canals are still narrow can often experience fistula as the head of the baby presses hard on the mother’s bladder causing a tear which, if not surgically repaired, will cause a continuous leakage of urine.

Today marks International Day to End Obstetric Fistula. It is important that we talk about fistula, teach communities about it and encourage women to help one another through education and empowerment and delaying marriage and child bearing.

Read more posts about Obstetric Fistula on girlsglobe.org here

Fistula in Her Words

As storytellers mobilizing support through narratives, we are acutely aware of our responsibility to do so without jeopardizing the privacy or dignity of the people we serve.

Today marks International Day to End Obstetric Fistula, and we’ve been reflecting on an important question: How do we, as fundraisers, clinicians and global health advocates, talk about fistula without imposing our own narrative and excluding women from their own stories?

How do we talk about fistula?

Obstetric fistula is one of the hardest global health topics to discuss. Women living with fistula are some of the most vulnerable in the world. Each has survived a prolonged, obstructed labor, which could have killed them, only to survive with lifelong morbidities.

Women who survive obstructed labor often lose their baby. The babies that survive can suffer lifelong neurological disease caused by reduced oxygen levels during labor. These babies may suffer paralysis and developmental deficits. In addition to the chronic incontinence that comes when a fistula develops, the women who survive this dangerous labor often experience foot drop, infertility, internal scarring that prevents normal sexual relations, and post-traumatic stress disorder.

When a woman returns home with a fistula she is constantly leaking urine, faeces, or both. As a result, she will often face stigma and rejection from her own family and community. Every day, we see the devastating effects harsh words from misinformed family and community members have had on the women who receive free, comprehensive treatment from our sister organization in Tanzania, CCBRT.

“Some of [my neighbors] said having children caused this, others told me I was being cursed by witchcraft”. ~ Fadhila
“My step father influenced my young siblings by telling them that my condition was contagious and that they should keep away from me. They were always laughing at me.” ~ Mercy

In addition to surgical and physical rehabilitation, CCBRT provides counselling and therapy to address the emotional and psychological scars left by fistula, and conducts national awareness raising campaigns to battle the misconceptions surrounding the condition.

Fistula in her words

We asked twenty women and girls undergoing treatment at CCBRT how they identify themselves and prefer to be identified – they chose words like ‘mama’, ‘businesswoman’, ‘entrepreneur’. Not one person wanted to be thought of as a ‘patient’ or a ‘victim’. The women and girls we serve do not want fistula to define them or their place in their community.  It is imperative that we tell these women and girls’ stories on their terms.

The power of an international platform

Kupona and our partners are in a privileged position, able to raise the voices of women and girls who often struggle to make themselves heard even before they are faced with severe trauma. We are inspired by the strength and resilience of those we meet, and strive to communicate that when we amplify their stories.

“In meeting women and learning the stories of what they do to support their families, and how much they have overcome, I am amazed by their strength. I have met women like Christine. A woman of great self-worth, she built her life with little support, and today she stands tall because she found the care she needed with a skilled surgeon. I will always remember her – not as a victim, but as a strong, empowered woman who is a role model, and my hero.”
~ Kim Keller, Johnson & Johnson

We also try to hear our words as they would sound to women who have lived with fistula. Our goal is never to be sensational or graphic; it is always to elevate the voices of these women and girls, allowing them to share their stories in their own words.

“Women with fistula have suffered so much, so deeply.  Many have been voiceless for too long, hiding their injury in shame. The very least we can do is choose our words carefully when it comes to discussing their condition or sharing their story, to be as respectful as we possibly can.” ~ Kate Grant, CEO, Fistula Foundation

As global storytellers, we are custodians of other people’s stories. We still have so much to learn, not just from these women, but from their families as well.

