PREVENTING HARM
Preventing fistula saves mothers' lives
Skilled obstetric care for all
Women in remote rural areas face greater risks
Delaying, spacing and limiting pregnancies
Educating and empowering women
HEALING WOUNDS
Fistula can be surgically repaired
Training more practitioners is essential
Tackling transportation problems
RENEWING HOPE
The challenge of living with fistula
Ending the suffering in silence
Reclaiming lives after treatment
Finding fulfillment in the next pregnancy
USEFUL PUBLICATIONS (Jan 2012 – Oct 2013)
USEFUL PUBLICATIONS (Jan 2010 – Oct 2011)
PREVENTING HARM
Preventing fistula saves mothers' lives
The two million or more women who await fistula repair were very nearly part of the grim statistics regarding maternal deaths in the world. They survived the physical and emotional trauma of obstructed labour to become living reminders of health system failures. All too often, however, these women have been hidden away and forgotten.
By working to prevent fistula, the Campaign aims to reduce the ongoing tragedy of maternal death and injury . The experiences of women who narrowly survived traumatic deliveries help us understand what is wrong with health services and impart urgency to the challenge of preventing this tragedy from recurring.
Fistula has received little attention in the past because it affects mainly the poorest and most powerless members of society. And because it is a 'woman's problem.'
When fistula is eliminated in Africa and Asia, we will know that real progress has been made in promoting human rights and creating a safer and more equitable world.
Reducing maternal death and injury has been high on the international development agenda since the Safe Motherhood Initiative was launched in 1987. Two major international development initiatives —the International Conference on Population and Development in 1994 and the Millennium Development Goals of 2000— also acknowledged the burden that avoidable death and disability places on poor populations.
In 2010, the United Nations Secretary General, Mr. Ban Ki-moon, launched a global initiative to improve children's and mothers' health. The Global Strategy for Women’s and Children’s Health sets out a plan to save the lives of millions of women and children. It calls for a bold, coordinated effort, building on what has been achieved so far - locally, nationally, regionally and globally.
But getting results has proven difficult. In many countries, progress has stalled. In some cases, especially where poverty and HIV/AIDS are prevalent, maternal deaths and injuries have increased.
The strategy to make pregnancy safer is straightforward:
But putting this strategy into place is challenging because it requires improving and expanding health systems as a whole. This, in turn, requires training, medical equipment and supplies, transportation, medical facilities, standards and protocols, and communication systems. It demands political will and commitment. And for the poorest countries, it will require considerable donor support.
Skilled obstetric care for all
The key to ending fistula is to prevent it from happening in the first place. Skilled attendance at birth, including swift surgical intervention if obstructed labour occurs, can prevent a fistula.
Prolonged obstructed labour puts a woman at risk for fistula and other serious injuries, including death. Unless she receives prompt medical treatment - usually a Caesarean section - the lack of blood flow can cause soft tissues to die, leaving a fistula, or hole, in her bladder or bowel [see diagram]. Fistula has all but disappeared in countries where women experiencing complicated deliveries have access to timely emergency obstetric care.
The longer obstructed labour continues, the more likely it is to cause fistula or death. Delays - in the decision to seek medical attention, in reaching a health care facility, or in receiving emergency obstetric care at the facility - jeopardize both mothers and infants. A skilled attendant with obstetric training can help to recognize danger signs and treat certain complications. But women with obstructed labour need to get to an operating theatre quickly - so back up referral and transport to an appropriate facility also need to be organized ahead of time.
Longstanding customs may also limit a woman's access to obstetric care. In some cultures, women are expected to give birth at home, sometimes with no help, or with the help of traditional midwives. Husbands, male relatives or mothers-in-law may be the ones to decide what care a woman receives, and cost may play a large part in the decision.
About 15 per cent of all pregnancies result in complications and require emergency medical intervention. Caesarean sections to relieve obstructed labour are needed for between 5 and 15 per cent of all births. However, an assessment of health care in West Africa found that Caesarean sections represented fewer than 1 per cent of births in some of the countries surveyed.
Women in remote rural areas face greater risks
In rural areas where fistula is most common, hospitals are spread out over vast distances and transportation systems are often rudimentary. Women often rely on traditional midwives, who may fail to recognize danger signs in time and in any case do not have the medical skills or equipment to provide life-saving interventions in emergencies.
