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Obstetric fistulas in Africa and the developing world: New efforts to solve an age-old problem
Obstetric Fistulas in Africa and the Developing World: New Efforts to Solve an Age-Old Problem L. Lewis Wall, MD, DPhil Associate Professor Department of Obstetrics and Gynecology Louisiana State University Medical Center New Orleans, Louisiana Adjunct Associate Professor Department of Tropical Medicine School of Public Health and Tropical Medicine Tulane University New Orleans, Louisiana
A
n obstetric fistula is a hole between the bladder and the vagina, or between the rectum and the vagina, that typically develops as a result of obstetrical trauma. This was a particularly pressing problem in the United States in the 19th century, because access to skilled midwifery care was often limited and labors were often prolonged. The suffering of women who developed obstetric fistulas was intense, and their cases were regarded as hopeless because there was no effective therapy for this condition. This situation changed in 1849, when a consistently successful surgical operation for this problem was developed by Dr. J. Marion Sims. With Sims, the modern era of gynecologic surgery began.’ Although we now take his achievement for granted, in the 19th century Sims was feted, lionized, and celebrated by women throughout the Western world. The rise of obstetrics as a specialty, together with the gradual provision of trained midwifery and delivery services for the entire population, has made the obstetric fistula almost unknown in the United States and the rest of the industrialized world today. Most gynecologic practitioners will go through their entire careers without seeing an obstetric fistula; and many gynecologists will never even see a vesico-vaginal fistula due to surgery, malignancy, or radiation therapy, the most common causes of fistula formation in the Western world today.’ Although we are rightly proud of our achievements in the field of maternal health, the rest of the world is not so lucky. Obstetric fistulas tragically are still commonplace, particularly in Africa. Throughout much of the African continent marriage often takes place by tradition at an early age, well before the pelvic structures have grown to full adult size. Parasitic diseases are rampant, maternal nutrition is poor, and severe anemia is commonplace. When birth-related injuries do occur, these factors predispose women to heal poorly,
0 1996 by The Jacobs Institute
OfWomen’sHea1th Published by Elsevier Science 1049.3867,96,s15~00
Inc.
PII sm9-3867(96!oooo4-7
WALL:
FKTULAS
IN AFRICA
229
r irrespective of the severity of the internal injury they have suffered. In parts of Africa, such as Somalia and the Sudan, additional risk factors for fistula formation exist in the form of traditional practices that involve the mutilation of the external (and sometimes the internal) female genitalia.3 In northern Nigeria, the traditional treatment of many gynecologic and obstetric complaints cutting inside the vagina, which often leads to fistula involves “therapeutic” services and lack of the formation by itself.4,5 Lack of adequate midwifery capability to perform basic obstetric procedures in a timely fashion remain the biggest factors contributing to obstetric fistula formation in Africa today, just as they were in the United States 150 years ago when Sims set out to find a surgical cure for the obstetric vesico-vaginal fistula. This situation is reflected in the maternal mortality statistics for Africa, which remain the highest in the world.6 The overall maternal mortality rate for Africa is calculated by the World Health Organization to be 640 per 100,000 live births.7 Whereas the lifetime risk of a woman dying in childbirth in Scandinavia is estimated to be 1 in 25,000, by contrast, the estimated lifetime risk of maternal death in rural Africa is approximately 1 in 15.7 Although the World Health Organization has defined the essential obstetrical services that should be provided for all women at the first referral leve1,sf9 most African women have no access to such care. In one study from Gambia women had to travel 20 km to reach a basic antenatal clinic, and patients with complications were forced to undertake a 200 km trip to Banjul, which involved crossing the River Gambia by ferry, if they were to obtain emergency obstetrical services.” Under such conditions, is it any wonder that so many mothers die in childbirth or that those who survive childbirth injury suffer such terrible damage to their pelvic organs? Indeed, it has been said that maternal mortality and morbidity in Africa is due largely to obstructed labor and obstructed transport-women in labor cannot get the care they need if their labors stop progressing normally. This situation is made worse by poverty, the low social status that women occupy in most of these countries, and the maldistribution of medical resources. Doctors flow either to the capital cities where private practice is possible, or they flow to the Western world. It is reported widely that there are more Ethiopian doctors in New York City than there are in all of Ethiopia. In such a situation, is it any wonder that the maternal mortality in the capital city of Addis Ababa is 566 per 100,000 live births. ?I1 In underserved rural areas, the situation is even worse. The vast majority of maternal deaths are preventable, but the women who die are unrecoverable. Among survivors, obstetric fistulas represent the single greatest problem of maternal morbidity in Africa. Normal labor pushes the fetal head down into the pelvis, through the cervix, and out the vagina into the waiting world. When labor is obstructed, the fetal head is rammed into the pelvis and impacts against the soft tissues of the pelvic floor, pinning the bladder base and urethra against the pubic bone. This condition may last for several days if competent obstetrical care is not available. At the end of this ordeal, exhausted from labor, frequently weak from hemorrhage, often febrile from impending sepsis, the mother finally delivers a stillborn fetus. If she manages to survive (and many do not), her injured tissues slough away several days later, creating a massive hole from the vagina into the bladder, and frequently into the rectum as well. To have survived a labor this horrific is in itself a cause for pity, but to continue living thereafter, unclean, outcast, smelling of urine and feces, is almost unendurable. The fistula problem in Africa is widespread, and widely neglected. In northern Nigeria, for example, estimates place the number of unrepaired vesico-vaginal fistulas at more than 150,000.