A "Mark of Shame"

August 11, 2008

by Beryl Lieff Benderly


Berryl Lieff Benderly is a prize-winning Washington journalist and author specializing in health, behavior, and science policy. Her articles appear in major magazines and on the Internet, and she is a regular contributor to the Science magazine website. Her eight books include “In Her Own Right: The IOM Guide to Women’s Health Issues”.

For the great majority of women in the developed world, giving birth is the safe and joyful start to a life as the mother of a healthy child. For countless women in developing countries, however, going into labor is the painful beginning of a lifetime of unremitting shame and misery as a despised social outcast—destitute, childless, and abandoned by family and friends.  

    What makes the difference is whether a woman received adequate obstetrical care. Because so many in poor countries do not, they suffer completely avoidable injuries that render them physically disabled and socially repulsive. The afflicted victims are the ones who must bear the burden of rejection and disgrace, but, in reality, “this situation is a mark of shame on the world medical community,” according to obstetrician and public health expert L. Lewis Wall of the Medical School of Washington University (St. Louis).1

    These women have a condition called obstetric fistula. A fistula, the Latin word for “pipe,” is an “abnormal passage” between organs2 —in this case, between the vagina and the bladder, the rectum, or both. The hole makes the woman uncontrollably incontinent of urine or feces or both and transforms a healthy person into someone viewed as a leaking, reeking, “moving latrine,” in the words of Veronica Yakobe, a Malawian woman who endured 23 years of indignity before an operation at Nkhoma Hospital in her country’s central region closed the fistula and restored control of her bodily functions.3  Soon after the obstetric disaster that created her fistula, “I was forced to flee my home,” she recalls. “I couldn’t stand the taunting of my own relatives and neighbors.”4

A Routine Disaster

Despite the length of her ordeal and the fact that she tried three other hospitals before finding a physician able to perform the needed surgery, Yakobe is more fortunate than the estimated 2 million to 3.5 million women worldwide currently living with obstetric fistula. More than 100,000 more join them each year, the vast majority of whom have little chance of ever obtaining relief because the repair operations accomplished each year number only in the thousands.5  Given the condition’s great stigma, and the fact that it generally occurs in remote rural areas, experts believe that available statistics underestimate the true numbers. International assessments have found that the risk of fistula exists in African, Asian and Pacific countries, as well as isolated parts of Latin America.6  As many as a million women may live with fistula in northern Nigeria alone and more than 70,000 in Pakistan. About one delivery in every thousand in Kenya results in a fistula, according to reports.7   

    But if Yakobe’s outcome is more favorable than most, her years of destitution and social ostracism are distressingly typical. Statistics from Ethiopia, Nigeria, India, Pakistan, and elsewhere show that the majority of fistula sufferers are abandoned by their families, divorced by their husbands, and forced to fend for themselves, often by begging.8  Some, like a group of Somali women who leapt from a pier chained to one another, end their lives in despair.9  

    In developed countries, fistulas occasionally happen from surgical accidents or radiation therapy and are promptly repaired. Few in those countries have ever heard of the condition. But across much of the less developed world, fistula is an ordinary hazard of childbirth for many women and a permanent blight on countless lives. In those countries, obstetric fistula overwhelming results from obstructed labor, which occurs when the baby cannot pass through the mother’s birth canal because it either does not come head first or is too large for her pelvis. In the developed world, prompt medical intervention, often including Caesarean section, permits a delivery safe for both mother and child. But thousands of times each year in poor countries, birthing women receive no such aid and their labor is a futile agony lasting up to five days, with uterine contractions constantly forcing the baby, usually head first, against unyielding pelvic bone. 

    Long before the mother’s torment ends, however, the unremitting pressure kills the child.  It also cuts off the blood supply to the soft tissues of her vagina and other organs trapped between the baby’s skull and her pelvis. Eventually these tissues also die, forming one or more fistulas, and the baby’s head softens sufficiently for the stillborn child to pass from her body. Should she survive, the mother soon finds urine, feces or both leaking unstoppably from her vagina. In about a fifth of cases, the woman also suffers nerve injury that can cause a condition called footdrop, which prevents normal walking. Constant contact with urine or feces irritates and infects her skin and other tissues. Her kidneys, bladder, or other nearby organs may also be damaged.  Her menstrual periods may stop, rendering her infertile.

