The Obstetric Fistula in the Developing World
WHEC Practice Bulletin and Clinical Management Guidelines for healthcare providers. Educational grant provided by Women's Health and Education Center (WHEC)
An estimated half a million girls and women die every year from preventable conditions related to pregnancy and childbirth. Virtually all such deaths occur in developing countries. Worldwide obstructed labor occurs in an estimated 5% of live births and accounts for 8% of maternal deaths. Obstetric fistula are predominately caused by a very long, or obstructed, labor which can last several days or even sometimes, over a week before the women receives obstetric care or dies. Globally, over 300 million women currently suffer from short- or long-term complications arising from pregnancy or childbirth, with around 20 million new cases arising every year. Fear of unknown breeds hostility towards these patients in the community at large. They are psychologically and spiritually vulnerable, and they are socially offensive due to the odor that surrounds them. The aim of Women's Health and Education Center (WHEC) is to improve education for managing childbirth and prevent obstetric fistula. Currently there is a worldwide effort to reduce maternal mortality in line with the Millennium Development Goals (MDGs) to reduce maternal mortality by 75% by 2015. In countries where the prevalence of obstetric fistula is high, all curricula for trainee midwives, nurses, and physicians should include not only theoretical training on obstetric fistula prevention but also treatment.
The purpose of this document is to draw attention to the urgent issue of obstetric fistula and advocate for change. It provides essential, factual background information along with guiding principles for clinical management and program development. We hope to contribute to the development of more effective services for women under treatment for fistula repair. We hope our efforts advance effective programs for eliminating obstetric fistula. Most of all, however, we hope that the contents will motivate future research that will further enhance the understanding of reproductive health.
Incidence of Obstetric Fistula:
The obstetric fistula was once common in Western Europe and the United States. It is virtually unknown in these regions today. The prevalence of obstetric fistula has also fallen precipitously in the more industrialized nations of Asia and Latin America; but fistulas remain both prevalent and problematic in Africa and the less developed regions of Asia and Oceania. Throughout the world, but mainly in parts of sub-Saharan Africa and Asia, it is conservatively estimated that more than 2 million young women live with untreated obstetric fistula (1). In sub-Saharan Africa the incidence of obstetric fistula has been estimated to be about 124 cases per 100,000 deliveries in rural areas, compared with virtually no cases in major cities. It has also been estimated that between 50,000 and 100,000 new women are affected each year. Some in-depth studies serve to support the widely held belief that the true number or women living with untreated fistula and suffering the consequent pain and degradation may have been underestimated, suggesting that there may be between 100,000 and one million women living with fistula in Nigeria alone and over 70,000 in Bangladesh. Other studies in Ethiopia, Nigeria and other parts of West Africa estimate the incidence of fistula to be 1-10 per 1,000 births. In Ethiopia it is estimated that 9,000 women annually develop a fistula, of which only 1,200 are treated (2).
Obstetric fistula formation is linked directly to maternal mortality. For an individual woman, the most important statistic is not the maternal mortality ratio, but rather the estimation of her risk of pregnancy-related death across her reproductive lifespan. The majority of maternal deaths are due to five principal causes: hemorrhage, sepsis, hypertensive disorders of pregnancy, unsafe abortion, and obstructed labor. The vast majority of fistulas are due to obstructed labor. Not surprisingly, obstetric fistulas are most prevalent in areas where maternal mortality is high and where obstructed labor is a major contributor to maternal deaths. These are the areas where access to emergency obstetric care is poor and as a result of the lack of effective infrastructure, and poor accurate epidemiological information. This makes difficult to evaluate maternal mortality in general and the evaluation of obstetric fistulas in particular.
Epidemiology of the Obstetric Fistula:
The true magnitude of the fistula problem world wide is unknown, but it is clearly enormous. In absence of good population-based epidemiological studies, most information on fistulas has come from large series of patients seen at teaching hospitals or at dedicated fistula centers. Most are young women or adolescents. Early marriage, early or repeated childbearing along with poverty and lack of access to quality healthcare in pregnancy and at birth, are the main determinants (3). Collective action can eliminate fistula and ensure that girls and women who suffer this devastating condition are treated so that they can live in dignity.
Underlying Social Causes: the overall impression is that fistula patients come from poor rural areas where infrastructure development is rudimentary and access to healthcare -- particularly access to basic midwifery and emergency obstetric services are lacking. Most fistula occur among women living in poverty in traditional cultures, where a woman's status and self-esteem may depend almost entirely on her marriage and ability to bear children. In many parts of the world, women can only achieve social status through getting pregnant. A woman who fails to conceive is less likely than others to be able to settle into a successful marriage. Women who deliver children who all subsequently die do not suffer a similar fate. Infertility and childlessness provoke the stigma, and is still disastrous for women in many parts of the world. The essential task is to proceed with open eyes, not blinded by bias, and to be prepared to take the long way around, should some cultural barrier demand a detour.
