Thursday, 27 September 2012

“She is Not Dead, But she is Not Living”

What is Rectovaginal fistula?
A rectovaginal fistula is an abnormal connection between the lower portion of your large intestine — your rectum — and your vagina. Contents of your bowel can leak from the fistula, meaning you might pass gas or stool through your vagina.
A rectovaginal fistula may result from an injury during childbirth, a complication following surgery, cancer or inflammatory bowel disease, such as Crohn's disease. However, in Western countries rectovaginal fistulas occur only rarely.
The symptoms of a rectovaginal fistula often cause emotional distress as well as physical discomfort. Though bringing up the subject with your doctor may be difficult, it's important to have a rectovaginal fistula evaluated. Some rectovaginal fistulas may close on their own, but most need to be repaired surgically.
Symptoms
Depending on the size and location of the fistula, you may have very minor symptoms or significant problems with continence and hygiene. Signs and symptoms of a rectovaginal fistula may include:
Passage of gas, stool or pus from your vagina
A foul-smelling vaginal discharge
Recurrent vaginal or urinary tract infections
Irritation or pain in the vulva, vagina and the area between your vagina and anus (perineum)
Pain during sexual activity
When to see a doctor
If you experience any signs or symptoms of rectovaginal fistula, make an appointment to see your doctor. A fistula may be the first indication of a more serious problem, such as an area of infection where pus has collected (abscess), or cancer. It's important that your doctor identify the cause of the fistula and determine whether and when it should be repaired. Depending on the cause of your fistula, your doctor may refer you to a colorectal or gynecologic surgeon.
Causes
A rectovaginal fistula may form as a result of:
1) Injuries in childbirth. Obstetric injuries are the most common cause of rectovaginal fistulas. Such injuries include tears in the perineum that extend to the bowel or an infection or tear of an episiotomy — a surgical incision to enlarge the perineum during vaginal delivery. These may happen following a long, difficult labor. Fistulas arising from childbirth may also involve injury to your anal sphincter, the rings of muscle at the end of the rectum that help you hold in stool.
2) Crohn's disease. The second most common cause of rectovaginal fistulas, Crohn's disease is a type of inflammatory bowel disease in which the lining of your digestive tract becomes inflamed. Most women with Crohn's disease never develop a rectovaginal fistula, but having Crohn's disease does increase your risk of the condition.
3) Surgery involving your vagina, perineum, rectum or anus. Prior surgery in your lower pelvic region, such as removal of your uterus (hysterectomy), in rare cases can lead to development of a fistula.
4) Cancer or radiation treatment in your pelvic area. A cancerous tumor in your rectum, cervix, vagina, uterus or anal canal can lead to development of a rectovaginal fistula. Radiation therapy for cancers in these areas can also put you at risk of developing a fistula. A fistula caused by radiation usually forms within two years following the treatment. Before the fistula forms, you may experience pain in your anus or rectum, bloody diarrhea, or bright red blood in your stool. If you spot these warning signs, your doctor will first rule out a return of cancer as the cause.
 5) Other causes. Less commonly, a rectovaginal fistula may be caused by infections in your anus or rectum; infections of small, bulging pouches in your digestive tract (diverticulitis); or vaginal trauma.
Complications
Physical complications of rectovaginal fistula may include incontinence, problems with hygiene, and irritation or inflammation of your vagina, perineum or the skin around your anus. In some cases, a fistula may become infected and form an abscess, a problem that can become life-threatening if not treated. Among women with Crohn's disease who develop a fistula, the chance of another fistula forming later is high.
Expand Arrow DownPreparing for your appointment
You're likely to start by seeing your family doctor or primary care provider. However, in some cases when you call to set up an appointment you may be referred immediately to a doctor who specializes in conditions affecting the female reproductive tract (gynecologist).
Here's some information to help you prepare for your appointment, and what to expect from your doctor.
What you can do
Be aware of any pre-appointment restrictions. At the time you make the appointment, be sure to ask if there's anything you need to do in advance to prepare for common diagnostic tests.
Write down any symptoms you're experiencing, including any that may seem unrelated to the reason for which you scheduled the appointment.
Make a list of your key medical information, including any other conditions for which you're being treated, and the names of any medications, vitamins or supplements you're taking.
Consider questions to ask your doctor and write them down. Bring along notepaper and a pen to jot down information as your doctor addresses your questions.
For rectovaginal fistula, some basic questions to ask your doctor include:
  1. What's causing these symptoms?
  2. Are there other possible causes for my symptoms?
  3. What kinds of tests do I need? Do these tests require any special preparation?
  4. Is this condition temporary or long lasting?
  5. What treatments are available, and which do you recommend?
  6. Will I need surgery?
  7. Do you have any brochures or other printed material that I can take with me? What websites do you recommend visiting?
  8. In addition to the questions that you've prepared to ask your doctor, don't hesitate to ask questions during your appointment if you don't understand something.
What to expect from your doctor
Your doctor is likely to ask you a number of questions. Being ready to answer them may reserve time to go over any points you want to spend more time on. Your doctor may ask:
  1. When did you begin experiencing your symptoms?
  2. Have your symptoms been continuous or occasional?
  3. How severe are your symptoms?
  4. What, if anything, seems to improve your symptoms?
  5. What, if anything, appears to worsen your symptoms?
  6. Are you able to have regular bowel movements?
  7. Do you experience uncontrolled loss of stool, also called fecal incontinence?
  8. Have you given birth vaginally? Were there any complications?
  9. Have you ever had pelvic surgery?
  10. Have you ever been treated for a gynecologic cancer?
  11. Have you had pelvic radiation therapy?
  12. Do you have any other medical conditions, such as Crohn's disease?
Tests and diagnosis
Physical examination
To figure out the cause of a rectovaginal fistula, your doctor will perform a physical examination to try to locate the fistula and check for a possible tumor mass, infection or abscess. The exam includes a visual inspection of your vagina, anus and the area between them. Your doctor will perform a digital exam, inserting a gloved and lubricated finger into your vagina while feeling the perineum with another gloved finger, and then perform a rectal exam by inserting his or her gloved finger into your anus.