Some women in the throes of labour travel for many hours - or even days - by bus, donkey cart or on foot to reach a hospital or medical centre that can help them. Often by the time they get there, it is too late. Health care providers in Ethiopia estimate that it takes women 2.5 days on average to reach an operating room. By that time, the foetus will most likely have died and the woman will have undergone significant physical trauma.
Delaying, spacing and limiting pregnancies
Delaying early pregnancies, spacing births and limiting total pregnancies are all ways to significantly reduce fistula as well as other maternal and infant injuries and deaths.
Teenage pregnancies are risky, and the younger the girl, the higher the risk. Girls under 15 are five times more likely to die in childbirth than women in their twenties. Many of those who survive obstructed labourhave a stillborn baby and tragically end up with fistula. Thus, delaying a girl's first pregnancy is a critical strategy for reducing fistula and maternal deaths.
The dangers associated with early pregnancy are the reason the Campaign also advocates for alternatives to child marriage. Young married girls are often pressured to get pregnant soon after marriage and may face a variety of barriers to accessing voluntary family planning services. In spite of laws against early marriage, 82 million girls in developing countries will be married before they turn 18. About half of all teenage girls will have their first child by the time they turn 18.
Too many pregnancies, or closely spaced births, are also detrimental to women's reproductive health and can result in complicated pregnancies, fistula, other injuries or death. Meeting the existing demand for family planning services would reduce maternal deaths and injuries by at least 20 per cent. However, in many of the countries where fistula is common, use of contraceptives is very low.
Poor reproductive health and poverty are part of a vicious cycle. Poverty makes it difficult for women to protect their reproductive health, and poor health drags them deeper into poverty.
Poverty robs people of choices. It contributes to fistula by closing off options at critical points in a woman's life. Poor women often have little choice over who or when to marry. They are less likely to have a say in their education or delivery care. If they do develop fistula, they have great difficulty finding the resources for treatment.
Extreme poverty prevails in many of the countries where fistula is most common, and undermines entire health systems. The HIV/AIDS epidemic has made matters worse. As a result, health centres and hospitals are often short-staffed, poorly equipped and unable to provide an adequate level of care. This poor quality of care is a reason some pregnant women avoid seeking medical attention: they associate hospitals with illness and death.
Early marriage is linked with poverty. In poor households, girls may be considered an economic liability and married off at a very young age, often without their consent. But early marriage tends to perpetuate the cycle of poverty. Conversely, girls who are educated are more likely to marry and start childbearing later and have smaller and healthier families.
In some cultures, families believe that early marriage can protect girls' reputations and secure their futures. But this can also mean a denial of their basic human rights, including the right to education, good health, economic opportunities, friendship with peers and free choice as to whether, to whom or when to marry. As UNFPA Executive Director Thoraya A. Obaid has said, "Girls are not free if they cannot go to school. Women are not free if they are expected to marry early and bear many sons."
Eradicating poverty, as called for by the Millennium Development Goals, is an overarching aim of many international organizations. UNFPA and its partners in the Campaign to End Fistula focus on tackling poverty primarily through interventions to improve women's reproductive health and rights. Reproductive health interventions also have far-reaching and inter-generational effects in terms of reducing poverty, and have been shown to be cost-effective entry points to ending the cycle of poverty.
UNFPA helps mobilize donor support to provide essential reproductive health services, equipment and supplies for countries that cannot afford to pay for them. The Fund also supports skills training and income-generating projects for women and adolescents, so they can break out of a cycle of poverty and have options beyond early marriage.
Educating and empowering women
Helping women gain greater power - and providing them with more options in life - are keys to improving reproductive health generally and reducing fistula.
In countries where fistula is common, women may have little control over their own lives. They may also have little control over how resources are spent, in spite of their considerable paid or unpaid labour. And in the rural areas where fistula is most common, communities may be tightly bound by cultural practices and traditions, some of which make it difficult for women to protect their reproductive health.
In many cases, husbands, brothers or other family members make important decisions, including those having to do with childbirth. They may be poorly informed about the risks of childbirth and the need for medical care. Informing men about reproductive health issues through community-based advocacy activities can encourage and empower them to be better partners in this regard.