“While many women with fistula are abandoned by their husbands, in every fistula center you will find many husbands who support their wives, bringing food, clothes and news from home, talking to the nurses and doctors and celebrating the day that their wives are able to make the trip home. These men, whose stories are invisible and whose needs are not understood, are certain to have much to teach us. Imagine the value yet to be tapped if we were to expand our storytelling to include these husbands, from whose resilience and creativity we have much to learn.”
~ Dr. Lauri Romanzi, EngenderHealth

 We want to learn from you too. Join us for the #HerWords Twitter Chat TODAY –Tuesday, May 23, 2017, 10 am ET – and share your thoughts on the power of language.

Kupona Foundation is CCBRT’s sister organization in the United States, mobilizing resources to enable the sustainable growth of their life-changing work in Tanzania. CCBRT’s comprehensive fistula program is one of the largest in the world. In 2016, over 1,000 women received treatment and holistic care for obstetric fistula at CCBRT Disability Hospital in Dar es Salaam, and 6 other partner facilities across Tanzania. Learn more at kuponafoundation.org

Tragedy to Triumph: How sewing lessons are changing the lives of women with fistula

Written by Samantha Bossalini, Development and Communications Associate 

The city of Dar es Salaam, Tanzania is anything but quiet. An increasingly modern metropolis overlooking the Indian Ocean, Dar is home to 4.4 million people, and is one of the fastest growing cities on the African continent. It’s a cacophony of noises, sounds, colors, and smells; ironic for a city whose name means “Place of Peace.”

On one of Dar’s residential streets, however, there is a peaceful haven. Behind a stone wall sits the Mabinti Centre. The simple house hums with the sound of sewing machines.  The women working at the machines range in age from 16 to 30-years-old. They greet visitors with smiles and a warm welcome: “Karibu!” Bright kanga fabric and canvas slips beneath their whirring needles as an instructor crouches down to talk them through a difficult stitch, or to share encouragement. In the garden, ladies gather under a thatched gazebo to practice screen-printing on bolts of fabric. Some are learning to tie-dye, some to stitch tiny dolls made of beads and yarn. All are beginning to heal.

One thing unites these women. Each of them women developed obstetric fistula during childbirth.

Whenever I explain obstetric fistula to someone, I start with the physical symptoms: a hole caused by prolonged, obstructed labor without access to timely medical care. The pressure of the baby’s head on the laboring woman’s pelvic floor kills the soft tissue and creates a hole between the vagina and bladder (or rectum, or both). Women with fistula are left chronically incontinent, leaking urine, feces, or both. They are at severe risk of infection, often in pain, and sometimes suffering nerve damage that limits their mobility.

It feels like a cold, clinical definition for something so devastating.

In 90% of cases, the baby dies during the traumatic delivery. The mother is left to process the physical trauma with the grief of losing a child; she is often left to endure this pain alone. Misconceptions associate obstetric fistula with witchcraft or a punishment for adultery. The constant leaking and smell means many women live in isolation and shame. Often abandoned by their husbands, family and communities and unable to work, women with obstetric fistula are some of the poorest and most marginalized people in the world.

Standing in the Mabinti Centre, surrounded by women who are healing, smiling, and building friendships, it’s hard to imagine they were once outcasts living in unimaginable pain.

The Mabinti Centre was established by Kupona Foundation’s sister organization, CCBRT (Comprehensive Community Based Rehabilitation in Tanzania). Recognizing that surgery is just the first step to recovery, CCBRT’s holistic approach addresses the psychosocial as well as physical impact of fistula. Each patient receives counseling, family planning resources and health education. CCBRT offers numeracy and literacy lessons to women who do not know how to read and write. Members of the Mabinti Centre team offer crochet lessons, providing women with an opportunity to learn a skill. Every year, over 600 women participate in these sessions.

kupona-foundation-body-image
Photo credit: Sala Lewis

Since 2006, 100 women have completed a training course in sewing, screen-printing, beading, design, English or business skills at Mabinti. These women graduate equipped to start their own business or seek meaningful employment, helping them to build brighter, healthier futures for themselves and their families.

Obstetric fistula is preventable and treatable.

