In the News
The stories of the Worldwide Fistula Fund, the women it serves, and the devastating effects of obstetric fistula have received a large amount of attention from international media outlets. Recent mentions include:
World Fistula Day
by Dr. L. Lewis Wall, May 21, 2014
May 23 is the officially designated “International Day to End Obstetric Fistula.” Obstetric fistula is a devastating injury of childbirth that most people in industrialized countries have never heard of, but it remains an ongoing tragedy for millions of women in poor countries.
An obstetric fistula is a hole between the bladder and the vagina (or, sometimes, between the rectum and the vagina) which develops because obstructed labor has crushed the tissues that normally separate these structures. When a fetus is abnormally large or the mother’s pelvis is too small—or perhaps just because the mother entered labor with the fetus in the wrong position—labor cannot progress normally. Soft tissues become trapped between the fetal head and its mother’s pelvic bones. Eventually, the blood supply is compromised and the tissues die. Usually the fetus dies as well, unable to stand the relentless stress to which it has been subjected.
Life with an obstetric fistula is difficult, depressing, and almost unimaginable to contemplate. The afflicted woman loses all urinary control: the urine simply runs out as soon as it enters the bladder. She is wet day and night. Sometimes she can hide the urine loss; sometimes she cannot. The psychological damage that a fistula does to her self-esteem and body image is enormous. She frequently has other problems as well: ulcers and skin breakdown, odor, social stigma and ostracism, loss of social life and religious participation.
Around 5% of all pregnant women will develop potentially obstructed labor, but in developed countries the progress of labor is carefully monitored by doctors and midwives. When a woman’s labor does not progress normally, this is detected promptly and appropriate obstetric interventions take place. Often (but not always) this leads to cesarean delivery before the problem becomes too far advanced. In sub-Saharan Africa and south Asia, however, the quality of obstetric care is often poor. Many women labor at home with untrained midwives and when problems arise they can’t get the cesarean delivery they need. The result is high rates of maternal death and large numbers of birth-injured women, many of whom develop an obstetric fistula.
Fistulas will not heal without surgery. The Worldwide Fistula Fund www.worldwidefistulafund.org operates a fistula center in Danja, Niger staffed by a well-trained and dedicated African surgeon, Dr. Itengre Ouedraogo. In 2013, 249 women received free surgery and rehabilitation there for obstetric fistulas and related complications. While this is only a “drop in the bucket” of the world fistula problem, the Danja Fistula Center transforms lives and shines as a beacon of hope in the world’s poorest country. With your help, WFF can expand its work in Danja and support other fistula-related programs in Uganda and Ethiopia.
Let’s work towards the time when we no longer need to have a “World Fistula Day.” L. Lewis Wall, MD, DPhil, is Professor of Obstetrics and Gynecology (School of Medicine) and Professor of Anthropology (College of Arts and Sciences) at Washington University in St. Louis, MO. He has been awarded a Fulbright Scholarship to the College of Health Sciences at Mekelle University in northern Ethiopia.
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The comments of Maggie Bangser, a founding director of the Women’s Dignity Project (letter, July 18), in response to Nicholas D. Kristof’s July 14 column about obstetric fistula, make the valid point that the ultimate solution to these catastrophic complications of childbirth is the creation of effective medical delivery systems that meet women’s reproductive health care needs.
That is precisely the reason the Danja Fistula Center, built by the Worldwide Fistula Fund, has incorporated anthropological field research, prenatal care, public health outreach, case identification, and social rehabilitation and job skills programs into its comprehensive program for women with obstetric fistulas in Niger.
In impoverished countries, where governments struggle to provide even minimal public services, private-sector and nonprofit organizations may actually lead the way in developing effective programs that can be models for future development.
L. LEWIS WALL
St. Louis, July 20, 2013
The writer, a professor of obstetrics and gynecology and of anthropology at Washington University in St. Louis, is the founder of the Worldwide Fistula Fund.
Where Young Women Find Healing and Hope
DANJA, Niger — THEY straggle in by foot, donkey cart or bus: humiliated women and girls with their heads downcast, feeling ashamed and cursed, trailing stink and urine.