Early Marriages, Ruined Lives

As if the trauma of the labor, the death of her child, and the severity of her injuries were not enough, the woman generally suffers another lasting calamity, the loss of her role as wife and mother. She lives in a traditional culture that affords no other source of dignity and status to a poor, uneducated, illiterate, rural woman like herself, and she lacks an understanding of modern health care, any urban services, or even paved roads. She is generally very young and pregnant for the first time, having married a poor, uneducated village farmer or artisan in her teens or even earlier. Studies of patients undergoing fistula surgery find the majority in their early twenties or younger.10  In one Nigerian study, 72 percent were between the ages of 10 and 20, 82 percent having married between 10 and 15.11   

    Marriage and pregnancy in the early teens put women at particular risk for obstructed labor because the pelvis does not reach full development for several years after menstruation begins. Fistula can happen at any age and in any pregnancy, however, and often also strikes women who have had a number of safe deliveries because the size of a woman’s babies tends to rise with succeeding pregnancies. Beyond that, the “relatively narrow architecture” typical of African women’s pelvises also increases the risk of obstruction, Wall notes.12   Small size, often related to malnutrition, does the same.

The Basic Cause

But even as studies enumerate anatomical, matrimonial, and demographic factors that increase risk, experts emphasize that the basic reason for fistulas lies not in women’s bodies, social lives, or diet, but in the failure of health systems to provide the resources needed to ensure safe childbirth. Many studies lay “undue emphasis…on early marriage as the aetiology of the disease,” state Dr. Mohammed Kabir of Amimu Kano Teaching Hospital in Kano, Nigeria, and co-authors. “The lack of skilled supervision [of childbirth] and adequate emergency facilities are to blame.”13  Even if young girls continue to be subjected to too-early marriage and pregnancy, prompt and competent obstetric care could prevent obstructed labor from resulting in fistulas. 

    The same shortages that Kabir and colleagues cite also underlie high maternal death ratios in much of the developing world, where “the problem of obstetric fistula is linked directly to that of maternal mortality,” according to Wall and co-authors. And that problem, they continue, is “embedded in a complex network of social issues [including] the social status of women, the distribution and availability of health care resources, perceptions about the nature and importance of maternal health problems, and the social, economic and political infrastructures of developing countries.” It can rightly be said, they note, that fistula “results from the combination of ‘obstructed labor and obstructed transport.’”14

    “Three stages of delay” keep women from the help they need.15  First, embarrassment, tradition, cost, or misplaced optimism delays the realization that labor has gone awry. Then, distance, bad roads, or lack of a vehicle delay the journey to a clinic or hospital able to salvage the situation. Finally, crowding, understaffing, or lack of resources may delay the needed services when the woman finally arrives. A Caesarean section performed within the first 48 hours of labor will generally prevent fistula, although it may not save the baby.16

 
    The stark difference between the experience of mothers in the developing and developed worlds explains one of the greatest discrepancies known in health statistics, that between the rates of maternal mortality in rich and poor countries—a gap that constitutes “one of the most neglected issues of social injustice in the world today,” according to Wall and co-authors.17  Only 1 percent of the more than half a million maternal deaths each year happen in developed nations. In Northern Europe and North America, 11 women die for every 100,000 live births and a woman’s lifetime chance of dying because of pregnancy is 1 in 4,000. In Africa, that risk has been estimated at 1 in 14,18  and in some of the poorest parts of the continent, where over a thousand women die for every 100,000 live births, at 1 in 7.19

    These differences starkly reflect the relative availability in each type of country of birth attendants trained to discern when labor is headed for trouble and of facilities that provide the needed care. Countries with low maternal death and fistula rates not only have hospitals or clinics staffed by competent health professionals, but also the will and the means to get women there in time. The frenzied race to the hospital is a staple of comedy in the developed world because it indicates the priority given to prompt maternal care.

    The emphasis on skilled attendance at every birth has done a great deal more than produce laughs, however. It has helped slash the rich countries’ maternal death rates, which in the 19th century matched those seen in poor countries today.20  Obstetric fistula was also common in Western countries in those days—so common, in fact, that Dr. J. Marion Sims, the American surgeon who in the 1840’s developed the first fistula repair operation, established a hospital for fistula surgery in New York City in 1855. It stood on the site of today’s Waldorf-Astoria Hotel.

    The women of New York and the rest of the developed world no longer need fear obstructed labor and its disastrous consequences because, “with access to skilled maternal care, [it] can be predicted, identified and treated,” according to the World Health Organization.21  A birth attendant need not even have a high level of technical training to spot trouble early enough to prevent injury. Using a pencil-and-paper form called the partogram, an attendant with only limited training can record periodic observations that warn when the labor is not progressing properly and emergency help is needed. Even in areas like Northern Nigeria, where traditional attendants serve at least 75 percent of births, “the need for local governments to train more traditional birth attendants [in the] skills to enable early detection and referral of patients at risk of developing [fistula] cannot be over emphasized,” write Kabir and colleagues.22  Even without the partogram, the message that a woman’s labor should not last 24 hours needs to be universally understood.23

Human Rights and Wrongs

The needless consequences of obstructed labor, legal experts say, constitute a failure of both public health and human rights. “Vulnerability to obstetric fistula violates many of the human rights that collectively constitute the right to reproductive health,” write Rebecca J. Cook of the University of Toronto Faculty of Law and co-authors.24  The United Nations’ Convention on the Elimination of All Forms of Discrimination against Women obliges governments to provide needed maternal health care, regardless of geographic isolation or social situation. It and the Convention on the Rights of the Child both prohibit child marriage.