When an expectant mother has access to high quality care, her risk of developing fistula decreases significantly. Since 2010, CCBRT has been improving the quality of maternal and newborn healthcare in 23 medical facilities throughout Dar es Salaam. Thanks to the generous support of our donors and partners, including Fistula Foundation and Johnson & Johnson, CCBRT is one of the largest providers of obstetric fistula treatment in the world, providing over 5,800 fistula surgeries in Tanzania since 2003.

We still have a long way to go. An estimated 3,000 women develop fistula in Tanzania every year. The backlog of women awaiting treatment is in the thousands, so while we work to stop new cases of fistula from developing, we must continue to provide fistula surgery and holistic care to help women recover and thrive after they are treated.

For the women at the Mabinti Centre, they are approaching a new chapter in their story of recovery. Equipped with the skills to move forward, they are building their futures, one stitch at a time.

Interested in learning more? Meet Lidya, who completed her training at Mabinti in 2012 after developing fistula twice. In honor of International Women’s Day on 8 March, consider sharing Lidya’s story and this article on social media or with your contacts.

Cover photo credit: Sala Lewis, Kupona Foundation 

Drawing Out Obstetric Fistula

Post Written By: Abbey Kocan, Executive Director 

The first time I met a woman who was recovering from obstetric fistula surgery, I was faced with a reality I had been sheltered from for far too long. Four years later, while the level of awareness around this condition in the developed world has grown, there is still a lot of work to be done before this critical global health challenge is given a permanent place in the spotlight.

Imagine if, while giving birth, you or your partner faced a complication requiring emergency medical care. Imagine if that care was unavailable, and you lost your baby. You grieve for the loss of the child who was so close to living. You, or your partner, suffer silently, trying to find a way to cope with the physical trauma that leaves you incontinent, unable to work and further devastated by judgment and abuse at the hands of your friends and family.

Photo 2-Kupona
Artwork by: Jac Saorsa

Kupona Foundation’s fistula program has treated patients as young as 12, and as old as 82. Imagine living like this for decades, certain that your pain will continue for the rest of your life. Imagine if this happened to your teenage daughter.

A Silent Tragedy

At Kupona Foundation we often refer to obstetric fistula as a silent tragedy, affecting members of our global community who struggle to make their voices heard even before they are faced with unimaginable trauma. It is made even more difficult to endure by the myths and misconceptions that are held up as fact in their communities. The women living with this condition are hidden from view. As a result, those with the power to change things are oblivious to their struggle.

The site of the last fistula hospital in the United States is now the Waldorf Astoria hotel in New York City. In the early 20th century, the need for fistula treatment in the U.S. dwindled as the quality of our healthcare services improved. Demand dropped to the point where the hospital could be converted into a luxury hotel. This is the dream of all fistula care providers across the world. That, eventually, they too will become obsolete.

Today, on the International Day to End Obstetric Fistula, Kupona Foundation, in partnership with Johnson & Johnson, UNFPA’s Campaign to End Obstetric Fistula, Fistula Foundation, New York University’s Kimmel Center for University Life and the College of Global Public Health, launch the Drawing Out Obstetric Fistula exhibition at the NYU Kimmel Center in New York City. The collection of work by artist Jac Saorsa is designed to shine a light on the experiences of women living with and recovering from obstetric fistula, to raise awareness about the condition, and to mobilize support for the programs and partnerships that work to restore women’s dignity. The women featured all received treatment from CCBRT, Kupona Foundation’s sister organization, at its Disability Hospital in Dar es Salaam, Tanzania.

Photo 3-Kupona
Art work by: Jac Saorsa

Since 2009, Kupona Foundation supporters have contributed over $1.3 million to the treatment and prevention of fistula. Together, we have rebuilt the lives of 3,987 women, and with our support CCBRT has grown to become one of the largest providers of comprehensive fistula treatment in the world. Our hope is that these drawings will open your eyes not only to the reality facing the women living with obstetric fistula, but also to the opportunity facing every one of us to change the status quo.

We imagine a world free from fistula, can you?

The Waldorf Astoria hotel is an iconic reminder that fistula can be treated, prevented and ultimately eradicated. All it takes is a community of like-minded, motivated individuals and institutions coming together and taking action. By attending this exhibition you will become a vital part of this community. Thank you in advance for your support.