Poverty: women who suffer from obstetric fistula tend to be impoverished, malnourished, lack of basic education and live in remote or rural areas. Like many women in remote areas of poor countries, most women who develop untreated fistula give birth at home, without assistance from skilled birth attendants. Many adolescent girls in developing countries may also be undernourished and underweight, thus compounding the risks. Poverty often more likely leads these young girls to be the victims of forced marriages and early pregnancies. In Ethiopia and Nigeria, for example, over 25% fistula patients had become pregnant before the age of 15, and over 50% had become pregnant before age of 18 (4).
The role and status of women: some women may live in seclusion in developing countries, and for many the responsibility to decide to seek healthcare in pregnancy, or even after prolonged labor falls to the husband or other family members. The reality of women's lives, especially in developing countries is such that they neglect their own health. Opportunities to improve their health conditions are indeed limited. The reasons for this are numerous and include among others, the burdens of caring for home, children, family and also the responsibility of food production and preparation. Moreover, women's health also suffers from the low status they are accorded; the lack of an organization and the power to exert any political pressure.
Harmful traditional practices: such as, female genital cutting or mutilation also contributes to the risk of developing obstetric fistula. Such cutting is usually carried out under unsanitary conditions, often by removing large amounts of vaginal or vulval tissue, thus causing the vaginal outlet and birth canal to become constricted by thick scar tissue. These practices increase the likelihood of gynecological and obstetric complications, including prolonged labor and fistula. Although there are few reliable statistics available, these practices may increase the likelihood of such complications by up to seven times. These practices may explain as many as 15% of fistula cases in some parts of Africa (5). Another traditional practice that has been reported to produce fistulas is the insertion of caustic substances into the vagina, either as part of a traditional herbal remedy for a gynecological condition or as part of traditional puerperal practices to "help" vagina return to its nulliparous state. The latter is a part of traditional folk medicine of several Arab countries.
Sexual violence: while most fistula cases in developing countries stem from obstetric causes, others result form direct tearing caused by rape or vaginal trauma. In wartime conditions, sexual violence is common, often used as tactic to intimidate and control. Aid workers in war-torn areas have estimated that one woman in every three is a rape victim and that the majority of new fistula cases are caused by rape (6).
Obstructed labor occurs when the presenting fetal part cannot pass through the maternal bony pelvis. The presenting part then becomes wedged against the maternal pelvic bones, compressing the soft tissues in between. The uterine contractions force the presenting part deeper into the pelvis, compressing the maternal soft tissues more forcibly. If this process is not relieved by surgical interventions, the blood supply to the entrapped soft tissue becomes compromised, ultimately resulting in tissue death and fistula formation. The location and nature of the maternal injury that results from prolonged obstructed labor is a function of the force and duration of the compression that occurs, as well as the level at which labor becomes obstructed. Pressure necrosis is responsible to a great extent for the fistula (7). Women who have sustained an obstetric fistula are usually injured in multiple ways, all of which impact their lives and well-being, and all of which must be considered in their care.
Classification -- Obstetric Fistulas:
Obstetric fistulas may be classified in a number of ways, depending on their location, cause, or complexity. One anatomic classification is as follows (8):
A newer classification of obstetric fistulas allows triage of fistulas based on the anticipated complexity of repair. This classification identifies characteristics of difficult repairs more likely to have significant complications. This approach targets cases for appropriate referrals to specialty centers and encourages general repair efforts of simple fistulas to expand among non-specialists.
Early Care of the Fistula Patient:
The understanding that one must treat the "whole person" with a fistula -- and not just her injured bladder or rectum -- is the single most important concept in fistula care. Doing this effectively requires some understanding of the multi-system consequences of prolonged obstructed labor. The traditional teaching has been that an attempt at repair should be deferred for three months until the extent of the injury has fully manifested itself and any infection/inflammation in the injured tissues has resolved. However, it also appears to be true that some fistulas might be prevented by prompt treatment of women who arrive at a healthcare facility immediately after obstructed labor that some fistulas might close spontaneously if the bladder is drained for a prolonged period of time. If a vesicovaginal fistula is diagnosed within 7 days of occurrence, is less than 1 cm in diameter, and is unrelated to malignancy or radiation, bladder drainage alone for up to 4 weeks allows spontaneous healing in 12% to 80% of cases, but the outcome is unpredictable. Vigorous local care of the injured tissues and prompt antibiotic treatment as soon as patients are seen is recommended (9).