‘2 Arrowsmith recently reported his experience with a series of 93 fistula patients from Jos, northern Nigeria. The statistics speak for themselves:12 230
WOMEN’S
HEALTH
ISSUES VOL. 6, NO. 4 JULY/AUGUST
1996
l
l l l
l
l l l l
l
The mean patient age at the time the fistula developed was 22 years (range 1244 years). The mean duration of labor in these patients was 60.5 hours (range 12-336 hours). Ninety-six percent of the infants involved died. The average duration of the fistula before presentation for care was 7.1 years, and one patient presented after 38 years of suffering. Eighty-two percent of the fistulas were simple vesico-vaginal fistulas, but 18% were more complex, including utero-vaginal fistulas, urethro-vaginal fistulas, and multiple vesico-vaginal fistulas. Ten percent of the patients had a recta-vaginal as well as a vesico-vaginal fistula. The length of the fistula averaged 2 cm (range, 0.1-8.0 cm). The width of the fistula averaged 1.6 cm (range, 0.1 to 6.0 cm). Thirty-two percent of patients suffered from complete destruction of the urethra or direct injury to the bladder neck. Due to the widespread vascular injury sustained in childbirth, 79% of these women had significant vaginal scarring in addition to their fistulas. Such findings
are shocking,
statistics from Ahmadu
Tahzib reported the following of Zaria, northern Nigeria:i3
but not unique.
Belle University
Fifty-two percent of the patients with vesico-vaginal fistulas were primiparous. Less than 1% of the patients had received any formal education. . Eighty-four percent of the fistulas were due to obstructed labor. l Thirteen percent of the fistulas were due to traditional vaginal cutting procedures (giskiri). l Six percent of the patients with fistulas were 13 years of age or younger, and 55% of the patients were under the age of 20.
l l
Another study of 947 patients with obstetric fistulas in Katsina, northern Nigeria, found that 65% of the women had a history or current signs of peroneal nerve injury at the time of admission for fistula repair.i4 Harrison reported a vesico-vaginal fistula rate of 3.5 fistulas per 1,000 births in a meticulous review of 22,774 hospital deliveries from this region,i5 and although only 79 fistulas occurred in this population during the 3i/2 years of the study, outpatient gynecology clinics at the same institution routinely saw more than 300 new vesico-vaginal fistulas each year, more than the total number of maternal deaths recorded during the entire study period. In underserved parts of Africa with high maternal mortality rates, it seems likely that the fistula rate approaches the maternal mortality rate of 5-10 deaths per 1,000 births. Because women with fistulas usually do not die, the burden of suffering continues to grow every year, while little progress is made towards eliminating the root cause of the problem. Although these statistics come from only one country, they are consistent with what is known about the obstetric fistula problem throughout much of the rest of the African continent. Dr. Catherine Hamlin, along with her late husband Dr. Reginald Hamlin, have now repaired nearly 17,000 obstetric fistulas at their hospital in Addis Ababa, Ethiopia. I2 When one considers that Goodwin and Scardino were able to amass a total of only 68 patients with genitourinary fistulas in 25 years of work at the UCLA School of Medicine in the United States and that only four of these cases were related to obstetric complications, the magnitude of the problem becomes apparent.2 The statistics reviewed here are horrifying; however, they do not tell the whole story. These physical injuries also represent a terrible social problem. For these women the proudest moments of their young lives-the birth of their first children and full transition to African womanhood-has turned to ashes instead. In northern Nigeria more than 80% of these women become separated from their husbands. Some manage to live with their fathers or other relatives, but many are simply cast out by their families to fend for themselves.i6 Young, poverty-stricken, illiterate, unskilled, physically damaged, and stinking of
WALL:
FISTULAS
IN AFRICA
231
urine, these women are “the wretched of the earth.” They have no resources, no social support, and virtually no prospects for the future; yet nearly threequarters of these women are not yet 20 years old. They are the most dispossessed, outcast, powerless group of women in the world. This represents a social tragedy of staggering proportions, for the waste of otherwise productive lives is tremendous. At least 2 million such women exist worldwide, possibly more, but as yet there has been no coordinated international response to this tragic problem.17 Although the need has long been recognized,‘* until now there has been no international organization dedicated solely to this cause and to the advocacy of the needs of these patients. The obstetric fistula problem is a major women’s health issue that has been largely ignored by the world community. It is time for this situation to change.