In some cultures, women cannot even leave the house without the permission of the husband, father or in-laws. Girls are less likely to complete their education than boys. Girls and women are also less likely than boys and men to get enough to eat. The resulting malnutrition or anaemia may stunt growth and contribute to poor pregnancy outcomes.
It's one thing to repair the horrific physical damage. It's harder but even more urgent to prevent the damage in the first place. That means confronting the social and economic ills that underlie girls' and women's vulnerability to fistula.
In places where women can freely make decisions about their reproductive lives and where they can pursue school or work, they overwhelmingly choose to delay the birth of their first child and to have fewer children. Both choices lead to fewer problems with childbirth, and to healthier mothers, children and families.
Education is a powerful lever to empower women in other ways as well. Educated women understand the need for appropriate care during pregnancy and childbirth. They have more power to assert and protect themselves. Improving women's education helps reduce fertility and child malnutrition and improve maternal and child survival.
UNFPA and many of its partners in the Campaign to End Fistula also work to promote gender equality, which is one of the eight Millennium Development Goals agreed upon by world leaders in 2000. A benchmark for achieving this is equality in girls' and boys' enrolment in primary and secondary schools.
Although efforts to promote girls' education also tend to delay too-early marriage and pregnancy, changing deeply entrenched traditions requires sensitivity and patience. In many countries, UNFPA works with influential community and religious leaders and traditional healers and midwives, who in turn, can be very effective in mobilizing support for women's right to reproductive health.
HEALING WOUNDS
Fistula can be surgically repaired
Fistula cases require specialized surgery. Costs vary, but are usually well beyond the means of most women with fistula.
Fistula surgery is essentially the mending of a hole in the bladder or rectum. It can usually take place through the vagina without a major incision. Success rates can be as high as 90 per cent for experienced surgeons working in well-equipped facilities. But the operation is delicate, and specially trained surgeons and support staff are required. Two or more weeks of post-operative care is also essential.
Some women are so debilitated when they arrive for treatment that they need weeks or months of care before they are strong enough to undergo the operation. Sometimes women have also suffered nerve damage and need extensive physical therapy. Counselling to address emotional trauma and social support is often necessary for complete healing.
Many women with fistula also have suffered nerve damage to the legs and require extended physical therapy. In some cases, injury to the internal organs is so extensive that more than one surgery is required. Some women are so badly damaged that they cannot be cured, but need continual care. New surgical techniques are being pioneered to improve results and address more severe tissue damage.
Many of those who live with the condition do not know that treatment is available. Once they find out, many girls and women show remarkable determination in mobilizing scarce resources to get help. Sadly, this often means borrowing or selling land or precious assets.
The Campaign supports all aspects of expanding treatment, from training doctors and nurses to equipping and upgrading fistula centres or wards.
The Campaign is also mobilizing funding to provide free or subsidized fistula repairs. And it has encouraged more networking among providers, which has led to the sharing of new treatment techniques and protocols.
Training more practitioners is essential
Skilled and dedicated doctors and nurses, with the support they need to be effective, are central to the challenge of treating women with fistula.
More than two million women are waiting for surgery, and 50,000 to 100,000 more are affected each year. Existing treatment facilities cannot keep up with the new cases, much less reduce the backlog. In some of the countries where fistula is common, entire health care systems are chronically understaffed, and the HIV/AIDS epidemic has stretched systems further.
Doctors and nurses with the skills and experience to treat fistula are in short supply, partly because the work is poorly paid and emotionally challenging. Some doctors who do have the requisite skills to treat fistula are overwhelmed by the demand -- or are less effective than they could be -- due to a lack of operating rooms, essential drugs, supplies or hospital beds.
Special training for doctors is critical, both to increase their numbers and improve their skills. An unsuccessful repair, after a woman has invested all her savings, hope and dreams in its outcome, can be devastating for both the woman and the surgeon. Because post-operative care is critical, specialized training for nurses is also extremely important for successful outcomes. In some fistula centres, former patients provide sensitive and compassionate nursing care.
In some countries, the shortage of skilled local surgeons has created a reliance on teams of visiting doctors. Treatment centres report they are reluctant to advertise these visits - when the word gets out, sometimes so many women show up for treatment that many have to be turned away. One of the lessons learned in the Campaign is that publicity is good, but needs to be complemented by appropriate services so as not to raise false hopes.