Program Development and Guiding Principles:
Progress in maternal, newborn and child health does not require expensive technology. It does however require health systems that provide continuity of care starting from the beginning of pregnancy (and even before) and continuing through professional skilled care at birth into the postnatal period. Without planning and capacity-building, at national level and within health districts, it will not be possible to correct the shortages and to improve the skills mix and the working environment. The common project that can pull together the different agendas is universal access to care. This is not just a question of fine-tuning advocacy language: it frames the health of mothers, babies and children within a broader, straightforward political project, responding to society's claim for the protection of the health of its citizens and for access to care -- a claim that is increasingly seen as legitimate. Ideally, each country or region in which this problem exists should have its own dedicated center, and centers in neighboring countries should be encouraged to collaborate in sharing information and establishing common protocols for research and training.
There is an urgent need to create an international network of fistula centers in the developing world that can collaborate with one another in advancing the care of patients who have sustained an obstetric fistula. By the time most such patients arrive for surgical treatment, these patients have been cast out and stigmatized by the society in which they live. Many of these women are further stigmatized by unwarranted beliefs about why they develop a fistula in the first place -- such as punishment for some offense against God (adulterous relationships or venereal diseases). That is why specialized fistula units are needed. Such a center can deal with more cases more efficiently than a smaller service attached to a general hospital. Such a center also allows for the concentration of sufficient volume of cases for meaningful training programs to be established through which additional fistula surgeons and fistula nurses can be developed for other centers in developing countries. The large volume of existing cases in developing countries justifies this approach in terms of the sheer numbers of patients involved.
Social reintegration -- women who live, or have lived, with obstetric fistula have endured severe physical, emotional and psychological distress, if not trauma. Surgical repair alone, while going a long way in helping women return to a normal lifestyle, is probably not enough to address the impact of living with fistula or post-fistula repair. The long-term needs of these women for emotional, psychological and economic support after the initial repair of their fistula repair has received little attention to date. These women may also face problems reintegrating into their local communities that may shun them or regard them as unclean or cursed. The reintegration interventions that currently exist generally include the provision of new cloths, training in basic literacy and crafts, and occasionally, funds for transport home and a small amount of cash (10). Strategies need to be developed to provide women with the emotional, psychological and economic support they need. These interventions should be based, first and foremost, on an understanding of the realities of life after surgery faced by girls and women living with fistula so that they receive meaningful help to return to a life of dignity. Mapping of the communities of origin of patients and research on the values and sociocultural principles that prevail in these communities will provide a better understanding of the determinants for fistula which will help to design and implement sound and pertinent strategies. Analysis of, and reporting on, these strategies will contribute further to the development of new reintegration programs.
People in the developing and the industrialized worlds share a common humanity and with this comes a common susceptibility to the pathophysiology that may lead to urinary incontinence. However, the obstetric fistula is the one continence issue that is both unique to and particularly prevalent in developing countries. This disparity between rich and poor nations of the world requires special attention, particularly because obstetric fistulas can be completely and reliably prevented by the provision of proper health and healthcare system. The misery of these patients is utter, lonely, and complete. Constantly in pain, incontinent of urine and feces, ashamed of a rank personal offensiveness, abandoned by their husbands, outcasts of society, unemployed and uneducated, they exist without friends and without hope. Some women can no longer cope with the pain and suffering, and resort to suicide. These young women generally belong to the age group 15-23 years. This remains one of the most glaring and one of the most neglected, issues of international social justice in the world today.
In theory, obstetric fistulas are completely preventable by the provision of adequate, timely obstetric care. The presence of obstetric fistulas in any country, therefore, is an indictment of the quality and effectiveness of its health care delivery system. It is clear most fistulas in developing countries arise from the combination of "obstructed labor and obstructed transportation", but much work is needed to understand the social context in which obstetric emergencies arise and how they are dealt within developing countries. More attention is needed in improving emergency treatment for obstetric complications at existing referral facilities, to upgrading peripheral facilities to provide essential life-saving obstetric care, to educating the community about the danger signs of obstetric complications, and to working with community leaders to improve access to emergency obstetric care in areas where maternal mortality and obstetric fistula rates are high. Good-quality first-level and back-up care at childbirth prevents fistula. Once the condition has occurred it is treatable. The plight of woman living with fistula is a powerful reminder that programmatic concern should go beyond simply preventing maternal deaths. Decision-makers and healthcare providers should be aware that the problem is not infrequent, that the girls and women who suffer from it need support to get access to treatment, that trained physicians and nurses need to be available to provide surgical repair, and that further support is necessary for women who return home after treatment.