THE WORLDWIDE
FUND FOR MOTHERS IN CHILDBIRTH
INJURED
Although most obstetric fistulas can be repaired using excellent and relatively simple surgical techniques, the vast majority of African women with this problem have no access to surgical care. Our understanding of the social implications of these patients’ dilemma is also limited. In response to these problems, The Worldwide Fund for Mothers Injured in Childbirth was established in 1995 as a not-for-profit corporation registered in the state of Illinois. The Fund has been granted tax-exempt status as a public charity under section 501(c)(3) of the Internal Revenue Code and all contributions are tax-deductible to the full extent permitted by law. The goals of the Fund are as follows: 1. To support the repair of obstetric fistulas at multiple surgical centers throughout Africa. 2. To improve access to curative surgical services for patients who have developed vesico-vaginal fistulas and to ensure that knowledge of fistula repair becomes part of the routine training of African obstetrician-gynecologists, urologists, and general surgeons. 3. To improve the surgical techniques used in dealing with routine fistula cases and to develop new techniques for treating patients with complicated fistulas and their sequelae. 4. To understand the social background of patients who develop vesico-vaginal fistulas and the cultural practices that permit the development of this condition. 5. To develop educational programs for vesico-vaginal fistula patients who are waiting for surgical repair and for those recovering postoperatively that will accomplish the following: Teach them to read or improve their literacy. Teach them skills that will allow them to earn a livelihood once they have been rehabilitated. . Facilitate their reintegration back into their society. 6. To develop education programs to improve traditional midwifery practices and change the beliefs that have promoted the development of vesico-vaginal fistulas in the past. This will be part of a grass roots movement to aid the empowerment of African women regarding childbirth, a process without which the long-term goals of this program will be difficult to meet. l
l
The Worldwide Fund for Mothers Injured in Childbirth will develop model programs in fistula repair and the rehabilitation of fistula patients that can be implemented in other settings throughout Africa and the developing world. The Fund will work collaboratively with other interested medical, charitable, and governmental organizations to help bring about these goals. The Fund will help develop a network of African hospitals that already see large numbers of patients with obstetric fistulas. The Fund will foster the
232
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1996
development of centers of excellence for the treatment of obstetric fistulas in a number of African countries by using and improving the resources at these existing centers. From this base, the Fund will help expand educational programs and programs of surgical care from these sites. To date, sites for potential collaborative work have been located in Ghana, Nigeria, Benin, Niger, Malawi, Uganda, Zaire, the Sudan, and Ethiopia. The Worldwide Fund for Mothers Injured in Childbirth is committed to the philosophy that the solution to the problem of obstetric fistulas can only be solved through a shared international commitment. Over time, the Fund will implement a partnership process through which specific vesico-vaginal fistula centers can be linked with teams of surgeons from overseas who can be instrumental in raising global awareness of the problem and in establishing useful professional links with the international medical community. Each participating surgeon would make a long-term commitment to work with the indigenous medical staff at a specific location and for a specific period, returning on a regular basis. A similar approach has been used with great success in Ghana to develop programs of post-graduate medical training in obstetrics and gynecol0gy.i’ Specific surgical research projects will be developed to improve both the instruments used in surgery and the technical procedures used to close fistulas. A special emphasis will be placed on improving the treatment of complex fistulas, ie, fistulas involving the rectum as well as the bladder, and those involving complete destruction of the urethra. Identification and treatment of complications persisting after fistula repair, including stress urinary incontinence due to urethral damage, reduced bladder capacity, anal incontinence, dyspareunia, sexual dysfunction, amenorrhea, subfertility, and neurological problems in the lower extremities such as “foot drop,” will be a major priority for research. Patients with obstetric fistulas require special care. Unlike women who have undergone routine general surgical operations and who can often be discharged in four or five days, most fistula patients require at least two weeks of in-hospital care combined