Successful fistula repair depends on teams of skilled practitioners to support one another and deliver a continuum of care. The Campaign has recommended the establishment of three new regional fistula treatment and training centres for sub-Saharan Africa. It supports a range of training activities, with an emphasis on a team-based approach.
Fistula centres, or wards dedicated specifically to fistula, offer many advantages—from clinical expertise to the sisterhood that forms among fistula patients.
The Addis Ababa Fistula Hospital, named Hamlin Hospital after its founders, is one of the few hospitals in the world specializing exclusively in the treatment of obstetric fistula.
It serves as a center of excellence, offering training programs and innovating in the field of surgical techniques and methods for physical and psychosocial rehabilitation of fistula survivors. The hospital recently opened a school of midwifery, which also serves as a center of excellence.
In many other countries, general and obstetric hospitals try to create specialized services to treat obstetric fistula. However the lack of trained doctors, facilities and supplies limit the ability of most fistula treatment centers.
Although all options should be considered, creating centers exclusively for obstetric fistula treatment can be costly and difficult to maintain over time. In addition, general hospitals supporting fistula surgery can help reduce the stigmatization of women living with the condition, treating them like other patients.
It seems that a good solution is that women living with fistula are taken care of in hospitals or maternity clinics with an adequate treatment framework and bed-space exclusively for them, ensuring that they have access to the operating rooms in an equitable manner.
A fistula centre or ward, especially if it includes accommodations for long-term patients, provides a protective and nurturing environment for women who have gone through so much. Many find out for the first time that they are not alone in their suffering. "The interaction among these patients, telling their stories and listening to each others' experiences, creates a 'sisterhood of suffering' that is one of the most important aspects of their treatment. This is 'holistic' medicine at its finest - surgical cure combined with emotional support and community spirit," says Dr. L. Lewis Wall, a fistula expert.
Dedicated centres also help raise awareness and understanding about fistula. The very presence of a fistula centre helps bring the condition to wider attention. Doctors and staff at the centres develop a deep understanding of fistula, and often become powerful advocates for its prevention and treatment.
Expanding the role of fistula centres is a key strategy of the Campaign. As the Campaign is launched in each country, an important task is to identify and support health facilities that have the potential to serve as fistula centres for treatment, training and convalescent care.
Already, the Campaign has encouraged communication and networking among fistula centres, which will facilitate training, research, advocacy, development of universal standards and fundraising.
Tackling transportation problems
For women who live in remote rural areas, limited transportation options make it difficult to get emergency care when complications of labour arise. Expensive and arduous journeys are also barriers to women getting repaired.
In areas where fistula is prevalent, roads and transportation are often rudimentary, and hospitals and health centres are spread over wide distances. In areas of steep terrain, small donkeys or carts may be the only transportation options, and distance is measured out in hours or days rather than miles or kilometres. From some rural villages, it can take up to five days for a woman to get to a hospital that can perform an emergency Caesarean section, and by then it is often too late to save the baby or prevent a fistula. All too often, the mother dies as well.
When women with fistula hear about the possibility of a cure, they often make heroic efforts to get help. Some women travel for weeks or months, often across forbidding terrain, by foot, donkey cart or bus in search of treatment. Taxis or buses sometimes refuse to let them ride. Often they have to sell precious livestock, their only capital, or borrow money to make the trip. Some of these 'fistula pilgrims' exhaust their resources getting to treatment centres and rely on contributions to make their way home. One woman in Mali walked 340 kilometres to reach the hospital at Bamako.
Transportation strategies are recognized as being crucial to ending fistula, both in terms of getting women to obstetric care to prevent fistula from occurring and in getting them treated once they have the condition. In several countries, UNFPA has supported the purchase of ambulances or 4-wheel drive vehicles, as well as two-way radios to reduce the time it takes for women in labour to reach emergency obstetric care. UNFPA also promotes incentives to get more doctors and midwives working in rural areas.
Until the Campaign to End Fistula started its work, many of the efforts to treat the condition were undertaken by extraordinary and dedicated individuals and institutions. Some of these 'fistula pioneers' have become revered for their work to restore the health and dignity of women suffering with fistula.
