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A Brighter Future
Restoring Dignity to Women
with Obstetric Fistula
By Marielena Zuniga
Terefa* was 13 when her labor pains started. Poor and living in a rural African village, she had no access to medical care. When the contractions became more violent and painful, her mother, mother-in-law and traditional birth attendant were called.
Slipping in and out of consciousness, the girl was exhausted from labor. Her pelvis was too small to handle the delivery and the baby could not come out. The village elders finally decided that Terefa needed to get to a hospital. But that was miles away and she had no money.
Collecting whatever cash they could, the villagers found a cart to carry Terefa to the road and then pay a driver to take her to the hospital. But she had waited too long. Her baby was dead. She also needed a Caesarean section to remove her dead child.
After that operation, Terefa returned to her village devastated at the loss of her child. But her nightmare was just beginning. Urine and feces were dripping down her legs. At first she thought the leaking would go away. But it didn't. Her eyes downcast, she was ashamed that she constantly smelled. Not able to withstand the stench, her husband eventually took another wife. Her village shunned her.
Today, Terefa is 14. She and her mother live in a hut with a dirt floor at the edge of the village. The two women beg for food to survive. Each day Terefa's health becomes less certain and no one knows how much longer she will live.
As little as six years ago, the world would not have known about Terefa or even heard about obstetric fistula. The condition occurs as a result of several days of obstructed labor without timely medical intervention, usually a Caesarean section. The constant pressure of the baby's head in the birth canal causes a fistula (hole) to form between the bladder and the vagina, and/or between the rectum and the vagina. The baby usually dies. And the mother is left with urine and waste leaking from her body. She soaks clothes and mattresses, burns incense to hide the smell and is often isolated, abandoned and divorced.
Unless a woman has access to a hospital to receive fistula repair surgery—which in the Western world is a paltry sum of $300-$450 but is a lifetime of savings to an impoverished woman—she lives with the injury until she dies.
"Most of us take for granted that we will have a doctor or midwife by our side if something goes wrong during childbirth," says Kate Ramsey, technical specialist with the global Campaign to End Fistula of the NYC-based United Nations Population Fund (UNFPA). "We don't realize there are so many women who don't have this access to care. If you're in a remote village you don't have money to call a taxi and may have a man carrying you on a stretcher for two days to get to a hospital. It's a real tragedy that a woman has to give her own life in the process of trying to give new life."
The stories are heart-wrenching. One African woman pushed out only her baby's head before collapsing from exhaustion in her hut. Her brother balanced her on a donkey to a nearby road, where a bus driver demanded 10 times the usual fare to get to the hospital. Her dead baby's head hung between her legs, as the woman half-sat, half-stood through the trip, her urethra ripped open.
Hidden women, hidden suffering
Until the beginning of this century many women around the world had obstetric fistula. The first fistula hospital built especially for women with this injury was in New York City, where thousands of women were cured in the late 1800s. As medical advances improved, obstetric fistula disappeared from wealthier nations.
Today, obstetric fistula affects an estimated two million women, primarily in South Asia and sub-Saharan Africa, with 50,000 to 100,000 new women suffering with the injury each year. But no one really knows the numbers. Most women never get to clinics and the last study conducted by the World Health Organization (WHO) was 16 years ago. Figures could be as high as 800,000 in Nigeria alone, and more than 70,000 in Bangladesh.
Obstetric fistula has remained hidden, the experts say, because women and girls in developing nations are hidden, the poorest of the poor, and without a voice. "Their experiences of life are hidden from view overall and then once they have fistula, they are even more isolated," says Maggie Bangser, director of The Women's Dignity Project (WDP) of Tanzania, working to prevent and manage obstetric fistula.
The roots causes for the condition are interlinked, says Bangser and other advocates. Poverty, malnutrition, poor health services, early marriage and gender discrimination all contribute to women suffering with obstetric fistula. Poverty reduces a woman's chances of receiving timely obstetric care and her low status in communities denies her the power of when to start bearing children. Many marry young, when their pelvises are too small and contribute toward obstructed labor.