with several weeks of preoperative and postoperative nutritional support if they are to obtain the best healing of their surgical sites. Because of the offensive and socially stigmatizing nature of their problem, it is difficult to integrate these women into general surgical wards in an African hospital. In addition, they require specialized nursing care of a kind which is usually not available on a general ward. Fistula patients recover from surgery better and are much happier if they are taken care of in specialized wards or in specialized fistula hospitals. For all of these reasons, the Worldwide Fund for Mothers Injured in Childbirth will devote a significant amount of its resources to fostering the creation of specialized facilities for the treatment of these women. Most patients with an obstetric fistula are destitute. The problem is most prevalent in poverty-stricken rural areas. When cast out by their families, these women have no money to contribute toward the cost of their care. In nearly every African country, women’s health care is not a top priority. On top of this, the economic resources devoted to health care by all African governments are woefully inadequate to meet the medical needs of their citizens. For this reason, the Worldwide Fund also anticipates spending significant portions of its resources to subsidize the costs of surgical repair of fistulas for these patients. These costs are trivial when compared to the expense of similar surgery in Europe or the United States. In an African setting it rarely costs $200 to repair a fistula and support the patient financially for several weeks; but for the destitute African patient, these costs are prohibitive. A commitment of this kind of resources is justified by the young ages of these women, their otherwise generally good health, and the fact that they have many years of potentially
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productive life ahead of them after they are rehabilitated. Fistula repair surgery transforms the lives of these innocent individuals and returns them to remote African villages as living (and inspired) examples of the benefits that modern medical care can bring. There is no better investment than this. The Worldwide Fund for Mothers Injured in Childbirth is beginning a major fund-raising campaign to carry out this work. Our goal is to raise an endowment of $10 million to ensure that the work of the Fund will continue indefinitely, since the problem of obstetric fistulas in the developing world will continue well into the 21st century. Anyone interested in contributing to the work of the Fund should write to The Worldwide Fund for Mothers Injured in Childbirth, 7200 Sears Tower, Chicago, IL 60606.
REFERENCES 1. Harris S. Women’s surgeon: the life story of J. Marion Sims. New York: Macmillan, 1950. 2. Goodwin WE, Scardino PT. Vesicovaginal and ureterovaginal fistulas: a summary of 25 years of experience. J Ural 1980;123:370-4. 3. Toubia N. Female circumcision as a public health issue. N Engl J Med 1994;331: 712-6. 4. Wall LL. Hausa medicine: illness and well-being in a West African culture. Durham (NC): Duke Univ. Press, 1988. 5. Tahzib F. Vesicovaginal fistula in Nigerian children. Lancet 1985;2:1291-3. 6. Maternal health in sub-Saharan Africa [editorial]. Lancet 1987;1:255-7. 7. Abou-Zahr C, Royston E. Maternal mortality: a global factbook. Geneva: World Health Organization, 1991. 8. World Health Organization. Essentials of obstetric care at first referral level. Geneva: WHO, 1989. 9. World Health Organization. Maternal mortality: helping women off the road to death. WHO Chronical 1986;40:175-83. 10. Greenwood AM, Greenwood BM, Bradley AK, et al. A prospective survey of the outcome of pregnancy in a rural area of the Gambia. Bull World Health Organ 1987;65:635-43. 11. Kwast BE, Rochat RW, Kidane-Mariam W. Maternal mortality in Addis Ababa, Ethiopia. Stud Fam Plann 1986;17:288-301. 12. Arrowsmith SD. Genitourinary reconstruction in obstetric fistulas. J Ural 1994;152:
403-6. 13. Tahzib F. Epidemiological determinants of vesicovaginal fistulas. Br J Obstet Gynaecol 1983;90:387-91. 14. Waaldijk K, Elkins TE. The obstetric fistula and peroneal nerve injury: an analysis of 947 consecutive patients. lnt Urogynecol J 1994;5:124. 15. Harrison K.4. Child-bearing, health and social priorities: a survey of 22,774 conNigeria. Br J Obstet Gynaecol secutive hospital births in Zaria, northern 1985;92(Suppl. 5):1-119. 16. Murphy M. Social consequences of vesico-vaginal fistula in northern Nigeria. J Biosoc Sci 1981;13:139-50. 17. Harrison KA. Obstetric fistula: one social calamity too many. Br J Obstet Gynaecol 1983;90:385-6. 18. Waaldijk K, Armiya’u YD. The obstetric fistula: a major health problem still unsolved. Int Urogynecol J 1993;4:126-8. 19. Martey JO, Elkins TE, Wilson JB, Adadevoh SWK, MacVicar J, Sciarra JJ. Innovative community-based postgraduate training for obstetrics and gynecology in West Africa. Obstet Gynecol 1995;85:1042-6.