Unless the fistula is very low in the vagina and readily visible, your doctor may use a speculum to visualize the inside of the vagina. This may allow him or her to see the opening of the fistula inside your vagina. An instrument similar to a speculum, called a proctoscope, may be inserted into your anus and rectum to check the health of your rectum.
Tests for identifying fistulas
Often a fistula isn't found during the physical exam. A variety of other tests may be used to locate and evaluate a rectovaginal fistula. These tests also help your medical team in planning for surgery.
a) Water and blue dye tests. Filling the vagina with water and the rectum with air can help locate the fistula. Air passing from the rectum through the fistula forms bubbles on the vaginal side of the passage. Another test involves placing a tampon into your vagina, then injecting blue dye into your rectum. Blue staining on the tampon shows the presence of a fistula.
b) Contrast tests. A vaginogram or a barium enema can help identify a fistula located in the upper rectum. These tests use a contrast material to show either the vagina or the bowel on an X-ray image.
c) Computerized tomography (CT). A CT scan is a special X-ray technique that provides more detail than a standard X-ray does. A CT scan of your abdomen and pelvis can help locate a fistula and determine its cause.
d) Magnetic resonance imaging (MRI). This test uses a magnetic field and radio waves to create images of soft tissues in your body. MRI can show the location of a fistula as well as involvement of pelvic organs or the presence of a tumor.
e) Anorectal ultrasound. This procedure uses sound waves to produce a video image of your anus and rectum. Your doctor inserts a narrow, wand-like instrument into your anus and rectum. Anorectal ultrasound can evaluate the structure of your anal sphincter and may show defects caused by obstetric injury.
f) Anorectal manometry. In this test, a narrow, flexible tube is inserted into your anus and rectum and a small balloon at the tip of the tube is expanded. The test measures the sensitivity and function of your rectum and can provide useful information when a fistula is due to Crohn's disease or radiation. This test does not locate fistulas but can help with planning repair.
g) Other tests. If your doctor suspects you may have inflammatory bowel disease, he or she may order a colonoscopy. This test allows your doctor to view your colon using a thin, flexible, lighted tube with an attached camera. During the procedure, your doctor can take small samples of tissue (biopsy) for laboratory analysis, which can help confirm the diagnosis of Crohn's disease. If you've received radiation therapy to your pelvic region, your doctor may do more small bowel tests, including X-rays, to make sure you don't also have a small bowel fistula.
Treatments and drugs
Treatment for a rectovaginal fistula depends on its cause, size, location and effect on surrounding tissues. Sometimes fistulas heal on their own, but most people need surgery to close or repair the abnormal connection. Before an operation can be done, the skin and other tissue around the fistula must be healthy, with no signs of infection or inflammation. Your doctor may advise a waiting period of up to three months before surgery to ensure the surrounding tissue is healthy and see if the fistula closes on its own.
Medications
If the area around your fistula is infected, you'll take a course of antibiotics before surgery. Antibiotics may also be recommended for women with Crohn's disease who develop a fistula. Another medication that may help heal a fistula in women with Crohn's disease is infliximab (Remicade). This drug blocks the action of an immune system protein called tumor necrosis factor-alpha (TNF-alpha), which causes inflammation. Side effects may include chest pain, chills, fever, flushing, hives, itching and troubled breathing.
Surgery
An operation to close a fistula may be done by a gynecologist or a colorectal surgeon. The goal is to remove the fistula tract and close the opening by sewing together healthy tissue around it. The repair may require using a tissue graft taken from an adjacent part of the body, or folding a flap of healthy tissue over the fistula opening. More complicated operations may be needed if the anal sphincter muscles are also damaged or if there's scarring or tissue damage from radiation or Crohn's disease.
To clean out your bowel before the operation, you may take laxatives or follow a liquid diet prior to surgery. This may be followed by an enema shortly before surgery. You'll also be given an antibiotic medication before surgery.
In some more complex or recurrent cases, the surgeon may do a colostomy before repairing a fistula. A colostomy is an operation that diverts stool through an opening in your abdomen instead of through your rectum. This may be needed if you've had tissue damage or scarring from previous surgery or radiation treatment, an ongoing infection or significant fecal contamination, a cancerous tumor, or an abscess. If a colostomy is needed, your surgeon may wait eight to 12 weeks before repairing the fistula.
After an operation to close a fistula, you'll be on a liquid diet for about three days, followed by a low-fiber diet for several weeks. A low-fiber diet reduces the frequency and volume of stools. Your care team may recommend that you take sitz baths two to three times a day and dry off with a blow dryer to keep the area clean and dry.  
Summary
[Fistula] is a condition that denied me the chance to enjoy my life as a young person. I was isolated and rejected. All my nights were nights of shedding tears due to genital sores. I carried the condition for 12 years without knowing that I could be treated here in Kenya.... I made several attempts to take my life and was admitted to [a] mental ward.… In May 2007 a successful surgery was done.… The closure of that hole is not all that these women need. After I was operated on, I was returned to the mental ward again. You realize, I am not dead, but I am not living.
—Amolo A., a Kenya woman who had a successful fistula repair and is a community educator on fistula, Nairobi, November 26, 2009
Medically fistula is caused by obstructed labor. But also there is obstructed transport, obstructed family planning, obstructed emergency care, obstructed rights.… Everything is obstructed.
—Dr. Khisa Wakasiaka, a reproductive health expert and fistula surgeon, Nairobi, November 11, 2009
Tens of thousands of women and girls around the world suffer every year from obstetric fistula, a preventable childbirth injury that results in urine and/or stool incontinence. Fistula causes infections, pain, and bad smell, and often triggers stigma and the breakdown of family, work, and community life.