    Since 2003, an international campaign spearheaded by the United Nations Population Fund and other organizations have focused on reducing fistula in more than 30 nations around the world. A number of countries, such as Mozambique and Tanzania, are nearing the goal of having a hospital equipped to handle obstetric emergencies no more than 24 hours away from every woman and are consequently seeing a drop in fistulas. In some countries where fully qualified physicians are in short supply, mid-level health professionals have been trained to perform successful emergency obstetric surgeries.25  

(c) Ruth C. Kennedy, Courtesy of Photoshare     A number of facilities, most prominently the renowned Addis Ababa Fistula Hospital, in Ethiopia, repair thousands of fistulas each year at a cost of about $450 for each operation and related care.26  But still, the number of women suffering the disability and indignity continues to grow, creating a backlog that by some estimates would take centuries to clear, but which others believe could, with appropriate effort, be managed in a decade.  And given the limited funds available for maternal care overall, experts differ on how to balance resources between prevention and treatment. In the opinion of Dr. Yifru Berhan, an obstetrician in the Ethiopian town of Hawassa, for example, “it’s unfortunate that we have hospitals to manage the complication but not to prevent the complication.”27  

    But no one denies that both the plight of current sufferers and the danger facing the women giving birth without proper care urgently need massive attention. “The affluent countries...bear substantial responsibility for allowing this situation to continue when relatively low cost, low technology interventions…could prevent it,” write Wall and co-authors.28  Eliminating the threat and reality of fistula requires no advances in medical knowledge, technique or skill, but rather the determination to ensure poor women in poor countries the human rights and health care routinely available to their wealthier sisters. As Cook and co-authors conclude, “fistula often illustrates states’ comprehensive failures to recognize, value and protect not only women’s human rights, but also their health, their dignity and their very lives.”29

-------------------

1 Wall, L. “Obstetric Vesicovaginal Fistula as an International Public-health Problem.” The Lancet. 2006; 368: 1201-09.

2 Stedman’s Medical Dictionary, 25th Edition. 1990. Baltimore: Williams & Wilkins.

 

3 Quoted in Semu-Banda, P. “Obstetric Fistula: A Medical Nightmare for Malawian Women.” The WIP (The Women’s International Perspective); December 5, 2007. http://thewip.net/contributors/2007/12/obstetric_fistula_a_nightmare.html.

4 Ibid.

 

5 Muleta, M. “Obstetric Fistula in Developing Countries: A Review Article.” Journal of
Obstetrics and Gynaecology Canada. 2006; 28 (11): 962-66. Wall.

6 Cook, R., and B. Dickens. “Obstetric Fistula: The Challenge to Human Rights.”  International Journal of Gynecology and Obstetrics. 2004; 87: 72-77.

7 Muleta.

8 Kabir, M., et al. “Medico-Social Problems of Patients with Vesico-Vaginal Fistula in Murtula Mohammed Specialist Hospital, Kano.” Annals of African Medicine. 2002; 2(2): 54-57. World Health Organization, Obstetric Fistula: Guiding Principles for Clinical Management and Programme Development. 2006. Geneva: World Health Organization. Wall et al. “The Obstetrical Vesicovaginal Fistula in the Developing World,” in Abrams, P., L. Cardozo, S. Khoury, and A. Wein, eds.  Incontinence: 2nd International Consultation on Incontinence, July 1-3, 2002. 2nd ed., 2002. Paris: Health Publications. 

9 Wall et al.

10 Ibid.   

11 Kabir et al. 

12 Wall.

13 Kabir et al.

 

 

14 Wall et al.

 

15 Thaddeus, S., and D. Maine. “Too Far to Walk;” Maternal Mortality in Context.” Social Science and Medicine. 1994; 38: 1091-1110.

 

16 Colin McCord, personal communication.

 

17 Wall et al.

 

18 McCord.

 

19 Wall et al.

 

20 Ibid.

 

21 Obstetric Fistula.

 

22 Kabir et al.

 

23 McCord.

 

24 Cook et al.

 

25 McCord.

 

26 “Fistula Fast Facts and Frequently Asked Questions.” Fistula Foundation.  www.fistulafoundation.org/aboutfistula/faqs.html.

 

27 Quoted in Glauser, W. “Finding a Balance Between Treatment and Prevention of Obstetric Fistula.” CMAJ. 2008; 178(12).

 

28 Wall et al. 

 

29 Cook et al.


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