FIGO initiative for the prevention and treatment of vaginal fistula

Pregnancy and childbirth should be viewed as a special time in the lives of women and their families. Unfortunately, for many women, this is also a time of great danger. Throughout the world, maternal mortality claims the lives of half a million women each year, tearing apart families and leaving children without the life-saving protection of a mother. For every woman who dies in childbirth, many more remain alive, but scarred by permanent disabilities. An obstetric fistula is, without a doubt, the most severe of all of the pregnancy-related disabilities. Not only are the physical consequences tremendous, but it is difficult to imagine a condition more devastating to the social status of a girl or woman. A fistula, or hole between the bladder and vagina, or rectum and vagina, leaves a woman permanently incontinent and with genital ulcerations, frequent infections, and a terrible odor. Current data on the prevalence of fistulas are virtually non-existent, although the problem has been reported throughout Africa and some parts of Asia, and most likely exists elsewhere as well. Because fistulas are surrounded by shame and dishonor, many women suffering from the problem hide it. In many situations, early marriage and childbearing contribute to the fistula. Young girls, given in marriage too soon, face tremendous social obstacles related to the fistula. In addition to physical discomfort, they are often ostracized and may be left struggling for survival, abandoned by their husbands and families. Most will have no children. The same factors that lead to the occurrence of a fistula, poverty and lack of access to health care are those that prevent women and girls from having the fistula repaired. According to current estimates, there are two million women in sub-Saharan Africa with vaginal fistulas as a result of problems in childbirth. One of every 12 women in Africa dies in childbirth, and many more find their lives destroyed by childbirth injuries—most of them caused by untreated obstructed labor. In Western countries, obstructed childbirth is almost always successfully overcome with proper medical assistance. However, in many developing countries, access to the necessary procedures is nearly impossible for those who live in remote areas. In such countries, often adolescents and very young women with a small or contracted pelvis, or a badly positioned child, may be in labor for days. The excessive pressure of the fetal head or other body part can then cause necrosis of the bladder and/or rectal wall, along with that of vaginal wall tissues, resulting in fistulas. Today, an estimated two million women throughout the developing world suffer from the result of such injuries, i.e. the impossibility to control the leakage of feces and/or urine. The problem persists, in great part, because of the sense of shame attached to the condition, the lack of decision-making power available to women in developing countries, and the absence of knowledge in these countries of the possibility of a surgical cure. The problem of fistulas was highlighted at the Opening Ceremony of the Washington, DC, 2000 FIGO World Congress by Dr. Nafis Sadik, Director of UNFPA, Under-Secretary General of the United Nations, and recipient of a FIGO Recognition Award. The incoming FIGO Executive Board that met in January 2001 mandated The Lord Naren Patel to take action on this initiative on behalf of FIGO. The problem of fistulas is illustrated by the case history below. Ayelech was married young. She does not really know her age, but she knows that her husband was chosen for her. She went to live with him and had a sexual relationship with him before her first menstruation. Her life had always been hard, as she worked in the fields from a young age, was deprived of an education and even of a childhood, and was fed only what the men and boys of the family did not eat. She became pregnant and worked in the fields throughout her pregnancy. She was fearful of her impending labor, having seen what other women of the village had gone through. Yet when the day came for her labor she did not expect it to be so painful. She squatted on the cold mud floor of her little hut, trying desperately to find a way to sit to ease the pain, but she was able to get no relief. Her mother-in-law tried to soothe her by rubbing boiled butter over her abdomen, but this only burnt her and added to her suffering. As the hours turned into days, she became sick, tired, and dehydrated. Confused, she was unable to hear and comprehend what her mother-in-law was telling her. Her mother-in-law began to look to her like a blurred haze. On and on the pains went, into the next day and then the next. She cannot recall when she felt that the baby was not moving any more, but at some point, she knew her child was dead. Still, the labor pains went on. She cannot remember what happened after that, but she does remember being told that the baby was born dead and that the birth was over. She felt some relief that her days of suffering were now over, but sadness that her little child, the one that had been moving and growing inside her for these long months, was now dead. Perhaps she could now regain strength and start to feel better. But she lapsed in and out of consciousness. A few days later, however, another suffering started. She began leaking uncontrollably from her bladder, all over the mud floor of her hut. She had sustained one of the most feared consequences of an unattended obstructed labor: a vesico-vaginal fistula. She was carried to a small room in another nearby hut and the village women all came to offer advice. She was given small amounts to drink, even smaller amounts to eat, and slowly, slowly, life filled her body again. But still the leaking continued. It was 4 weeks before she was strong enough to walk by herself, and she felt shame as everywhere she went, everywhere she sat, her urine ran down her legs, onto her clothes, into her shoes, onto the floor. Months passed and her condition did not improve. She tried to drink less, but still the urine came. The traditional healer