The full global extent of this problem is not known. According to the World Health Organization, fistula strikes roughly 50,000 to 100,000 women and girls every year, mainly in resource poor countries in sub-Saharan Africa and Asia. In Kenya approximately 3,000 women and girls develop fistula every year, while the backlog of those living with untreated fistula is estimated to be between 30,000 and 300,000 cases. There are many doubts about these estimates because few studies have been conducted to establish the extent of this problem in the country. Fistula sufferers are mostly young women and girls with little education. They often come from remote and poor areas where infrastructure is underdeveloped and access to health care, particularly emergency obstetric care, is lacking.
A woman who develops fistula has already gone through the trauma of a long, painful obstructed labor. In most cases, the labor ends with a stillbirth. As the woman begins to recover from the grief and agony of the failed delivery, she discovers that her body is painfully damaged. She might think that she is suffering from temporary, somewhat normal incontinence. But then she begins to smell, her clothing and bedding are constantly wet, her thighs sting, and she might develop ulcers on her vagina. At first, the woman might try to hide her condition, but usually this is impossible. Sex is painful, and her marriage, as a result, might start to fray or even turn violent. She might be thrown out by her husband, her relatives and friends may think that she is bewitched or cursed. In all likelihood, she will stop working, going to market, and participating in social or religious life. She might live in pain and isolation for years, even decades, before learning that surgery could fix her condition. This news will not be enough for many the fistula survivors who lack the resources and autonomy to pursue surgery. For some, however, surgery provides a chance for a new life.
The Kenyan state violates the rights of fistula sufferers in multiple ways, by denying them their internationally-guaranteed access to the highest attainable standard of health, to health information critical to women’s and girls’ wellbeing, to their reproductive and maternal health, and to a remedy for the injustices and denial of service that they face. Kenya, as a party to numerous international and regional human rights instruments such as the International Covenant on Economic, Social and Cultural Rights (ICESCR), the Convention on the Elimination of All Forms of Discrimination against Women (CEDAW), and the African Charter on Human and Peoples’ Rights (African Charter), is obligated to act to rectify these violations and to eliminate the discrimination that both contributes to the disabling condition of fistula and results from it.
This report is based on field research conducted by Human Rights Watch in November and December 2009 in hospitals in Kisumu, Nairobi, Kisii, and Machakos as well as in Dadaab in March 2010. We interviewed 55 women and girls ranging in age from 14 to 73 years, 53 of whom had fistula. Of the 53 with fistula, twelve were girls aged 14-18 years. We also interviewed nine obstetric fistula surgeons, one anesthetist, three hospital administrators, and nine nurses working in hospital gynecology and labor wards, five of whom worked in fistula wards. We interviewed four secondary and four primary school teachers regarding sexuality education in schools. Further, we talked to nongovernmental organizations working on health and women’s rights, government officials, professional associations for doctors and nurses, international donors, United Nations representatives, and an elected councilor representing a ward in Machakos.
Reproductive and maternal health care are considered top development and human rights priorities. The UN Committee on Economic, Social and Cultural rights has identified the lowering of maternal mortality, and morbidity such as obstetric fistula, as a “major goal” for governments in meeting their human rights obligations. Under the Millennium Development Goals, governments have committed to improve maternal and reproductive health through a 75 per cent reduction in the maternal mortality ratio from 1990 levels, and achieving universal access to reproductive health by 2015.
The Kenya government has taken some positive steps to improve women’s and girls’ reproductive and maternal health. These initiatives include eliminating charges for public family planning services, antenatal and postnatal care, and prevention of mother-to-child HIV transmission. The government has also eliminated charges for delivery in dispensaries and health centers to encourage women to deliver in medical facilities with a skilled birth attendant. In addition, by introducing a system of full or partial fee waiver for access to government hospitals, the government has taken steps to increase access to health care for indigent patients. However, as this report shows through the voices of fistula survivors, many women and girls, particularly the poor, illiterate, and rural, are not fully enjoying the benefit of these policies, and there is urgent need to reevaluate and scale up many of the responses.
The report discusses five areas that require increased attention in order to improve maternal health care and reduce obstetric fistulas: access to family planning information and services, the provision of school-based sexuality education, access to emergency obstetric care including referral and transport systems, overcoming economic barriers to maternal health care services and fistula treatment, and health system accountability.
Women and girls need access to information to make informed choices about their sexual and reproductive lives. They also need information about access to services which help ensure a healthy pregnancy and delivery, and for treating obstetric complications such as fistula. Yet information on reproductive health, family planning, potential complications during pregnancy and childbirth, the advantages of facility deliveries, what fistula is, and the availability and cost of fistula treatment and maternity-related services are all lacking among many of the women and girls we interviewed, and even among some health providers.
For example, 20-year-old Kwamboka W. became pregnant at age 13 while in primary school, developed fistula, and lived with it for seven years before hearing on the radio about a United Nations Population Fund (UNFPA) funded fistula repair camp offering free surgeries. She told us, “I didn’t know anything about family planning or condoms. I just went once and got pregnant. I still have no idea about contraceptives.” Despite some government efforts to introduce sexuality education in upper primary and secondary schools, Kenya has not made it part of the official syllabus and as a result there is no time allocated within school hours to teach it.
In 2004, the government conducted a fistula needs assessment that showed lack of awareness about fistula in communities as a barrier to its prevention and treatment. Six years later, the government has not taken adequate steps to educate the population, nor to correct the myths that exist about fistula in many communities.
The Kenya government’s efforts to ensure affordable maternity care for poor rural women and girls have fallen far short of even its own goals. Upwards of three quarters of the women and girls interviewed by Human Rights Watch described economic constraints as a barrier to accessing maternal health services and fistula repair surgery. Almost all women and girls interviewed for this report told Human Rights Watch how difficult it was to raise the money needed for fistula surgery. To its credit, the government supports donor-funded fistula repair “camps”—consisting of short-term mobilization of women and girls, screening for obstetric fistula, and providing surgery for those affected—in district and provincial hospitals around the country several times a year. These camps offer free repair surgeries, but do not cover all associated costs. In addition, government hospitals offer exemptions and waivers for indigent patients, but these policies have been problematic in practice.