When she first came to work in Ethiopia more than 40 years ago, Dr. Catherine Hamlin was told: "The fistula patients will break your heart. There's nothing you can do for them." But she and her late husband, Dr. Reginald Hamlin got beyond the heartbreak and found a way to help these women. They pioneered fistula repair in Ethiopia, and in 1974 established the Addis Ababa Fistula Hospital. The hospital, which provides free medical care to and has treated more than 25,000 women, was the institutional winner of the UN Population Award for 2004. Dr. Hamlin herself has received numerous awards and honors for her work (including a nomination for the Nobel Peace Prize) and has earned the unwavering love of thousands of women.
More than 40 years ago, while in residence at a hospital in Eastern Sudan, Dr. Abbo Hassan Abbo was moved by the plight of the fistula patients. When he heard about a British doctor experienced in fistula repair, he convinced the Sudanese government to send him to Oxford University for training. On his return to Sudan, Dr. Abbo tried to provide treatment for the women suffering from fistula, but the conditions at the hospital were difficult and supplies were often not available.
In 1972 he was transferred to Khartoum Teaching Hospital where he managed to open a small unit for fistula repair with scarce resources and limited space. "Once you begin treating the fistula patients, you can't leave them," he says. In 1989, a visiting French nun saw the situation and committed funds to create a fistula treatment centre. That same year the government officially opened a fistula treatment center at Khartoum Teaching Hospital. The name was later changed to Dr. Abbo's Fistula Center, in recognition of his dedication to the cause.
Ms. Maggie Bangser, an American who has lived in Tanzania for over a decade, is a tireless advocate for girls and women with fistula and against fundamental inequities that threaten the wellbeing of the poor. Her organization, the Women's Dignity Project, helps women and girls with fistula access treatment. It also confronts the underlying social, gender, equity and human rights issues that exacerbate girls' and women's vulnerability to fistula. The Women's Dignity Project is now working with the Tanzanian government, hospitals and a range of partners to create countrywide programs. Women's Dignity Project also works throughout Africa, and internationally to address fistula and the determinants of the condition.
Dr. John Kelly's work in the mid-1960s at a mission hospital in Nigeria sparked his interest in the developing world. In 1970, he assisted Drs. Reginald and Catherine Hamlin at the Addis Ababa Hospital, and has been back each year for the past 35 years. After seeing how much they were able to accomplish in Ethiopia, he put his efforts toward making a similar difference in Somalia, where he worked for five years until war broke out. He has performed about 3,000 fistula repairs in the developing world since meeting the Hamlins. Each, he says, is a unique experience. "I've learned far more and I've gained far more than I've ever given from working with these poor women. They may not have much education, but they're certainly full of intelligence and dignity." Kelly gave up his Birmingham practice in 1996 and now spends six to nine months each year in Africa and South Asia repairing fistulas.
Dr. Kalilou Ouattara was trained in fistula by a retired Senegalese doctor who had devoted his career to fistula patients. After working alone for several years at the University Hospital of Point-G in Bamako, Mali, he now leads a team of four urologists who all perform fistula repair. Their work is not well paid, says Dr. Ouattara, but the joy that accompanies each successful operation makes him anxious to take on the next. "If you are around fistula patients, it weighs on your conscience so much you can't stand by and do nothing," he said in a June 2004 interview. Until recently, fistula repair at the hospital was limited because the hospital had only one operating theatre for all its patients. With the help of the Campaign, an additional operating room has been equipped and reserved for fistula, bringing the facility's capacity to a total of 16 repairs per week.
Dutch surgeon Dr. Kees Waaldijk originally came to northern Nigeria to work with leprosy patients. But it is his work with fistula, spanning the last two decades, that he considers his real calling in life. Over the years he has treated some 21,000 women (he keeps a record of each case), pioneered many innovative surgical techniques and protocols, and trained hundred of doctors and nurses. Although he now performs about 1,500 fistula operations annually at the Babbar Ruga Hospital and plans to expand its training capabilities, the case load there continues to grow. "Obstetric fistula is a major public health problem on the rise in developing Africa, simply because the number of childbirths is increasing without a concurrent increase in the quantity and quality of the health services," he explained in a recent presentation to fistula experts.
RENEWING HOPE
The challenge of living with fistula
Without treatment, fistula often leads to social, physical, emotional and economic decline. Although some women with fistula display amazing courage and resilience, many others succumb to illness and despair.