Some were married off at 12 or 13 years old and became pregnant before their malnourished bodies were ready. All suffered a devastating childbirth injury called an obstetric fistula that has left them incontinent, leaking urine and sometimes feces through their vaginas. Most have been sent away by their husbands, and many have endured years of mockery and ostracism as well as painful sores on their legs from the steady trickle of urine.
They come to this remote nook of Niger in West Africa because they’ve heard that a new hospital may be able to cure them and end their humiliation. And they are right — thanks, in part, to you as Times readers.
There is nothing more wrenching than to see a teenage girl shamed by a fistula, and I’ve written before about the dreams of a couple of surgeons to build this fistula center here in Danja. Times readers responded by contributing more than $500,000 to the Worldwide Fistula Fund to make the hospital a reality. Last year, the Danja Fistula Center opened.
This is my annual win-a-trip journey, in which I take a university student along on a reporting trip to shine a spotlight on global poverty. So with my student winner, Erin Luhmann of the University of Wisconsin, I dropped in on Danja to see what you as readers have accomplished here. What we found underscored that while helping others is a complicated, uncertain enterprise, there are times when a modest donation can be transformative.
The first patient we met is Hadiza Soulaye; with an impish smile, she still seems a child. Hadiza said she never went to school and doesn’t know her birth date, but she said that her family married her off at about 11 or 12. She knows that it was before she began to menstruate. She was not consulted but became the second wife of her own uncle.
“I didn’t know what had happened,” she remembered. “I just knew that I couldn’t control my pee, and I started crying.”
Hadiza found herself shunned. Her husband ejected her from the house, and other villagers regarded her as unclean so that no one would eat food that she prepared or allow her to fetch water from the well when others were around. Villagers mocked her: “They would laugh at me and point to my dress,” which was constantly wet with urine.
She endured several years of this ostracism. Worldwide, there are some two million fistula sufferers, sitting in their homes feeling ashamed, lonely and hopeless.
A few months ago, Hadiza heard about the Danja Fistula Center and showed up to see if someone could help. Dr. Steve Arrowsmith, a urologist from Michigan who helped plan this center and has repaired more fistulas than any other American, operated on Hadiza and repaired the damage. He warned her not to have sex for six months to give the repair time to heal.
It typically costs $500 to $1,000 to repair a fistula and turn these women’s lives around. There is no one more joyous than a woman who has undergone this surgery successfully, and Hadiza was thrilled to return to her village.
Yet life is complicated. When she returned home — dry and cured — her husband summoned her to his bed.
“I didn’t have a choice,” she says. “I was his wife.”
The husband tore open the fistula, and she began leaking urine once more. He then threw her out of the house again, so now Hadiza is back at the hospital. She vows that this time, if she can be patched up, she will never return to her husband.
As in Hadiza’s case, a fistula is often a result of a child marriage. Here in Niger, about three-quarters of girls are married before the age of 18.
“Some of these ladies here have never had a period,” Dr. Arrowsmith noted. “They became pregnant the first time they ovulated, and then their uterus was destroyed.”
Aside from repairing fistulas, the Danja center also conducts outreach to improve maternal health and encourage women to deliver in clinics. It has set up a system so that taxi drivers are guaranteed payment when they take a woman in labor to a hospital.
The Danja Fistula Center is also conducting research on how best to treat patients. One approach pioneered here may allow fistula hospitals to move patients out of recovery wards in half the time, effectively doubling capacity.
The fistula center was conceived by Dr. Arrowsmith and Dr. Lewis Wall, an obstetrics professor at Washington University in St. Louis, and it partners with Serving in Mission, an American Christian charity with long experience here in Danja. It also gets backing from the Fistula Foundation, based in the United States. But, in line with the original vision, the Danja Fistula Center is run by Africans, with Dr. Arrowsmith training Dr. Itengré Ouedraogo, a surgeon from Burkina Faso, to be medical director.