The health user fee waiver policy does not work for several reasons: lack of awareness of the policy among patients and some health providers, some facilities’ reluctance to publicize the waivers and deliberate withholding of information when requested by patients, and vague implementation guidelines, including the criteria for determining the financial needs of a patient. Many women and girls living with fistula are poor, but none we spoke to had received a waiver.
Women with obstructed labor, which can lead to fistula, need emergency obstetric care such as Cesarean sections. Inadequate access to emergency obstetric care, especially for poor and rural women, is a longstanding problem in Kenya. Kenyan government statistics have shown that capacity to manage complications during childbirth is weak in many health facilities, including referral facilities such as hospitals. Currently available statistics show that less than 10 percent of all medical facilities in the country are able to offer basic emergency obstetric care, and only 6 percent offer comprehensive emergency obstetric care.
Moreover, health facilities, especially in rural areas, are perpetually understaffed, further limiting timely assistance and referral when women develop obstetric complications. Many women with obstetric complications develop fistula and experience stillbirth simply because ambulances and fuel are lacking.
In order to correct systemic failures in reducing maternal deaths and obstetric fistula, it is important to get feedback from patients on the quality and acceptability of services provided. But accountability mechanisms, which should serve the purpose of identifying systemic problems in Kenya’s health system, are far from effective. There should be accessible ways of providing such feedback, lodging complaints, and ensuring such feedback is acted upon. Real accountability mechanisms would not only enhance trust in the health system but also improve utilization and success of maternal health services.
Most of the women Human Rights Watch interviewed did not know how, or to whom, they could complain about or challenge any of the above barriers. Nor did they have any faith that complaints would result in improved treatment. They were also afraid of retaliation by health staff if they complained. We found no indication that the government had taken any steps to enable illiterate patients to understand their rights and to lodge grievances.
While fistula surgery is increasingly available, the government and organizations providing repair surgeries have paid little attention to the long-term needs of women and girls for physical, emotional, psychological, and economic support after surgery. There are no formal initiatives by the government or other service providers to rehabilitate and reintegrate fistula survivors into families and communities. Fistula survivors have endured social and psychological torment that is unlikely to end with surgery. Women may continue to be stigmatized even after successful repair due to lack of fistula awareness in communities, and unsuccessful repairs can be traumatizing for women. Further, fistula places a heavy financial burden on survivors and their families, and as a result they may need support to become economically productive after repair.
The World Health Organization has developed important recommendations for clinical management of obstetric fistula, as well as program development to address issues of fistula prevention and rehabilitation. However, Kenya has not developed a national strategy to address fistula despite conducting a needs assessment in 2004. The WHO recommends that national strategies to address obstetric fistula be integrated into existing programs on safe motherhood and those to improve maternal and neonatal health generally, but Kenya is not adequately doing this. 
Key Recommendations to the Kenyan Government
Develop and implement a national fistula strategy in accordance with the World Health Organization’s “Obstetric Fistula: Guiding Principles for Clinical Management and Programme Development.” Relevant government ministries, such as the Ministry of Gender and Children Affairs and the two ministries of health, and NGOs should participate in crafting the strategy.
Carry out an awareness-raising campaign to inform the public about the causes of fistula, contributing factors (such as female genital mutilation and early marriage and childbearing), the need for facility deliveries, and the availability of treatment. Involve provincial administrators, religious leaders, and NGOs in the campaign.
Integrate information on fistula into the community strategy by training community health extension workers and community health workers to educate communities about fistula and to identify and refer for treatment women and girls with fistula.
Expand the Community Midwifery Model to cover the whole country and address payment of community midwives.
Urgently improve the financial accessibility of fistula surgery by subsidizing routine repairs in provincial and district hospitals, including follow-up visits, and providing free fistula surgeries for indigent patients.
Urgently improve the quality of and access to emergency obstetric care by:
increasing the number of health facilities that offer emergency obstetric care;
developing and implementing guidelines on the management of obstructed labor and the management of women who present with obstetric fistula immediately after birth or who present with an established fistula requiring repair;
implementing the referral component of the Community Strategy; and
completing and implementing the referral strategy.
Assess the possibility of an exemption from user fees for all maternal health care, beyond the current exemption for childbirth in dispensaries and health centers.  
Methodology 
This report is based on interviews conducted in November and December 2009 in Kisii, Machakos, Kisumu, Nairobi and Dadaab in March 2010. Our research included visits to three public hospitals that were holding fistula repair camps, and a mission hospital in Nairobi that does routine fistula operations. We also visited several dispensaries and health centers in Machakos and Kisumu.
Because of the difficulty of finding women and girls living with fistula to interview within their communities, we opted to use the fistula camps at hospitals since they presented the opportunity to interview many women and girls from across regional and ethnic backgrounds in one setting. We received immense cooperation and support from the gynecologists who were organizing the fistula treatment camps, and they were our main gateway to reaching women and girls in the hospitals.
We interviewed 55 women and girls ranging in age from 14 to 73 years old—12 were girls aged 14-18 years—53 of whom had fistula. Of these, 35 were waiting to undergo fistula repair surgery, 13 had gone through surgery and were recovering in the hospital, and five had come for review following surgery. We also interviewed two women at Machakos General Hospital who were detained for failure to pay hospital charges following complications during pregnancy. Interviews were semi-structured and covered a range of topics related to fistula and maternal health care. We also interviewed nine obstetric fistula surgeons, one anesthetist, three hospital administrators, and nine nurses working in hospital gynecology and labor wards, five of whom worked in fistula wards. Further, we talked to nongovernmental organizations working on health and women’s rights, government officials, professional associations for doctors and nurses, international donors, United Nations representatives, and an elected councilor representing a ward in Machakos.  
On the subject of sexuality education in schools, Human Rights Watch interviewed four secondary school teachers and four primary school teachers. 