was consulted but could not help, and neither could her husband. He clearly saw that his wife could not fulfill her marital duties or work in the fields and asked her to leave. She returned in shame to her father and mother, who cared for her but could not understand what had happened to their daughter. Months turned into years. No one came to visit her anymore and she felt ashamed of her odor. A small hut was built for her towards the edge of the family compound. She stayed indoors most of the time. Her mother would bring her food, but there wasn't enough water to keep her clean and she grew more filthy, lonely, and depressed, without any hope that her situation would ever change. Stories such as this one have occurred ever since women began to give birth, and physicians have recognized fistulas as a problem since antiquity. The first known reference to a fistula is found in a papyrus dating to 1550 BC and purchased by George Ebers in 1872, hence called the Ebers papyrus [1]. A sentence on this rather large document possibly refers to an obstetric fistula: “Prescription for a woman whose urine is in an irksome place: if the urine keeps coming and she distinguishes it, she will be like this forever.” This statement certainly did not offer the women of antiquity any hope for a cure. Obviously, this affliction was present well before anyone described it and, indeed, a vesico-vaginal fistula can be clearly seen in the mummy of Queen Henhenit, dating to 2050 BC [2]. The first person to record the link between a long obstructed labor and incontinence was probably an Arabo-Persian physician, Avicenna, who lived in the 11th century and wrote about it in his textbook, Al Kanoun. It was not until several centuries later, in the 17th century, that the first successful closure of an obstetric fistula was recorded by a Swiss physician named Johann Fatio. He used techniques developed by a Dutch doctor, Hanrick van Ronnhuyze. The individual credited with the most work related to the care of women with fistulas, however, was the “American father of gynecology,” James Marion Sims. Sims worked tirelessly despite repeated failures, performing 50 operations before he secured his first success. Thereafter success came more frequently, so much so that he opened the world's first ‘fistula hospital’ in New York. It opened in 1855 and was called the Woman's Hospital. It has since closed and the Waldorf Astoria Hotel now stands on the site. Doctors now operating in New York may have heard of obstetric fistulas, but they are unlikely to have ever seen one. This complication of labor has vanished from the developed world with the advent of safe and expedient obstetric services; elsewhere, however, most women live without such facilities. For countries such as Ethiopia, in which maternal mortality might be as high as 2000 deaths per 100 000 live births [3,4], maternal morbidity is commonplace. If a woman suffers from obstructed labor in a village, two and maybe more days will pass before action is taken to secure help. When that decision is made and transport mobilized, be it a stretcher carried by the men of the village, a mule-drawn cart, or a truck to be waited for beside a road, more time has passed. If the woman eventually reaches a health center, that center may be ill-equipped to deal with an obstetric emergency, or the physician may have inadequate training. If the patient and her family are then referred to another health center, in their rural understanding, they will not imagine a center more sophisticated than the one they have just come to. They will perceive their referral as a proof that nothing more can be done and return to their village where the patient may die; or, if she survives, she will deliver a stillborn baby and suffer an obstetric fistula. Even if she does reach a center with an adequately trained staff and appropriate facilities, she may experience further delay in receiving help. The family may be asked for money to buy gloves and basic surgical supplies before she is examined, and it may take time to reach and organize the operative staff. This constitutes the ‘three delays’ quoted as one of the reasons for inadequate obstetric care provision: the delay in deciding to get help, the delay in reaching help, and the delay in the implementation of help. Even this amount of help, of course, depends on whether the woman lives within reach of a health care facility. Most women in countries like Ethiopia do not have access to any health care facility and will remain in labor in their village until they die or deliver their stillborn child. It is estimated that about 0.3% of pregnancies in the developing world will end up with the mother having an obstetric fistula [5]. Other estimates put this figure at 0.8% and even as high as 4% in northern Pakistan. If the more conservative figure is used, this would mean that there are at least 100 000 new cases of obstetric fistula per year, but the incidence has been quoted as high as 500 000. There are at least 2 000 000 women living with fistulas in Africa alone [6] and, as with the other estimates, this one might be too low. This suffering was until recently largely unnoticed and women with fistulas lived ostracized lives without any hope of ever seeing their situation change. Then, new hope became possible when the world's second fistula hospital was opened in Ethiopia in 1974 by a dedicated Australian couple, Drs. Reginald (Reg) and Catherine Hamlin. Fig. 1 shows Dr. Catherine Hamlin and her colleagues at the Addis Ababa Fistula Hospital, the world's second fistula hospital. Dr. Catherine Hamlin and her colleagues at the Addis Ababa Fistula Hospital, the world's second fistula hospital. Drs. Reg and Catherine Hamlin arrived in Ethiopia in 1959 to start a midwifery school; but soon, noticing women with vaginal fistulas desperately seeking help, they decided to make it their lives’ work to help them. Ethiopia is still one of the poorest countries in the world, with one of the highest maternal morbidity and mortality rates. It is estimated that about 8900 new cases of obstetric fistula occur in Ethiopia each year, and the Addis Ababa