Fistulas may be a grim topic, but this center you readers have helped to build is a warm and inspiring place. Women who have suffered for years find hope here, and they proudly display skills they are learning, such as knitting or sewing, that they can use to earn a living afterward. As they await surgery, their dormitories echo with giggles and girl talk. They are courageous and indomitable, and now full of hope as well.
This fistula center continues to exist on a shoestring, struggling for operating funds. But the exuberance of the patients is contagious, and I wanted readers to know that your generosity has built a city of joy. These women may arrive miserable and shamed, but they leave proud, heads held high. And in a complicated world of trouble, that’s a reason to celebrate.
Saving the Lives of Moms
This is a Mother’s Day tribute to a mighty woman and to the doctor who gave her back her life — and also a celebration of a grand new women’s hospital that you as readers helped to build.
The woman is Mahabouba Mohammed, an Ethiopian who was raped at about age 13. She gave birth alone: after many days of labor, the baby was stillborn and she suffered an obstetric fistula.
A fistula is just about the worst fate that can happen to a woman or girl. It’s a childbirth injury that causes her to leak urine or feces continuously through her vagina. In Mahabouba’s case, she also suffered nerve damage in both legs so that she couldn’t walk.
More than two million women and girls have fistulas worldwide. They are the lepers of the 21st century, among the most voiceless and shunned people on earth. Fistulas were once also common in America (a fistula hospital was once located in Manhattan where the Waldorf-Astoria Hotel is now), but today they normally afflict only people in poor countries of Africa and Asia.
Mahabouba smelled foul, and villagers thought she had been cursed by God. They put her in a hut at the edge of the village and took off the door — so the hyenas would get her that night.
When the hyenas came, Mahabouba used a stick to fend them off. The next morning she set off crawling to get to an American missionary who lived more than 30 miles away. The missionary took her to the Addis Ababa Fistula Hospital, where she met Steven Arrowsmith, an American urologist from Grand Rapids, Mich.
Arrowsmith, now 54, has devoted his life to helping women and girls with fistulas, and he has almost certainly repaired more fistulas than any other American doctor. But Mahabouba’s case was unusually complicated — much of her tissue had rotted away — and she was in a deep depression.
“It was painful to be within three feet of her, because she was so miserable,” Arrowsmith recalled. She was also illiterate and did not understand the main Ethiopian language or the ways of cities.
He laughs now as he recalls the time his wife, Jan, a family physician, took Mahabouba to a prosthesis shop to get a leg brace so she could try walking again. Everybody else in the store had lost a leg or two from land mines, and Mahabouba grew panicky. Fearing that she was about to have her legs sawed off, she tried to flee.
In the end Arrowsmith performed a $450 surgery on Mahabouba to repair her fistula. While she recovered, she began to help out in the ward. Smart and capable, she was given more responsibilities, and by the time I met her in 2003, she was on the hospital’s nursing staff. She’s a wonderful example of how such women can be turned from squandered assets into productive resources.
Mahabouba has become very close to the Arrowsmiths, calling them Mommy and Daddy. When she won an apartment in a lottery in the Ethiopian capital, she was thrilled because, as she told the Arrowsmiths, “Now that I have a place, I can take care of you when you’re old.”
Then there was the Liberian woman who, after her fistula was repaired, named a grandchild “Doctor Steve.” In Niger, the women have affectionately named Dr. Arrowsmith “Chief of Urine” — and all this makes him think that he has the world’s best job.
“People in America can’t believe I left urology to do this, but this is about changing lives,” which is better than “listening to men tell me about the quality of their erections,” he said. “I’ve had my family held at gunpoint, I’ve had malaria, I’ve had a serious exposure to H.I.V., I’ve been separated from family, and I’ve spent about a million hours crammed into coach class on airlines, but it’s worth it. I’d much rather live a meaningful life than a comfortable one.”
Left untreated, women and girls with fistulas become pariahs. Their husbands divorce them, and they are moved to a hut at the edge of the village. They lie there in pools of their waste, feeling deeply ashamed, trying to avoid food and water because of the shame of incontinence, and eventually they die of an infection or simple starvation.