Because of the sensitive nature of obstetric fistula, we were mindful not to re-traumatize women and girls we interviewed. Before each interview, we informed interviewees of its purpose, voluntary nature, the kind of issues that would be covered, and the ways in which the data would be used. The interviewees verbally consented to be interviewed. Further verbal consent was given to record the interviews. Women and girls were told that they could decline to answer questions, could take a break, or could end the interview at any time without consequence.We took great care to interview women and girls in a sensitive manner, and ensured that the interview took place in a comfortable and private setting.
We have changed all the names of women and girls interviewed to pseudonyms in order to protect their privacy. The identities of some other interviewees have also been withheld at their request.
Participants did not receive any material compensation from Human Rights Watch. In order to avoid false expectations of financial assistance or support, we made it clear at the start of each interview that we were not able to provide direct individual support to those who spoke with us. When we encountered situations where women and girls were in need of psychological or other medical support, we referred them to local NGOs or others who could assist them.
Interviews were carried out in English and Kiswahili without interpretation and in Kikamba and Dholuo with the assistance of interpreters. All the translators were female health professionals who understood the sensitivity of interviewing fistula survivors.
Human Rights Watch also reviewed research and reports by national and international health and human rights organizations and UN agencies, as well as government policies and statistics on health care in Kenya.
The report also uses material from an obstetric fistula stakeholders meeting organized by the Department of Reproductive Health in the Ministry of Public Health and Sanitation, attended by the Human Rights Watch researcher. The meeting was held on February 4, 2010, and brought together a range of health providers working on obstetric fistula: fistula surgeons and nurses, hospital administrators, government officials, and representatives from the United Nations and non-governmental organizations working on obstetric fistula. 
I. Background 
Maternal Mortality and Morbidity Globally 
Most obstetric complications and deaths are preventable. The causes of maternal deaths and morbidities and the most effective ways of preventing and treating them have been recognized for many years. Yet, hundreds of thousands of women and girls die every year as a result of preventable and treatable complications during pregnancy, childbirth, or the six weeks following delivery. Estimates on the number of women who die vary. According to estimates developed by the World Health Organization, UNICEF, UNFPA, and the World Bank, over half a million maternal deaths occur globally each year. A 2010 analysis of maternal mortality for 181 countries shows an estimated 342,900 maternal deaths occurred in 2008. Measuring maternal mortality is challenging at best, but the latest available trend data indicate that the global maternal mortality ratio (MMR) declined from 320 per 100,000 live births in 1990 to 251 in 2008. 
 The numbers of women and girls who die do not reveal the full scale of this tragedy. For every woman or girl who dies as a result of pregnancy or childbirth, about 30 more suffer short or long-term injury, infection, or disabilities (maternal morbidities). 
The magnitude of global maternal mortality and morbidity and the profile of those most heavily affected reveal chronic and entrenched health inequalities both between and within countries. First, the burden of maternal mortality and morbidity is borne disproportionately by developing countries, mainly those in sub-Saharan Africa. Second, in many countries, preventable maternal deaths and morbidities more often affect distinct groups of women and girls, such as rural, low-income, ethnic minority, or indigenous women and girls. This is the case even in countries with low maternal mortality ratios. Finally, maternal mortality and morbidity ratios are often indicative of inequalities between men and women in their enjoyment of the right to health. 
The last two decades have seen increased international and regional efforts to combat maternal mortality and morbidity. At the international level, the most significant of these is the Millennium Declaration in 2000, when 189 countries pledged to achieve eight development goals (the Millennium Development Goals or MDGs) by 2015, including a 75 percent maternal mortality reduction compared to 1990 levels. In June 2009, the United Nations Human Rights Council adopted a landmark resolution on “preventable maternal mortality and morbidity and human rights,” which calls on states to renew their political commitment to eliminating preventable maternal mortality and morbidity at the local, national, regional, and international levels, including through the allocation of necessary domestic resources to health systems.In September 2008, the European Parliament passed a resolution on maternal mortality calling upon the European Union to commit to reducing maternal and newborn mortality and morbidity both at home and abroad. In April 2010, the UN Secretary-General announced the development of a Joint Action Plan to accelerate progress toward achieving the MDGs dealing with maternal and child health. 
In 2004, all health ministers of the African Union, with support from World Health Organization Africa Regional Office, the United Nations Population Fund (UNFPA), and the United Nations Children’s Fund (UNICEF), adopted “The African Road Map for Accelerating the Attainment of the MDGs related to maternal and newborn health” (MNH Road Map). Its objectives are “to provide skilled attendance during pregnancy, childbirth, and the postnatal period, at all levels of the health care delivery system, and … [to] strengthen the capacity of individuals, families and communities to improve MNH.” Countries are expected to adopt and to develop national MNH Road Maps to scale up responses to reduce maternal and neonatal mortality and morbidity. According to UNFPA, as of July 2009 more than 40 sub-Saharan African countries had developed national MNH Road Maps and the majority of them were implementing them, but only eight countries had developed national strategies to address obstetric fistula as a specific subset of maternal health concerns. 
Following on this initiative, in 2006 African Heads of State adopted the Maputo Plan of Action (MPoA), which sets out a framework for countries to improve women’s and girls’ reproductive and maternal health. In 2009, the African Union launched a campaign for accelerated reduction of maternal mortality in Africa, with the slogan “Africa Cares: No Woman should Die While Giving Life.” The campaign is meant to help countries achieve the goals of the MPoA. 
Fistula Globally 
Fistula has virtually been eliminated in developed countries but is still common in the developing world. There are no worldwide, comprehensive surveys that estimate the incidence and prevalence of obstetric fistula. Currently available data by the World Health Organization (WHO) indicate that between 50,000 and 100,000 women and girls are affected each year. This is widely viewed as an underestimate as it is based on numbers of people who sought care in hospitals and clinics, while many women with fistula do not seek care. Fistula tends to happen to the most marginalized in society: poor and illiterate young women and adolescent girls from rural areas. Consequently, fistula has largely remained a hidden condition. Many women who develop fistula have stillbirths, contributing to neonatal mortality in countries where they are predominant. 
