Fistula, a devastating condition related to childbirth, affects 2 million women worldwide. A solution is within reach.
May 19, 2008–Last year, when I gave birth to my daughter and then experienced a range of complications that rivaled a plot line from the television show “House,” I was shocked that such a thing was possible. Upon my release from the hospital, my doctor came to me and said, “Half a million women die every year from childbirth and its related complications. You were almost one of them.”
Even then, I thought he must have been exaggerating. How can it be, in this day and age, that 500,000 women a year die in childbirth? But it’s true. The World Health Organization estimates that 1,600 women die every day from complications in pregnancy and childbirth, bringing the annual total to over 580,000. And that doesn’t include millions more women who face serious complications from childbirth that have devastating effects on their lives.
Among the most serious life-threatening conditions related to childbirth is fistula, a vaginal rupture caused by prolonged, obstructed labor. In the U.S. and, fistula has been almost eradicated. New York’s famous Waldorf-Astoria Hotel stands on the grounds of what was the first fistula hospital in the world. It opened in 1857 and closed its doors in 1895; fistula has not been a maternal health issue in for over 100 years.
But the condition is still common in sub-Saharan Africa, Asia and the. In the countries where it is still prevalent, lack of medical equipment and expertise can escalate an obstructed labor into a medical emergency. Sometimes the labor lasts for days at a time.
The resulting delivery causes a rupture between the vagina and bladder or the vagina and rectum. Those who survive face ongoing indescribable pain and incapacitating leakage of urine and feces that renders them outcasts in their communities. And in almost every case, the woman loses her baby.
It is believed that 2 million women are living with fistula in the world today. Sarah Omega Kidangasi was one of them. She was a 19-year-old Kenyan schoolgirl when she became pregnant as the result of rape. Like many fistula victims, she lived in a small village, far away from a hospital with the equipment and personnel to deal with a complicated pregnancy.
“Due to the distance, I was late to reaching the health facility,” said Sarah, now 31. “I’d been laboring for 18 hours. It was unfortunate, in that village, they were lacking some of the equipment. I was transferred to another facility, a mission hospital, and I gave birth to a stillborn baby boy who weighed 4.8 kilograms [10.6 pounds]. Three days later, I was leaking urine, and I realized that I had developed fistula. I stayed in the hospital for two months, and I was discharged in the same condition.”
Sarah’s ordeal began in earnest when she returned to her village, where the leaking made her an outcast. This triple punishment of losing a child, living with a hole between her vagina and bladder and being isolated from her community is common, according to Kate Ramsey, global coordinator of the U.N.’s campaign to end fistula, which is now active in 45 countries. “In some countries, there’s a misperception that women did something wrong, that she was adulterous,” said Ramsey.
Fistula typically affects women who are the least prepared to cope with such an illness. It occurs most frequently in first pregnancies where the mothers are young. And because of the cultural climate of the countries in which it is most prevalent, it also often occurs in arranged marriages where the man is much older and the bond between the husband and wife is weak. In these cultures, when a woman cannot bear children, her status in the marriage and in the community is immediately lowered.
If a woman is the victim of rape, as Sarah was, or is rejected by her husband, the woman’s birth family will bring her back to the household. But even then, the woman is set apart.
“Many of these households are quite small, and the smell of the urine can be quite overwhelming,” said Ramsey. “Caring for a fistula patient can be difficult even for loving family members. She can’t participate in normal daily life, she can’t cook, or farm or fetch water—she’s considered unclean. In some families, she can’t pray or eat with the family because she’s considered unclean.”
Sarah had been living with fistula for 12 years when the pressure of her situation began to consume her, “I suffered rejection, isolation. I lived the lonely life,” she said. “Life with fistula traps you. It makes it impossible for you to interact with others. I was suffering from depression. Many times, I considered suicide.” In 2007, Sarah was taken to a teaching hospital by a neighbor where she received psychiatric support and corrective surgery.
Fistula repair is actually a straightforward surgery that has been done in the U.S. andfor years. But after Sarah lost her child and suffered fistula, her local hospital told her there was no remedy.
Like Sarah, many victims of fistula are young and victims of rape. Girls under the age of 15 are five times as likely to die in childbirth or suffer a complication such as fistula than are women in their 20s.
“In a lot of the countries we’re working in, women have such low status,” said Ramsey, who added that the reason there is not more of a global awareness of the condition is that it affects women who don’t have a voice in their communities and countries. “When we make the procedure available and provide transportation,” she said, “the women come out in droves. In one country we visited—I’d rather not say which one—the doctors said, ‘We don’t have fistula anymore.’ But the centers were built, and women came forward. One woman gets the surgery, she goes home and seven more women from her village come.”
What is stunning is that the cost of fistula surgery and the rehabilitative care is only $300.
However, to put that sum into context, in Sarah’s Kenyan village, the average family makes less than a dollar a day. Since 2003, the U.N. campaign to eradicate fistula has raised more than $25 million and improved the lives of millions of women in the process. “The surgery really changed my life,” said Sarah. “That was the moment I could offer a genuine smile.”
These days, Sarah hopes to have the life that was denied to her, first by rape and then by fistula. “I hope to get married and have more children,” she said. For now, she is focused on spreading the message about fistula and getting maternal care on the international health agenda—no small matter given the way that fistula, an uncomfortable subject to discuss under the best of circumstances, intersects with gender issues in developing nations.
For Sarah to even tell her story is a political act. Talking with The Root was her first American media experience. This week she will tell her story to members of Congress to further raise awareness about the condition that has dominated her life and that of millions of other women. “I’m going beyond our African culture and tradition, going public and telling my story, so that the victims know that there’s help,” she said. “Fistula can be repaired.”
To learn more about how you can help put an end to fistula, please visit the Campaign to End Fistula.
For more information about the campaign to end fistula please contact One by One.
Veronica Chambers is a journalist, editor and author of several books including The Joy of Doing Things Badly: A Girls’s Guide to Love, Life and Foolish Bravery and Having it All? Black Women and Success.
(Article courtesy of The Root: http://www.nytimes.com )