The misery of fistula is relentless. In spite of one's best efforts to stay clean, the smell of leaking urine or faeces is hard to eliminate and difficult to ignore. The dampness causes rashes and infections. The cleaning up is constant, and pain or discomfort may be a continuous as well. The grief of losing a child and becoming disabled exacerbates the pain. The courage many women show in the face of these challenges is extraordinary.
The injury leaves women with few opportunities to earn a living, and many have to rely on others to survive, or turn to begging or commercial sex. In some communities they are not allowed to have anything to do with food preparation and may be excluded from prayer or other religious observances. Although many women with fistula have supportive families, the smell can drive even loving husbands and friends away. For many women, the profound social isolation is worse than the physical torment.
The pain and loneliness associated with fistula is often compounded by a sense of shame and humiliation. In some communities, the condition is seen as a punishment or a curse for an assumed wrongdoing, rather than as a medical condition. The stigma associated with the condition keeps many women hidden away. Some go into deep physical and emotional decline and may resort to suicide. And because so many women with fistula remain marginalized and out of sight, many policy makers - and even some health providers - have failed to recognize the scope and severity of the tragedy.
Ending the suffering in silence
Discussing fistula openly can help reduce the stigma associated with it. And learning that the condition is treatable can transform the lives of those who had lost hope.
In many places, fistula is so misunderstood that there is not even a word that precisely describes the condition: it is referred to as simply the 'urine problem' or 'the childbirth injury'. Women with fistula have been called 'destroyed women' or 'she who is no longer a woman'. Correcting myths about fistula, and providing accurate information about its causes and cure, can help prevent it from occurring, encourage compassion for those who endure it and lessen the stigma that is often attached to it.
Many of the girls and women with fistula are isolated, with little news of the outside world. Those who do not find out that a cure is possible may become resigned, demoralized or deeply depressed. The knowledge that fistula can be cured can transform the lives of those on the verge of giving up.
Word of fistula treatment often spreads rapidly even in remote areas. By talking about her experiences, a woman who has been treated for fistula can motivate others to seek care as well. Some treatment centres are reluctant to advertise fistula repair beyond word of mouth because they fear having to send patients away without treatment.
The Campaign is educating individual women and men, communities, policy makers and health professionals about how fistula can be prevented and treated. Ending the 'culture of silence' that has surrounded fistula is a major strategy for improving lives and mobilizing resources.
The Campaign has helped bring the issue to the attention of millions of people in the developed world.
Reclaiming lives after treatment
Women with fistula have endured enormous psychological and social trauma, often at a tender age. Empowering them to reclaim their place in society is a major goal of the Campaign.
Surgical repair of their medical condition offers women with fistula the chance to return to a full life. In some cases, however, the disability has eroded their social and economic status, or worn away their self-esteem. Some fistula centres are able to provide basic education, training in income generating skills, and psychosocial support to help clients reintegrate into their communities.
Health education and counselling are key components of post-operative care. Women are advised on when it is safe to resume sexual activity and get pregnant. They are provided with or referred to family planning services. In areas with high HIV prevalence, prevention counselling is also encouraged. Following surgery, women are sometimes provided with a booklet or card describing their medical history and the need for a Caesarean section in the event of another pregnancy. Support for social reintegration is a component of several initiatives supported by UNFPA and its partners.
Finding fulfillment in the next pregnancy
Once they have been surgically repaired, many women can go on to enjoy rich lives and bear healthy children.
Some women who have gone through the suffering of fistula and the loss of a child never want to experience labour again. However, in many cultures, motherhood and childbearing are central to women's identity and social status, and many of the young women who are treated for fistula still have long lives ahead of them. Often, they desperately want to marry – or return to their husbands – and bear children. In most cases they can, so long as the pregnancy is closely monitored to prevent the possibility of complications. Usually a Caesarean section is recommended.
Post-operative medical counselling is critical. Women are advised on when it is safe to resume sexual activity and get pregnant. They are provided with or referred to family planning services. For women who do not want to go through another pregnancy, contraceptives should be made available. In areas with high HIV prevalence, counselling on prevention is encouraged. Information on how to avoid infection and condoms should be offered. After surgery, women might also receive a booklet or card explaining their medical history and the necessity of Caesarean sections for future pregnancies.
USEFUL PUBLICATIONS (Jan 2012 – Oct 2013)
USEFUL PUBLICATIONS (Jan 2010 – Oct 2011)
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