Fistula Hospital treats 1200 cases per year and has treated close to 26 000 women over the years. Even so, there are still hundreds of thousands of women in Ethiopia alone waiting to be cured. It was the late Reginald Hamlin's dream that a light for these women would be lit across Africa, and that dream is being realized. Several centers around the world are now treating obstetric fistulas. In Nigeria, a network of fistula centers is treating up to 1400 patients each year [7], and dedicated practitioners repair fistulas in Tanzania, Kenya, Uganda, Mozambique, Niger, and Gabon, to name but a few countries. Soon the first obstetric fistula unit for Southeast Asia will open in Bangladesh. Most of the persons working in these other countries were trained and inspired by the work of the Hamlins, and the Addis Ababa Fistula Hospital remains a training center whose work and vision keeps expanding, realizing Dr. Hamlin's dream. As stated, obstetric fistulas scourged the lives of women some 150 years ago in the Western world, where they are now largely prevented. They can also be prevented in the developing world, but the task is immense. It has been estimated that to prevent any new cases of fistula from occurring in Africa, there need to be at least 75 000 new obstetric units built [8]. This will mean finding funding for these buildings, and training and paying 75 000 doctors or health care workers and midwives to staff them, and finding and paying auxiliary staff, plus facing the ongoing costs. The governments of poor countries are not in a position for such an undertaking; and even if they were, many other aspects of development would have to be addressed. Roads would have to be built and communication networks set in place. Patients would have to be able to afford to get to these units; they would have to be educated to know that monitoring and medical care during pregnancy and labor is normal, not a sign of disease. They should be able to receive antenatal and intrapartum care—and if they refused it, they would at least need to know where to find help early in labor. In the face of such tasks, the problems of women with obstetric fistulas will be with us for a long time. More practitioners are being trained, but in an increasingly materialistic society, it is difficult to find persons who will commit themselves to helping these women. The women's condition reduces them to even greater poverty, and they are unable to pay for their treatment. Caring for them is a charitable exercise and running the necessary hospitals and services relies largely on donations from the developed world. Some individuals are committed to helping women with fistulas and receive the women's undying gratitude as a reward, but many more such dedicated persons are needed. At the world's current capacity to repair fistulas, it would take at least 400 years to clear the backlog of patients, provided that there were no new cases. At least, now, some of the women with fistulas have a hope of a cure; many will not realize that hope, but at least now they have a voice. The FIGO Initiative for the Prevention and Treatment of Vaginal Fistulas is relatively new. It was pioneered by FIGO and now involves other non-governmental organizations such as UNFPA, WHO, the Averting Maternal Death and Disability Program at Columbia University's Mailman School of Public Health, and the Women's Dignity Project. The Initiative's aim is to ensure that FIGO is at the forefront of activities designed to educate practitioners at the grassroots level about the treatment of vesico-vaginal fistulas. FIGO intends to take a major role in supporting and coordinating activities in this area. In addition to the organizations listed above, it is hoped that others interested in the quality of women's health care will also become involved. Continuation of advocacy activities; Provision of free/subsidized services; Development of training centers; Support for the training of doctors and nurses; Fundraising expansion. To take matters forward, FIGO has allocated US $750 000 of its own resources over 3 years and is seeking matching funding to ensure the Initiative's success. Under the leadership of the Lord Patel, FIGO has been actively working with UNFPA, the Averting Maternal Death and Disability Program at Columbia University, EngenderHealth, as well as a number of other partners to move forward this new activity. Objective 1: Recognizing the outstanding work already done in Africa by many organizations and individuals, the Initiative seeks to bolster two existing centers for fistula repair in Africa by improving the availability of fistula care, and by increasing the capacity for training at these sites. Objective 2: To create additional regional centers for fistula repair in countries of need as an adjunct to an existing hospital able to provide maternity services. This may involve facility improvement, management development, comprehensive provider training, and community advocacy work. Objective 3: To improve access to fistula repair services through the establishment of a special fund, and to support the training of professionals working with fistula repair through the establishment of a fund for training fellowships for surgeons, midwives and nurses, and social workers. Prevention of fistulas has two main foci. One is the prevention of early pregnancy and the factors leading to it. The other is improving access to essential obstetric and basic health care services. Both issues are directly linked to poverty. Large-scale poverty activities are clearly the of this However, the should to support poverty activities and as well as the delay of early marriage and A will be the lack of access to obstetric This will each of the delay in the decision to medical care, delay in reaching a care and delay in receiving care present at the facility. More to be done if the of obstetric fistula by of women is to be prevented and It not only but also all can help, not only by the of the of obstetric fistula, but by time to and to in the community so that more can become involved. FIGO is at to do interested in helping us in any way should FIGO the FIGO at