Causes of Fistula 
Obstetric fistula is predominantly caused by prolonged obstructed labor, which is one of the five major causes of maternal mortality and accounts for 8 percent of maternal deaths worldwide. During the prolonged obstructed labor, the soft tissues of the birth canal are compressed between the descending head of the fetus and the woman’s pelvic bone. The lack of blood flow causes tissue to die, creating a hole (fistula) between the woman’s vagina and bladder (vesico-vaginal fistula or VVF) or between the vagina and rectum (recto-vaginal fistula or RVF) or both. This leaves the woman leaking urine and/or feces continuously from the vagina. Other direct causes of fistula include sexual abuse and rape, surgical trauma (iatrogenic fistula), and gynecological cancers and related radiotherapy treatment.
Most fistulas can be repaired surgically even if they are several years old. Success rates for fistula repair by experienced surgeons can be as high as 90 percent, according to UNFPA. Successful surgery can enable women to live normal lives and even have children, but it is recommended to have a Cesarean section for future deliveries to prevent the fistula from recurring. 
Early Marriage 
Early marriage, marriage before the age of 18 years, is considered a major risk factor for fistula development. Adolescent girls are particularly susceptible to obstructed labor because their pelvises are not fully developed. Early marriage is associated not only with early childbearing, but also with reduced school attendance. This contributes to illiteracy, poverty, and low status in the community. Further, married girls and child mothers face constrained decision-making, including reproductive and maternity care choices, because they are often controlled by their husbands and relatives. Kenya’s Children’s Act prohibits marriage before age 18. Nonetheless, the 2008-09 Kenya Demographic and Health Survey (KDHS) shows that 24.6 percent of Kenyan women aged 20-24 had been married by age 18. 
Female Genital Mutilation 
Female genital mutilation (FGM) can also contribute to fistula occurrence, especially in communities that practice type three female circumcision or infibulation. In many cases of infibulations, the woman is cut during childbirth to allow exit of the fetal head. This is sometimes done by unskilled traditional birth attendants who use razors or arrowheads to perform bilateral upper episiotomies, which may inadvertently extend to the bladder or rectum, causing a fistula. In Nigeria, the “gishiri” cut, a form of FGM similar to infibulation, is commonly practiced amongst the Hausa people. In Nigeria, 15 percent of obstetric fistulas are caused by this harmful practice. FGM is outlawed in Kenya, but some communities still practice it. Infibulation is common in North Eastern Kenya and parts of Rift Valley among the West Pokot. FGM prevalence in these regions is 97.5 percent and 32.1 percent, respectively. This is markedly higher than the 27 percent Kenyan average. 
International Response to Fistula 
There is growing global momentum by international agencies to address the problem of obstetric fistula. In 2003, UNFPA and partners launched a global Campaign to End Fistula with the target to eliminate fistula by 2015, in line with the Millennium Development Goal to improve maternal health. The global campaign focuses on prevention, treatment, and rehabilitation, and has been launched in 47 countries in Africa, Asia, and the Middle East. Recognizing the lack of reliable data on fistula, one of its objectives is to conduct country-level situation analyses, including fistula prevalence, although challenges remain in collecting accurate data. EngenderHealth, through its Fistula Care Project and with funding from the United States Agency for International Development (USAID), the UK Department for International Development (DFID), and the Bill & Melinda Gates Foundation, works on fistula prevention and treatment in 11 countries, mainly in Africa. In 2006, the World Health Organization developed guidelines for obstetric fistula clinical management and program development to guide comprehensive country responses to fistula. 
In February 2008, the General Assembly for the first time adopted a resolution on “supporting efforts to end obstetric fistula,” and called on states, the United Nations, and international financial institutions, as well as civil society organizations, to support efforts to address fistula. The resolution also requested the UN Secretary-General to report to the General Assembly on the implementation of the resolution. In August 2008, the Secretary-General presented a report detailing efforts to address fistula at the national, regional, and international levels, and recommendations to intensify efforts to end fistula. 
Key Data on Maternal Health and Fistula in Kenya 
Kenya’s maternal mortality ratio, according to the 2008-09 Kenya Demographic and Health Survey, is 488 maternal deaths per 100,000 live births. Maternal deaths represent 15 percent of all deaths to women of reproductive age (15-49 years). Between 294,000 and 441,000 Kenyan women and girls suffer from maternal morbidities.The majority of deaths are due to direct obstetric complications, including hemorrhage, sepsis, eclampsia, and obstructed labor, or to unsafe abortion. Unsafe abortion alone is thought to cause at least a third of all maternal deaths. The government had set targets of having the MMR at 230 by 2005, and 170 by the end of 2010. 
Although there has been some increase in contraceptive use in Kenya, the unmet need is still high, with wide regional variations. Less than half—46 percent—of married women are using some method of family planning, and only 39 percent are using modern methods. The unmet need is higher for women in rural areas.The total fertility rate has slightly reduced from 4.9 children per woman in 2003 to 4.6 in 2008 according to the current Kenya Demographic and Health Survey. There are wide differentials by region and education status. The total fertility rate for women in rural areas (5.2 births) is almost double that of women in urban areas (2.9 births), while that for women with at least some secondary education is 3.1, compared to 6.7 for women with no education. These statistics point to gaps in the provision of family planning education and services to illiterate and rural women (discussed in more detail below).
About 92 percent of women receive some antenatal care, though take-up of antenatal care is less likely in rural areas. Only 47 percent of pregnant women receive the recommended four or more antenatal visits (while only 15 percent visit within the first trimester), a decline from 52 percent in the 2003 KDHS. Most deliveries take place at home: only 44 percent of women deliver with a skilled birth attendant and 43 percent of such deliveries take place in a health facility. Traditional birth attendants assist in 28 percent of home deliveries. 