But older women and those who have borne other children also can be affected, like Rehema** of Tanzania, who got fistula at the time of her third pregnancy. She delivered at home and had a breach birth. The baby died and Rehema lived with fistula for 30 years, depressed and on the verge of suicide. After two surgeries, she finally had the fistula repaired and today is dry and finally free of leaking.
Saving, selling what they can
When afflicted with obstetric fistula, some girls and women are entirely abandoned, while some are forced to live and work in isolation. Others have supportive families, but struggle to be accepted within their communities. Many don't even know that treatment exists, and even then, must find money and transportation to a hospital which may be days away.
Those women fortunate enough to get to hospitals have a father, mother, or in some cases, a husband who will sell that goat or cow to get them the money they need, says Kate Grant, executive director of The Fistula Foundation in Santa Clara, CA, the funding source for the Addis Ababa Fistula Hospital in Ethiopia. "The stories are horrendous. Women spend years trying to get to the capital city, begging from bus stop to bus stop," she says.
Other women save money for years so they can pay for transport and medical treatment for fistula repair. "I'm in awe of the resilience of these women," says Ramsey. "Even after all the suffering they've been through they will do anything to get treatment. A woman I met sold her only pair of earrings, her only asset, to pay for the bus to go for treatment."
Bangser agrees. While the shame and stigma for these women can be powerful, so is their strength. "Despite the tremendous stigma, these women continue to work and care for their families and themselves. They manage the significant responsibilities that poor women typically shoulder, such as finding water, hauling firewood, cooking and caring for children," she says.
The sad reality is that too many women live too long with fistula before they are ever able to access care, Bangser adds. "I believe that if advocacy on fistula is done and expectations for repair are inevitably raised, then there is a moral imperative to ensure that treatment is available regardless of a woman's ability to pay," she says.
Inadequate health-care
When women can get to a health-care facility, they face even more obstacles. In 2003, EngenderHealth, a reproductive health group working in more than 80 countries, partnered with the UNFPA to conduct a needs assessment in nine African countries. That study found hospitals poorly equipped and lacking trained physicians in fistula surgery. In Uganda, one visiting doctor worked day and night, but could only operate on 20 of the 200 women who came for treatment.
"When a woman with fistula finally gets to a hospital, the equipment is not there or the providers have not been trained to look after the woman for fistula surgery," says Dr. Joseph Ruminjo, senior clinical manager with EngenderHealth based in New York City. The Kenyan surgeon has witnessed situations where needed supplies were not available.
"A woman may come in labor, but you don't have the materials, some of the things we take for granted in the U.S. and other countries. Sometimes you don't even have suture materials," he says.
For those fortunate women who do have fistula surgery, the success rate is 90 percent, says Dr. Ruminjo. "It's one of the few procedures that can really turn a woman's life completely around. These women with fistula are strong. They don't look at themselves as victims. They're survivors, even though they've been ostracized and discriminated against because they smell and are constantly leaking. But once the fistula is repaired, especially if repaired early, they regain self-esteem and self-worth."
Global partnerships to end fistula
In an effort to prevent and treat the condition worldwide, the UNFPA and partners launched the global Campaign to End Fistula in 2003 with the goal of making obstetric fistula as rare in developing countries as it is in the industrialized world. The target date for fistula elimination is 2015, in line with the Millennium Development Goals target to improve maternal health.
Working in almost 40 countries in Africa, Asia and the Arab region, the campaign focuses on prevention, treatment and rehabilitation. Its partners include governments, health-care providers and organizations, such as EngenderHealth, One by One and the Women's Dignity Project, among others.
In the last three years the campaign has brought fistula to the attention of an international audience, raising more than $15 million from a variety of public and private donors. Monies go toward programs, such as the Fistula Repair Centre at the Dhaka Medical College in Bangladesh that has a staff of 50 doctors and 36 nurses now trained in treating the disability. The UNFPA also partnered with surgeons from Stanford University to conduct training workshops in Eritrea to strengthen that country's capacity to treat fistula.
Other organizations continue their efforts as well. The Women's Dignity Project, for example, grew out of the first comprehensive fistula initiative in Tanzania, established in 1995 at the Bugando Medical Centre. Time and again, Bangser says, the patients there shared that fistula is not simply a medical problem.