234
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HEALTH
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1996
A
n obstetric fistula is a hole between the bladder and the vagina, or between the rectum and the vagina, that typically develops as a result of obstetrical trauma. This was a particularly pressing problem in the United States in the 19th century, because access to skilled midwifery care was often limited and labors were often prolonged. The suffering of women who developed obstetric fistulas was intense, and their cases were regarded as hopeless because there was no effective therapy for this condition. This situation changed in 1849, when a consistently successful surgical operation for this problem was developed by Dr. J. Marion Sims. With Sims, the modern era of gynecologic surgery began.’ Although we now take his achievement for granted, in the 19th century Sims was feted, lionized, and celebrated by women throughout the Western world. The rise of obstetrics as a specialty, together with the gradual provision of trained midwifery and delivery services for the entire population, has made the obstetric fistula almost unknown in the United States and the rest of the industrialized world today. Most gynecologic practitioners will go through their entire careers without seeing an obstetric fistula; and many gynecologists will never even see a vesico-vaginal fistula due to surgery, malignancy, or radiation therapy, the most common causes of fistula formation in the Western world today.’ Although we are rightly proud of our achievements in the field of maternal health, the rest of the world is not so lucky. Obstetric fistulas tragically are still commonplace, particularly in Africa. Throughout much of the African continent marriage often takes place by tradition at an early age, well before the pelvic structures have grown to full adult size. Parasitic diseases are rampant, maternal nutrition is poor, and severe anemia is commonplace. When birth-related injuries do occur, these factors predispose women to heal poorly,
0 1996 by The Jacobs Institute
OfWomen’sHea1th Published by Elsevier Science 1049.3867,96,s15~00
Inc.
PII sm9-3867(96!oooo4-7
WALL:
FKTULAS
IN AFRICA
229
r irrespective of the severity of the internal injury they have suffered. In parts of Africa, such as Somalia and the Sudan, additional risk factors for fistula formation exist in the form of traditional practices that involve the mutilation of the external (and sometimes the internal) female genitalia.3 In northern Nigeria, the traditional treatment of many gynecologic and obstetric complaints cutting inside the vagina, which often leads to fistula involves “therapeutic” services and lack of the formation by itself.4,5 Lack of adequate midwifery capability to perform basic obstetric procedures in a timely fashion remain the biggest factors contributing to obstetric fistula formation in Africa today, just as they were in the United States 150 years ago when Sims set out to find a surgical cure for the obstetric vesico-vaginal fistula. This situation is reflected in the maternal mortality statistics for Africa, which remain the highest in the world.6 The overall maternal mortality rate for Africa is calculated by the World Health Organization to be 640 per 100,000 live births.7 Whereas the lifetime risk of a woman dying in childbirth in Scandinavia is estimated to be 1 in 25,000, by contrast, the estimated lifetime risk of maternal death in rural Africa is approximately 1 in 15.7 Although the World Health Organization has defined the essential obstetrical services that should be provided for all women at the first referral leve1,sf9 most African women have no access to such care. In one study from Gambia women had to travel 20 km to reach a basic antenatal clinic, and patients with complications were forced to undertake a 200 km trip to Banjul, which involved crossing the River Gambia by ferry, if they were to obtain emergency obstetrical services.” Under such conditions, is it any wonder that so many mothers die in childbirth or that those who survive childbirth injury suffer such terrible damage to their pelvic organs? Indeed, it has been said that maternal mortality and morbidity in Africa is due largely to obstructed labor and obstructed transport-women in labor cannot get the care they need if their labors stop progressing normally. This situation is made worse by poverty, the low social status that women occupy in most of these countries, and the maldistribution of medical resources. Doctors flow either to the capital cities where private practice is possible, or they flow to the Western world. It is reported widely that there are more Ethiopian doctors in New York City than there are in all of Ethiopia. In such a situation, is it any wonder that the maternal mortality in the capital city of Addis Ababa is 566 per 100,000 live births. ?I1 In underserved rural areas, the situation is even worse. The vast majority of maternal deaths are preventable, but the women who die are unrecoverable. Among survivors, obstetric fistulas represent the single greatest problem of maternal morbidity in Africa. Normal labor pushes the fetal head down into the pelvis, through the cervix, and out the vagina into the waiting world. When labor is obstructed, the fetal head is rammed into the pelvis and impacts against the soft tissues of the pelvic floor, pinning the bladder base and urethra against the pubic bone. This condition may last for several days if competent obstetrical care is not available. At the end of this ordeal, exhausted from labor, frequently weak from hemorrhage, often febrile from impending sepsis, the mother finally delivers a stillborn fetus. If she manages to survive (and many do not), her injured tissues slough away several days later, creating a massive hole from the vagina into the bladder, and frequently into the rectum as well. To have survived a labor this horrific is in itself a cause for pity, but to continue living thereafter, unclean, outcast, smelling of urine and feces, is almost unendurable. The fistula problem in Africa is widespread, and widely neglected. In northern Nigeria, for example, estimates place the number of unrepaired vesico-vaginal fistulas at more than 150,000.‘2 Arrowsmith recently reported his experience with a series of 93 fistula patients from Jos, northern Nigeria. The statistics speak for themselves:12 230