Photo 4-KuponaThe Drawing Out Obstetric Fistula exhibition is free to the public from May 23rd-July 4th, Mon-Fri 9am-8pm, Sunday 1pm-8pm (closed Saturday) at the NYU Kimmel Center, Washington Square S, New York, NY. All visitors must present photo ID at reception.

Learn more about the exhibition: www.resilience.gallery

Learn more about Kupona Foundation: kuponafoundation.org

My Mother’s Day Gift

By Elisa Gambino

In the spring of 2013, my husband, Neal Broffman, and I visited Gondar University Hospital in Ethiopia with partners Fistula Foundation and Johnson & Johnson. We interviewed and filmed the work that they are supporting to treat women suffering from obstetric fistula, an injury caused by prolonged, obstructed labor that renders a woman incontinent until she can access reparative surgery. This is an injury that can ruin a woman’s life. The constant smell from her incontinence too often prompts her husband to leave or community to abandon her, relegating her to a life of shame and isolation – for doing nothing more than try to bring a child into this world. Woman who are poor cannot access skilled care because they live in remote areas or they don’t know that they should go to a clinic to deliver.

The first fistula patient I met was Workinesh, who was at the hospital to receive surgery to repair her fistula. Workinesh was with her daughter, who was my daughter Sofia’s age at the time. As I learned her story, I distinctly remember thinking, “Here is a mother with a daughter who is my daughter’s age, and what she’s going through is just so far removed from my life and the things I have to think about.” Workinesh wanted the exact same things for her daughter that I wanted for Sofia.

This trip to Ethiopia was the first time I had met with obstetric fistula patients. The visit moved me so deeply that I shared much of what I saw and learned with my daughter, Sofia. She was equally surprised and saddened by what she learned, but she was also inspired to act, and decided to do something to help. She wrote a letter to Fistula Foundation, a nonprofit that focuses specifically on treating this devastating injury: “Hearing their experiences filming at three hospitals in Ethiopia and Tanzania and learning about the hardships women with this condition face inspired me to raise awareness. I’m a junior at an all-girls middle and high school in Atlanta. Since obstetric fistula affects women and girls, what better place to start talking about it than at my school?”

And then my amazing daughter got to work. She started talking with teachers, friends and fellow students, and spread the word about obstetric fistula and the women whose lives are destroyed by this terrible injury. Donations began to trickle in, but Sofia soon realized that she could raise more money faster by asking people for larger donations. So, on a December weekend just ahead of Christmas, Sofia enlisted Neal’s and my help in baking our favorite family recipe for cranberry cakes. A local florist donated cellophane wrapping and our neighbor donated beautiful bows to make the cakes look festive. Sofia offered the cakes in exchange for a donation of $25 or more – and the donations started flowing! By the end of the year, Sofia had raised over $500!

She managed this project completely, but we made the cakes together, we brainstormed together. And we’ve been working together again this spring to brainstorm and raise funds in order to meet her goal of raising enough funds to support the cost of fistula surgery for three women.

Just a few weeks ago, I was able to return to Ethiopia, where I was able to speak with Workinesh by telephone.  She is doing well, her daughter is in school and she sounded strong and full of energy – exactly how I remembered her. I told Workinesh that I had shared her story with my daughter, and I told her how proud I was that Sofia was working to help heal other women who were suffering. She was pleased.

My daughter inspires me every day by her thoughtfulness and by the way she approaches everything she does with a full, kind heart. Any mother of a teenage daughter will probably agree that moms and daughters do not often share common goals at this point in life, so I cherish every moment we’ve spent together working side by side to help mothers who live half a world away. In a way, this project is the best Mother’s Day gift I could have asked for.

Sofia is planning to continue her efforts until she meets her goal of raising enough money for three surgeries. And her advice to any of you, who might be thinking about following in her footsteps? “Do it! You’re helping people, why wouldn’t you do that?”

Why not, indeed.

Elisa Gambino is a mother, an award-winning journalist and filmmaker who is based in Atlanta.