"Their stories illustrate how fistula results from a long line of socio-economic and political problems that affect people living in poverty," she explains. "Since 2001 the WDP has helped to establish fistula on the national and international agendas and built high-level coalitions with leading international agencies committed to working on the issue."
A hospital ahead of its time
Before fistula became a concern on the international scene, Dr. Catherine Hamlin, now in her 80s, and her late husband, both Australian gynecologists, were treating women with fistula at the Addis Ababa Fistula Hospital in Ethiopia that they founded in 1974. Since then 25,000 women have had fistula repair, with the hospital treating 1,200 women each year, free of charge.
Dr. Hamlin, who was nominated for a Nobel Peace Prize, appeared on the Oprah Winfrey Show in January 2004, bringing more global attention to fistula. Providing fistula repair, prevention and education for women, the main hospital is also a training ground for surgeons. In addition, five mini-clinics in remote areas of Ethiopia are being built so women don't have to travel days to receive care.
After fistula surgery, women also need psychosocial support. About 90 percent of the women who arrive at Addis Ababa Hospital are clinically depressed, says Grant of the Fistula Foundation. "A woman who has been ostracized starts to see herself as a modern-day leper and is going to have emotional and psychological needs that must be met as well."
Offering this support, the hospital also provides literacy training to the women, most of whom can't read or write. As they are recuperating from surgery, they are provided with portable audio players. "This gives them instruction on safe motherhood and what they need to do to be ambassadors for safe motherhood in their villages. We try to use each of these women as a locus of information when they go back," Grant says.
Helping women one by one
Heidi Breeze-Harris was three months pregnant and home sick one day when she happened to catch Dr. Catherine Hamlin on the Oprah Winfrey Show. Like most viewers, she had not heard of this childbearing injury, and was profoundly moved.
"I thought, ‘This is crazy to have a woman walking around with no life and to have a surgery be that inexpensive, relatively speaking.' It woke something up in me that enough is enough," she said. "Women and girls are getting the short end of the stick and I'm either going to complain and drive people crazy or get into action."
Get into action she did, and with Katya Matanovic, she founded One by One based in Seattle, Washington, "harnessing the ‘smaller' and otherwise disparate energies of those who want to help but don't know how." Ironically, Breeze-Harris herself had an obstructed labor with her son, a dramatic delivery resulting in a C-section and a second surgery for massive internal bleeding. Both mother and child are well now, but that experience helped her better understand the anguish of women with obstetric fistula and made the cause even closer to her heart.
"I can't imagine, number one, if I had lost the baby. Second, I can't imagine everyone telling you it's your fault and all the other shameful things that go along with this. And then, to have this injury, this fistula, which is so debilitating, you're not able to work and to have people push you aside. And to think that women are in labor like this in rural places with little assistance and even if they can get help, it's two days away. I couldn't imagine the physical and psychological pain they were in."
Too many dying in childbirth
While organizations are doing what they can to help, many advocates see fistula as a barometer for maternal health worldwide. Sadly, there has been no change in maternal mortality ratios in 19 years, says Ramsey. Each year, 529,000 women still die in childbirth, according to WHO. "We see fistula as important in its own right, but people need to understand there are so many women suffering because they don't get good maternal health care," she says.
Ruminjo agrees. It's important, he says, to see how fistula fits into other issues of safe motherhood. "The end point is to have a woman in good mental, physical and emotional health and her baby in good health," he says.
While many groups are working toward that end, more needs to happen say advocates, not only fundraising for fistula repairs, but understanding how fistula's roots lie in basic political, economic and social inequities. There also needs to be more awareness and information about reproductive health and obstetric fistula, the experts say, as well as organizing better transportation to health-care sites, providing hospital equipment and training surgeons, and offering support services to fistula survivors who have intense feelings of self-loathing and depression.
Meanwhile, millions of women like Terefa, are suffering and dying. Others are still waiting, like one Ethiopian woman, who heard she could be treated free of charge at the Addis Ababa Hospital. She never knew her fistula could be repaired. Learning she could be mended, she cried, tears trickling down her cheeks. "I would be so happy to be with people again," she said.
Terefa's story was condensed from a 2006 World Health Organization publication.
** Rehema's story was condensed from Faces of Dignity, a publication of The Women's Dignity Project. |
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