In 2004, the Ministry of Health and UNFPA conducted a needs assessment of obstetric fistula in Kenya, marking the first major step taken by the government to address obstetric fistula. The 2004 research indicated that fistula affects approximately 3,000 women and girls every year (calculated at the rate of one to two cases per 1,000 deliveries). This needs assessment estimated that there is a backlog of up to 300,000 untreated fistula cases. Doubts exist about these estimates; some experts think that the prevalence could be higher while others argue that some progress has been made both in terms of repairing existing cases and in improving access to maternity care. Therefore the prevalence could be lower. 
Relevant Policies 
To its credit, the Kenyan government has taken positive steps to address maternal mortality and morbidity by developing various strategies, policies, and guidelines to address women’s reproductive and maternal health. Few of these expressly address obstetric fistula, however.
The strategies, policies, and guidelines most relevant to fistula are described in detail. They include several on reproductive health (the National Reproductive Health Strategy and the National Reproductive Health Policy); family planning (the Family Planning Guidelines for Service Providers); adolescent health (the Adolescent Reproductive Health and Development Policy and the National Guidelines for Provision of Youth-Friendly Services); and on reconfiguring health care delivery services to better serve poor and rural communities (including the National Health Sector Strategic Plan, the Kenya Essential Package for Health, the Community Strategy, and the Community Midwifery Approach).
While there is no national strategy on fistula, in 2006 the Ministry of Health did issue the “Kenya National Obstetric Fistulae Training Curriculum for Health Care Workers.” The curriculum is a helpful tool for doctors, nurses, and other medical and social workers involved in managing fistula, but is far from a national policy or strategy.
Two of the efforts to revamp health care delivery in Kenya that are most relevant to fistula are the Community Strategy and the Community Midwifery Approach. Both have experienced serious delays and difficulties in implementation; if these are overcome, the strategies could reduce many of the barriers to information and to effective care which contribute to fistula’s prevalence. 
Community Strategy  
In 2006 the Ministry of Health launched the Community Strategy, which has been lauded as a viable approach to improve service delivery at the lowest levels of the health care system (community level or level one) that serve mainly rural and poor communities. It envisages building the capacity of households not only to demand services from all health providers, but to know and progressively realize their rights to equitable, good quality health care. The strategy aims, among other things, to reduce child and maternal deaths.Three categories of services should be provided at the community level: disease prevention and control to reduce morbidity, disability and mortality; hygiene and environmental sanitation; and family health services to expand family planning, maternal, child, and youth services. There are two categories of personnel promoting health at the community level: community health workers (CHWs) who work on a volunteer basis, and community health extension workers (CHEWs) who are paid government employees and supervise CHWs.One focus area in the Community Strategy is to address challenges related to decision-making for maternity care, which contribute to delay in seeking skilled care in case of complications. Many Kenyan women and girls have these decisions made for them by husbands or mothers-in-law, or other relatives. This occurs for several reasons, including the low status of women in society, poverty, and illiteracy, as demonstrated by Kenyan health survey work. Part of the Strategy includes educating men about safe motherhood, and training women to speak out about their needs, components which are not currently being fulfilled. Approaches have been insufficiently sensitive to gender power differentials, according to those who have evaluated outcomes thus far. 
Physical and Psychological Consequences 
Without surgical repair, the physical consequences of fistula are severe, and can include a fetid odor, frequent pelvic or urinary infections, painful genital ulcerations, burning of thighs from the constant wetness, infertility, nerve damage to the legs, and sometimes early mortality. Many women interviewed by Human Rights Watch complained of difficulty walking because the skin on their thighs stung so intensely. Many women suffering from obstetric fistula limit their intake of water and food because they do not want to leak. This can lead to dehydration and malnutrition. The majority of women and girls we interviewed who were married or in sexual relationships complained of pain and discomfort during sex.
Fistula has a huge psychological impact on women and girls, sometimes leading to depression and suicide. Most women we interviewed described feelings of hopelessness, self-hatred, guilt, and sadness, especially because they are stigmatized and think their condition is untreatable. One woman told us, “You are always sad because every time you are washing clothes, you stain everything and you smell.” Amolo A. described how hopeless she felt before she had successful fistula surgery in 2007: “I was raped, the baby was dead, I was leaking urine and I couldn’t be treated. I felt so hopeless. My life was just useless. I was only 19. My age mates were getting married, and moving on with their lives and I was an outcast…. I was just a burden to everyone.”
Social Consequences
Women and girls living with fistula are often ostracized largely because of the foul odor they produce; almost all women and girls we interviewed said they have experienced stigma due to their odor. Nyasuguta J. told us, “My cousin is so stigmatized. They say ‘she is just feces’ and that she should not go near visitors. Her brothers disowned her. When they see her approaching they say ‘the one with feces has returned.’”Another woman told us, “I confided in a friend once.… She insulted me and ridiculed me.… She called me a mobile pit latrine.” Awino D. said, “People laugh at me saying I am urinating everywhere. They even sang about me in a circumcision song saying ‘someone’s wife urinates on the mattress.’ I asked my husband ‘how come your friends are ridiculing me?’”
Fistula is more stigmatized when, due to misinformation, it is linked to other taboo conditions such as HIV/AIDS, abortion, and infertility. Wangui K. told us, “People … say ‘she has been aborting. Why can’t the husband chase her and marry another woman who can give birth?’” Muthoni M., who is living with HIV and fistula, was abused by her family and abandoned by her husband. She said:
When I went home, he saw my condition and left home. He said it was my problem…. The mother wants him to marry another woman. I am HIV positive. That’s why they despise me more.... I don’t know what I will do when I go back home because I can’t work. I think I will go back to my parents.... I was so mistreated I thought of killing myself. You know this is a bad combination. They say even if I go to Nairobi I won’t get better, I will die.