Why is motherhood in Tanzania about luck?

Written by Samantha Bossalini, Communications and Development Associate, Kupona Foundation

This past March, I visited our implementing partner, CCBRT, in Dar es Salaam, Tanzania. One humid afternoon, I sat with a dozen ladies recovering from surgery to repair the trauma of obstetric fistula. I was surprised by a common thread weaving through each heartbreaking account: luck. For these women, aged 16 to 65-years old, surviving childbirth and becoming a mother had been a deadly game of chance.

Lucky because she survived
Malela had just turned sixteen. She was petite, shy, and her voice grew quiet when she spoke about the day she lost her baby – one of the 39,000 babies who die every year in Tanzania1. In the US, a 16-year-old girl would be thinking about friends, boys, passing her driver’s test and studying for college entry exams. Malela was telling me about the day she lost her baby. After two days of contractions she passed out from exhaustion. Her now stillborn child was removed with forceps and taken away. When she woke, she remembers feeling her flat stomach, and asking, “Where is my baby?” Her mother told her “Your baby died. Now we are working on your urine leaking problem.” Malela’s traumatic delivery left her with obstetric fistula, and a stillborn child whom she never met.

The fact I wrestled with most after meeting Malela was that in Tanzania she is considered lucky; ‘lucky,’ simply because she survived her complicated labor when thousands of women each year do not.

Lucky because her baby lived
As another woman came forward to be interviewed, I asked the nurse if this patient had also lost her child. The nurse shook her head.

“No, her baby survived. She is lucky.”

Salma was 30-years old. When she went into labor, doctors discovered that she wasn’t dilating even after hours of contractions. An emergency C-section saved her daughter’s life, but the hours of obstructed labor created a fistula. As I sat with Salma and her healthy, 3-month-old baby girl, I just kept thinking, why is this about luck?

Rolling the dice.
Fact: 8,000 Tanzanian women die each year due to complications in pregnancy or childbirth2. In Dar es Salaam, one of Africa’s fastest growing cities, women in labor face challenges we can’t imagine in the US. Urban hospitals are so crowded, it is common for four women to share one bed. Mothers deliver their children on the floors of unsanitary, humid wards. Clinics without blood banks lose laboring mothers to hemorrhages. Generators fail, staff are overwhelmed, resources deplete, women die.

It’s impossible for me to reconcile that 8,000 women died last year because they were unlucky. So many of these deaths are preventable. We know what it takes to change that number from 8,000 to zero, and luck has nothing to do with it.

Every mother deserves to meet her newborn child
Thanks to the support of our donors, the dedicated team at CCBRT, and their close partnership with the Government of Tanzania, we are taking luck out of the equation. We are decongesting overcrowded wards, training skilled workers in respectful, high-quality maternal healthcare, and building capacity throughout the Dar es Salaam region. As a result, healthy babies are being delivered to healthy moms.

We invite you to honor the mothers in your life, and help us take luck out of the equation for thousands of women every year.

donate_dkgreen

I have met the women who struggle with the emotional and physical devastation that obstetric fistula leaves in its wake. I’ve heard them share losses, and celebrate the joy of holding their healthy babies – a joy that should be a right, not a privilege. At Kupona, we believe every mother deserves to meet her newborn child. It should not be a game of chance.

As we approach Mother’s Day in the US on May 10th, please take the opportunity to show your support. For every donation made in honor of a mother, her name will be entered into our prize drawing. The winner will receive a gift from the Mabinti Center, winner of ‘Accessories Designer of the Year’ at Swahili Fashion Week 2014! Just type ‘In honor of {insert Mom’s name here}’ in your donation description for her chance to win!

Cover photo: 16-year-old Malela is considered ‘lucky’ to have survived her obstructed labor; c/o Kupona Foundation

[1]  UNICEF (2014). Committing to Child Survival: A Promise Renewed.
[2] Tanzania Demographic and Health Survey (TDHS) 2010, National Bureau of Statistics, Tanzania, April 2011, Dar es Salaam