Mahabouba*, age 14, was sold into a marriage as a second wife to a man 50 almost years her senior. Raped and beaten repeatedly, she ended up pregnant, finally succeeding in running away 7 months into her pregnancy. Fleeing to the nearby town, she found that the people there threatened to return her to her husband, so she ran back to her native village in Ethiopia. However, her immediate family no longer lived there. An uncle eventually took pity on her and provided her with housing. When Mahabouba went into labor, lacking resources, she tried to deliver her baby herself. Her pelvis was still too small for the baby's head to pass through, and she ended up in obstructed labor for 7 days before a birth attendant was finally called in to assist. By this point, the tissue of between the baby's head and Mahabouba's pelvis had become necrotic due to lack of blood flow. The baby was stillborn and Mahabouba had developed a fistula--a hole had formed between the tissue in her vagina and her rectum. She had no control of her waste elimination, and couldn't even stand up due to damage to her nerves.
Her uncle wanted to help her, but the common belief was that women who experienced such tragedies were cursed by God. She was moved to a hut at the edge of the village and left to fend for herself against circling hyenas. Eventually, still unable to use her legs, she crawled to another village searching for help. Found by a missionary, she was taken to the Addis Ababa fistula hospital. The damage to her body was too severe to completely fix, but she received a colostomy which allowed her to at least live in society, and eventually she became a nurse's aide at the hospital.
Mahabouba's story, on the grand scale of things, is a success story. It's estimated that up to 3.5 million women currently suffer from fistulas, with somewhere from 50,000 to 130,000 new cases each year--and most of them go untreated. Because many of these happen in rural areas lacking health care providers, it's difficult to get at exact numbers, and there is little push to obtain them. A woman quoted in Kristof and WuDunn's "Half the Sky," an Australian gynecologist who has worked in Ethiopia for more than 30 years, notes that women with fistulas "are the women most to be pitied in the world...They're alone in the world, ashamed of their injuries. For lepers, or AIDS victims, there are organizations that help. But nobody knows about these women or helps them."
A new paper aims to change that. Out today in PLoS Neglected Tropical Diseases, Dr. L. Lewis Wall of Washington University in St. Louis argues that obstetric fistula should be included among the neglected tropical diseases (NTDs), which currently include a variety of infectious conditions. NTDs typically are present in warmer climates, and they disproportionately affect the "bottom billion" of the world's population--the poorest of the poor. They also lack attention from the research community, particularly when it comes to funding priorities.
Though obstetric fistula isn't an infectious disease, it certainly fits the other parameters for a NTD. "The emphasis on infectious diseases has meant that other important forms of morbidity and mortality have been neglected," explained Wall via email. "Surgical services are not high on the list of most public health interventions and infectious disease specialists and public health workers are, in general, ill-equipped to deal with surgical issues or obstetric issues. This would mean focusing attention on a huge category of human need that is also neglected as are the traditonal NTDs and could mean a significant uptick in funding for programs to deal with maternal health generally, and obstructed labor/obstetric fistula particularly."
Indeed, history has shown that obstetric fistulas are fairly easy to prevent and treat, given the proper medical personnel and training. Once common in the United States (the Waldorf-Astoria hotel in Manhattan sits on the site of the first fistula hospital in the U.S.), Wall points out that they are now rare enough here that they merit case reports in the medical literature. Why are they so uncommon? Primarily, very few women in the U.S. are so unattended in childbirth that they would go days in labor without intervention. Rather, most would have a Cesarean section to remove the baby and thus the fistula wouldn't develop in the first place. Access to this intervention is severely lacking in women in developing countries. "The Cesarean rate in the United States is over 30% (for various reasons) but in many African countries, the rate is less than 1%; well below the 6% needed to meet minimal maternal health needs," points out Wall.
For women who do develop fistulas, surgical treatment has a high success rate--and is cheap. One of the tragedies of obstetric fistula is that the surgery to treat the injury in many cases costs only around $420--for less than the cost of a fancy TV, you could give a woman back her life. Still, that's far above what most women in developing countries can afford to pay. Furthermore, even if every woman could afford treatment, "the surgical capacity to treat current fistula cases is woefully inadequate; probably only 10,000 cases per year, with 3-10 times that many new cases," says Wall.
Unfortunately, there are painfully few treatment centers in developing counties. In addition to the facility in Ethiopia, Dr. Wall is also one of the founders of the Danja fistula center in Niger, which opened its doors earlier this year. There are others scattered throughout continent, but given the rarity of surgical expertise and the frequency of obstetric fistula, the need far outpaces the personnel available. Nevertheless, early attention and surgical intervention are both needed. Wall notes, "The most important thing is identifying prolonged labor and intervening before a fistula develops. There are pilot studies using village health workers to identify women who do not delivery in a timely fashion and to route them to centers for more advanced obstetric care, but these are few and far between. There are programs to train emergency medical technicians who can perform Cesarean sections without being fully qualified doctors; there has been some success with this. With rare exceptions, however, fistula surgery requires surgical skill, long training and experience, so healthcare systems must develop the capacity to perform this kind of work, even when patients are not popular or wealthy enough to 'pay' for services."
While obstetric fistula mirrors many other NTDs, there is one way it is also unique--it affects women solely, and particularly very young women (age 12-14) whose bodies have not developed enough to safely bear children. Maternal health is already a sorely underfunded area of research. Every day, even in 2012, 800 women die from causes related to pregnancy and childbirth, and 99% of those are in developing countries, particularly in rural areas. A midwife working in Ethiopia and quoted in "Half the Sky" lamented, "If this happened to men, we would have foundations and supplies coming in from all over the world." The inclusion of obstetric fistula into the umbrella of NTDs could open up new funding streams and awareness, and bring us one step closer to this goal.
*Mahabouba's story is told in "Half the Sky" by Nicholas Kristof and Sheryl WuDunn, pages 93-97, as well as in this New York Times article. Other women's stories can be found at this site.
Works cited and further reading
Wall, LL (2012). Obstetric Fistula Is a "Neglected Tropical Disease" PLoS Neglected Tropical Diseases, 6 (8) Link
White et al. (1987) Emergency obstetric surgery performed by nurses in Zaïre. Lancet.
Kristof and DuWunn (2009). Half the Sky: Turning Oppression into Opportunity for Women Worldwide. Knopf, New York.
"A Walk To Beautiful." The issue your confronting is one that I don't think most Americans are even aware exists. Good luck and it is great you are putting this information out...
for more information on obstetric fistula, please go to www.fistulacare.org. This is the website for the initiative to prevent and treat fistula, managed by EngenderHealth and supported by USAID, the government's development assistance arm. We are currently partnering with institutions in more than ten countries in Africa to increase acces to care.
If you are in NYC from Sept 12/12 there will be a photo show by a group of citizen journalists who traveled to Ethiopia tI learn about and raise awareness for the Hamlin fistula hospital in Addis Ababa. The show will be at FotoCare 43 west 22nd st from 6:30-8:30 pm.
Thanks for writing this, Tara.
What a paradox that this disease is SO emotionally, mentally and physically devastating and yet there is a relatively inexpensive and quick solution.
Women with untreated fistulas end up (normally) without children (devastating in an area where children=source of security), without friends or family (as they're seen as dirty or cursed, like Mahabouba), without dignity and without health.