WOMEN’S
HEALTH
ISSUES VOL. 6, NO. 4 JULY/AUGUST
1996
l
l l l
l
l l l l
l
The mean patient age at the time the fistula developed was 22 years (range 1244 years). The mean duration of labor in these patients was 60.5 hours (range 12-336 hours). Ninety-six percent of the infants involved died. The average duration of the fistula before presentation for care was 7.1 years, and one patient presented after 38 years of suffering. Eighty-two percent of the fistulas were simple vesico-vaginal fistulas, but 18% were more complex, including utero-vaginal fistulas, urethro-vaginal fistulas, and multiple vesico-vaginal fistulas. Ten percent of the patients had a recta-vaginal as well as a vesico-vaginal fistula. The length of the fistula averaged 2 cm (range, 0.1-8.0 cm). The width of the fistula averaged 1.6 cm (range, 0.1 to 6.0 cm). Thirty-two percent of patients suffered from complete destruction of the urethra or direct injury to the bladder neck. Due to the widespread vascular injury sustained in childbirth, 79% of these women had significant vaginal scarring in addition to their fistulas. Such findings
are shocking,
statistics from Ahmadu
Tahzib reported the following of Zaria, northern Nigeria:i3
but not unique.
Belle University
Fifty-two percent of the patients with vesico-vaginal fistulas were primiparous. Less than 1% of the patients had received any formal education. . Eighty-four percent of the fistulas were due to obstructed labor. l Thirteen percent of the fistulas were due to traditional vaginal cutting procedures (giskiri). l Six percent of the patients with fistulas were 13 years of age or younger, and 55% of the patients were under the age of 20.
l l
Another study of 947 patients with obstetric fistulas in Katsina, northern Nigeria, found that 65% of the women had a history or current signs of peroneal nerve injury at the time of admission for fistula repair.i4 Harrison reported a vesico-vaginal fistula rate of 3.5 fistulas per 1,000 births in a meticulous review of 22,774 hospital deliveries from this region,i5 and although only 79 fistulas occurred in this population during the 3i/2 years of the study, outpatient gynecology clinics at the same institution routinely saw more than 300 new vesico-vaginal fistulas each year, more than the total number of maternal deaths recorded during the entire study period. In underserved parts of Africa with high maternal mortality rates, it seems likely that the fistula rate approaches the maternal mortality rate of 5-10 deaths per 1,000 births. Because women with fistulas usually do not die, the burden of suffering continues to grow every year, while little progress is made towards eliminating the root cause of the problem. Although these statistics come from only one country, they are consistent with what is known about the obstetric fistula problem throughout much of the rest of the African continent. Dr. Catherine Hamlin, along with her late husband Dr. Reginald Hamlin, have now repaired nearly 17,000 obstetric fistulas at their hospital in Addis Ababa, Ethiopia. I2 When one considers that Goodwin and Scardino were able to amass a total of only 68 patients with genitourinary fistulas in 25 years of work at the UCLA School of Medicine in the United States and that only four of these cases were related to obstetric complications, the magnitude of the problem becomes apparent.2 The statistics reviewed here are horrifying; however, they do not tell the whole story. These physical injuries also represent a terrible social problem. For these women the proudest moments of their young lives-the birth of their first children and full transition to African womanhood-has turned to ashes instead. In northern Nigeria more than 80% of these women become separated from their husbands. Some manage to live with their fathers or other relatives, but many are simply cast out by their families to fend for themselves.i6 Young, poverty-stricken, illiterate, unskilled, physically damaged, and stinking of
WALL:
FISTULAS
IN AFRICA
231
urine, these women are “the wretched of the earth.” They have no resources, no social support, and virtually no prospects for the future; yet nearly threequarters of these women are not yet 20 years old. They are the most dispossessed, outcast, powerless group of women in the world. This represents a social tragedy of staggering proportions, for the waste of otherwise productive lives is tremendous. At least 2 million such women exist worldwide, possibly more, but as yet there has been no coordinated international response to this tragic problem.17 Although the need has long been recognized,‘* until now there has been no international organization dedicated solely to this cause and to the advocacy of the needs of these patients. The obstetric fistula problem is a major women’s health issue that has been largely ignored by the world community. It is time for this situation to change.