But there’s renewed hope for these women. The Fistula Foundation has been underwriting corrective surgery in many countries, and the United States Agency for International Development is helping as well. Representative Rosa DeLauro, a Connecticut Democrat, says she will introduce a bill on Tuesday that would create a program to eradicate fistulas worldwide.
For years, Dr. Arrowsmith has been dreaming — along with Dr. Lewis Wall, a fistula expert at Washington University School of Medicine in St. Louis — of establishing a fistula hospital in West Africa. After I wrote about their organization, the Worldwide Fistula Fund, a couple of years ago, Times readers responded with an outpouring of support — some $500,000.
This is what your contributions achieved: The hospital recently opened in Danja, Niger. More than 60 women with fistulas were waiting at the ribbon-cutting, and a surgeon from the nearby country of Burkina Faso is working through the backlog.
The hospital has also started an outreach program to provide prenatal care, family planning and other help for maternal and child health. The aim is to save lives as well as prevent fistulas.
NOW Dr. Arrowsmith and Dr. Wall are trying to raise $500,000 in annual operating costs so that the hospital can perform up to 1,000 fistula repairs a year.
“It’s a very small amount of money for the difference it can make in somebody’s life,” Dr. Wall said. “The problem is that an amount like that, less than the cost of an iPad in the States, is too much for the average African who suffers from the problem.”
This Mother’s Day, we’ll spend $18 billion on flowers, dinners and spa treatments — all of which is merited. But it is also an occasion to celebrate much more modest gifts that have created a hospital with transformational power.
You see the power of such a gift when you watch Mahabouba attend to frightened, ashamed teenage girls with fistulas. And Mahabouba will soon spread her wings further: the new fistula hospital plans to bring her to Niger so that she can help train the nursing staff, paying forward the gift that she received.
“The new fistula hospital in Niger is a tribute to the heroic doggedness of Dr. [Lewis] Wall, and with luck it will be replicated in many other countries. Anybody who has seen a fistula patient after surgery — a teenager’s shy, radiant smile at something so simple as being able to control her wastes — can’t conceive of a better investment.”
Nicholas D. Kristof
New Life for the Pariahs
The New York Times
“For years, I’ve watched with admiration as Dr. [Lewis] Wall has persevered to try to build a fistula hospital in West Africa — and I’m thrilled that he is now fulfilling his dream. Those who want to help his Niger hospital can support his organization, the Worldwide Fistula Fund; tax-deductible donations to the hospital are possible right on the site, so please don’t send any money in my direction. For now the surgeries in Niger will be done in the existing leprosy hospital there, and he still needs significant sums to construct the new fistula wing beside it.”
Nicholas D. Kristof
A Heroic Doctor, A Global Scourge
The New York Times
“WFF is the first American organization focused solely on fistula. [Dr. Lewis] Wall and [Medical Director] Steve Arrowsmith have performed thousands of fistula repairs since the 1980s. Arrowsmith has a sense of humor about his expertise. ‘I used to tell everybody I was one of the top five fistula surgeons in the world. There were only four of us, but I was definitely right up there in the top five.’”
Hope for the Most Voiceless on the Planet
- Organization Spotlight: Worldwide Fistula Fund, The Conscious Perspective
- Danja Fistula Center Opens in West Africa, Campaign to End Fistula
- Africa: Obstetric Fistula Fact Sheet, AllAfrica
The Worldwide Fistula Fund sends out e-newsletters to inform our supporters of progress made, recent news and organizational updates. Please sign up for the WFF newslettter today and enjoy access to past issues below:
- Happy Mother’s Day From The WFF and the New York Times!
- Looking Forward on International Women’s Day
- Community Celebrates the Opening of the Danja Fistula Center
- History in the Making: The Danja Fistula Center Opens Its Doors
- Ending 2011 With a Bang!
- Ten Days — and Ways — of Giving
- Mark the Calendar: A Special Day in Nigerien History
- Giving Thanks for Your Ongoing Support
- Opportunity: A Basic Human Right