THE WORLDWIDE
FUND FOR MOTHERS IN CHILDBIRTH
INJURED
Although most obstetric fistulas can be repaired using excellent and relatively simple surgical techniques, the vast majority of African women with this problem have no access to surgical care. Our understanding of the social implications of these patients’ dilemma is also limited. In response to these problems, The Worldwide Fund for Mothers Injured in Childbirth was established in 1995 as a not-for-profit corporation registered in the state of Illinois. The Fund has been granted tax-exempt status as a public charity under section 501(c)(3) of the Internal Revenue Code and all contributions are tax-deductible to the full extent permitted by law. The goals of the Fund are as follows: 1. To support the repair of obstetric fistulas at multiple surgical centers throughout Africa. 2. To improve access to curative surgical services for patients who have developed vesico-vaginal fistulas and to ensure that knowledge of fistula repair becomes part of the routine training of African obstetrician-gynecologists, urologists, and general surgeons. 3. To improve the surgical techniques used in dealing with routine fistula cases and to develop new techniques for treating patients with complicated fistulas and their sequelae. 4. To understand the social background of patients who develop vesico-vaginal fistulas and the cultural practices that permit the development of this condition. 5. To develop educational programs for vesico-vaginal fistula patients who are waiting for surgical repair and for those recovering postoperatively that will accomplish the following: Teach them to read or improve their literacy. Teach them skills that will allow them to earn a livelihood once they have been rehabilitated. . Facilitate their reintegration back into their society. 6. To develop education programs to improve traditional midwifery practices and change the beliefs that have promoted the development of vesico-vaginal fistulas in the past. This will be part of a grass roots movement to aid the empowerment of African women regarding childbirth, a process without which the long-term goals of this program will be difficult to meet. l
l
The Worldwide Fund for Mothers Injured in Childbirth will develop model programs in fistula repair and the rehabilitation of fistula patients that can be implemented in other settings throughout Africa and the developing world. The Fund will work collaboratively with other interested medical, charitable, and governmental organizations to help bring about these goals. The Fund will help develop a network of African hospitals that already see large numbers of patients with obstetric fistulas. The Fund will foster the
232
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HEALTH
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development of centers of excellence for the treatment of obstetric fistulas in a number of African countries by using and improving the resources at these existing centers. From this base, the Fund will help expand educational programs and programs of surgical care from these sites. To date, sites for potential collaborative work have been located in Ghana, Nigeria, Benin, Niger, Malawi, Uganda, Zaire, the Sudan, and Ethiopia. The Worldwide Fund for Mothers Injured in Childbirth is committed to the philosophy that the solution to the problem of obstetric fistulas can only be solved through a shared international commitment. Over time, the Fund will implement a partnership process through which specific vesico-vaginal fistula centers can be linked with teams of surgeons from overseas who can be instrumental in raising global awareness of the problem and in establishing useful professional links with the international medical community. Each participating surgeon would make a long-term commitment to work with the indigenous medical staff at a specific location and for a specific period, returning on a regular basis. A similar approach has been used with great success in Ghana to develop programs of post-graduate medical training in obstetrics and gynecol0gy.i’ Specific surgical research projects will be developed to improve both the instruments used in surgery and the technical procedures used to close fistulas. A special emphasis will be placed on improving the treatment of complex fistulas, ie, fistulas involving the rectum as well as the bladder, and those involving complete destruction of the urethra. Identification and treatment of complications persisting after fistula repair, including stress urinary incontinence due to urethral damage, reduced bladder capacity, anal incontinence, dyspareunia, sexual dysfunction, amenorrhea, subfertility, and neurological problems in the lower extremities such as “foot drop,” will be a major priority for research. Patients with obstetric fistulas require special care. Unlike women who have undergone routine general surgical operations and who can often be discharged in four or five days, most fistula patients require at least two weeks of in-hospital care combined with several weeks of preoperative and postoperative nutritional support if they are to obtain the best healing of their surgical sites. Because of the offensive and socially stigmatizing nature of their problem, it is difficult to integrate these women into general surgical wards in an African hospital. In addition, they require specialized nursing care of a kind which is usually not available on a general ward. Fistula patients recover from surgery better and are much happier if they are taken care of in specialized wards or in specialized fistula hospitals. For all of these reasons, the Worldwide Fund for Mothers Injured in Childbirth will devote a significant amount of its resources to fostering the creation of specialized facilities for the treatment of these women. Most patients with an obstetric fistula are destitute. The problem is most prevalent in poverty-stricken rural areas. When cast out by their families, these women have no money to contribute toward the cost of their care. In nearly every African country, women’s health care is not a top priority. On top of this, the economic resources devoted to health care by all African governments are woefully inadequate to meet the medical needs of their citizens. For this reason, the Worldwide Fund also anticipates spending significant portions of its resources to subsidize the costs of surgical repair of fistulas for these patients. These costs are trivial when compared to the expense of similar surgery in Europe or the United States. In an African setting it rarely costs $200 to repair a fistula and support the patient financially for several weeks; but for the destitute African patient, these costs are prohibitive. A commitment of this kind of resources is justified by the young ages of these women, their otherwise generally good health, and the fact that they have many years of potentially
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productive life ahead of them after they are rehabilitated. Fistula repair surgery transforms the lives of these innocent individuals and returns them to remote African villages as living (and inspired) examples of the benefits that modern medical care can bring. There is no better investment than this. The Worldwide Fund for Mothers Injured in Childbirth is beginning a major fund-raising campaign to carry out this work. Our goal is to raise an endowment of $10 million to ensure that the work of the Fund will continue indefinitely, since the problem of obstetric fistulas in the developing world will continue well into the 21st century. Anyone interested in contributing to the work of the Fund should write to The Worldwide Fund for Mothers Injured in Childbirth, 7200 Sears Tower, Chicago, IL 60606.
REFERENCES 1. Harris S. Women’s surgeon: the life story of J. Marion Sims. New York: Macmillan, 1950. 2. Goodwin WE, Scardino PT. Vesicovaginal and ureterovaginal fistulas: a summary of 25 years of experience. J Ural 1980;123:370-4. 3. Toubia N. Female circumcision as a public health issue. N Engl J Med 1994;331: 712-6. 4. Wall LL. Hausa medicine: illness and well-being in a West African culture. Durham (NC): Duke Univ. Press, 1988. 5. Tahzib F. Vesicovaginal fistula in Nigerian children. Lancet 1985;2:1291-3. 6. Maternal health in sub-Saharan Africa [editorial]. Lancet 1987;1:255-7. 7. Abou-Zahr C, Royston E. Maternal mortality: a global factbook. Geneva: World Health Organization, 1991. 8. World Health Organization. Essentials of obstetric care at first referral level. Geneva: WHO, 1989. 9. World Health Organization. Maternal mortality: helping women off the road to death. WHO Chronical 1986;40:175-83. 10. Greenwood AM, Greenwood BM, Bradley AK, et al. A prospective survey of the outcome of pregnancy in a rural area of the Gambia. Bull World Health Organ 1987;65:635-43. 11. Kwast BE, Rochat RW, Kidane-Mariam W. Maternal mortality in Addis Ababa, Ethiopia. Stud Fam Plann 1986;17:288-301. 12. Arrowsmith SD. Genitourinary reconstruction in obstetric fistulas. J Ural 1994;152:
403-6. 13. Tahzib F. Epidemiological determinants of vesicovaginal fistulas. Br J Obstet Gynaecol 1983;90:387-91. 14. Waaldijk K, Elkins TE. The obstetric fistula and peroneal nerve injury: an analysis of 947 consecutive patients. lnt Urogynecol J 1994;5:124. 15. Harrison K.4. Child-bearing, health and social priorities: a survey of 22,774 conNigeria. Br J Obstet Gynaecol secutive hospital births in Zaria, northern 1985;92(Suppl. 5):1-119. 16. Murphy M. Social consequences of vesico-vaginal fistula in northern Nigeria. J Biosoc Sci 1981;13:139-50. 17. Harrison KA. Obstetric fistula: one social calamity too many. Br J Obstet Gynaecol 1983;90:385-6. 18. Waaldijk K, Armiya’u YD. The obstetric fistula: a major health problem still unsolved. Int Urogynecol J 1993;4:126-8. 19. Martey JO, Elkins TE, Wilson JB, Adadevoh SWK, MacVicar J, Sciarra JJ. Innovative community-based postgraduate training for obstetrics and gynecology in West Africa. Obstet Gynecol 1995;85:1042-6.
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