Fistula survivors are also thought by some to be bewitched or cursed, or may be accused of being promiscuous. Women and girls with fistula are often abused, beaten, abandoned, and divorced by their husbands or are isolated in their homes or shacks outside their homes. Rose Odeny, a nurse at Migori District Hospital who works with community midwives in the district told us, “Most women [with fistula] in Migori have been sent away from their [marital] homes. I find most of them at their parental home. Even when they are not sent away, the way they are treated makes them to pack and leave.” One woman said her husband beats her because he thinks she is lazy: “He says … ‘fellow women are doing business but you are just sitting at home.’” Awino D., who had just left her abusive husband before our interview, told us,
I stayed with my husband for about five years. There was so much violence…. At home they insulted me that I am filling the toilet and yet I have no child. They said that their son should marry another wife because I am wasting his time…. There was a day he told me as he was beating me, ‘leave so that I can marry again.’ I left him in August 2009. He beat me and I decided I had had enough and went back to my parents.
Fistula often leads to loss of social belonging and association. Many women and girls with fistula lead isolated lives, confining themselves to their homes due to the stigma and shame attached to the illness. A large number of those we interviewed did not go to church, the market, or other social places. For example, Fatuma H. told us, “When you have this problem you have a lot of worries. You don’t have a lot of comfort. You can’t mix freely with other people. You feel guilty to mix with them. You fear the thing [the rugs used to keep dry] will come out and embarrass you. You can’t even go to church.” About five of the girls we interviewed said they would have wanted to return to school after giving birth, but fistula made it impossible.
Economic Consequences
Fistula places a huge financial burden on poor families. Frequent infections mean women and girls regularly need medical attention. Women also told us that they need petroleum jelly to soothe the burning on their thighs because they cannot afford regular medical care for this. Almost all the women we spoke to said they could not afford to buy sanitary pads and instead used rugs and pieces of old clothes to control the constant trickle of urine and feces. It is also expensive to keep the rugs clean. Women told us that they needed to bathe, change, and wash their rugs and clothes several times a day to stay clean. For this, they need extra supply of soap, which is expensive. Gesare J. told us, “It is expensive to have this problem. At night, I have to keep a basin with Omo [washing powder] and water so that I use it and then pour it in the morning, otherwise the whole house will smell. It is expensive to keep yourself clean, you need to bathe and wash clothes all the time. You need Vaseline [petroleum jelly] to apply to the thighs. It is really hard.”
Women and girls with fistula may also lose property when they are divorced or chased away by their husbands. All the women and girls we interviewed who had left or been chased away by their husbands told us they left with no share of the family property. Nyakiriro C. told us, “When I got the problem, my husband told me to go back to my mother.… I left with no property. He sold the land and the livestock after I left." Another one told us, “I left home with nothing. We did not have much but I did not get my share of [the property].”
Fistula decreases women’s and girls’ abilities to farm or do other economic activities. Although some women told us that they were able to work on their farms despite the pain and discomfort they suffered, others said they were not able to. Some lose jobs or are denied work when employers discover that they have fistula. For example, Nyaboke H. told us,
My husband chased me away when I got this problem [fistula]. He used to beat me a lot. When I went back to my parents, my sister-in-law also became abusive saying she did not want a dirty smelly person in the home. I left, went to a nearby town, and rented a house. I started doing casual jobs like washing clothes and fetching water, but whenever it was discovered that I had a problem of [controlling] urine, I was chased away. Before long, everybody knew about my problem and I stopped getting work. I used to lock myself in the house and cry the whole night, and sleep hungry.
Other women quit their jobs out of shame. Beatrice N. told us, “I felt bad. I felt like keeping to myself. I stopped going to church. I stopped my cleaning job at Maseno University and stayed at home because I felt ashamed.” Because of the shame and guilt women feel as a result of having fistula, they are reluctant to look for work or ask for financial support from their husbands and other family members.
The Right to Information
Information is a key aspect of the right to health and is critical to women’s reproductive health. The Committee on Economic, Social and Cultural Rights notes that the obligation to fulfill the right to health requires the state to promote health by undertaking research, disseminating information on harmful traditional practices and availability of services, training health providers to respond to the specific needs of vulnerable or marginalized groups, and supporting people to make informed choices about their health. The CEDAW Committee has called on states parties to take steps under the right to health, in particular to “prioritize the prevention of unwanted pregnancy through family planning and sex education and reduce maternal mortality rates through safe motherhood services and prenatal assistance.” The Convention on the Rights of Persons with Disabilities requires states to provide “access to age-appropriate information, reproductive and family planning education.”
The CRC provides for the child’s right to “seek, receive and impart information of all kinds” and requires states to ensure access to child-friendly information about preventive and health-promoting behavior, and to abolish harmful traditional practices such as early marriage and female genital mutilation. The African Charter recognizes that every individual has “the right to receive information” and “the right to education.” The Maputo Protocol specifically includes “the right to have family planning education” and further obligates governments to “provide adequate, affordable and accessible health services, including information, education and communication program to women especially those in rural areas.” The Committee on Economic, Social and Cultural Rights recognized that the right to health includes the right of access to information and health-related education. The particular needs of women in relation to access to health-related information have also been highlighted by the CEDAW Committee and the UN Special Rapporteur on Health, who has stated that one of the factors that make women more vulnerable to ill-health is a lack of access to information.
Right to Equality and Non-Discrimination
Human rights law and standards guarantee women the right to equality and non-discrimination. CEDAW is the treaty that sets out most comprehensively the areas in which governments should be working to eliminate discrimination against women, and in article 12 specifically addresses the area of health. Under CEDAW states parties are required to “eliminate discrimination against women in the field of health care in order to ensure, on a basis of equality of men and women, access to health care services, including those related to reproductive health.” The Maputo Protocol also calls upon states to reform laws and practices that discriminate against women, while the Convention on the Rights of the Child guarantees children the right to be free from discrimination. Under the principle of non-discrimination, adolescents should enjoy the same rights to reproductive health services as adults, as consistent with their evolving capacities.
Because only women require health care services for pregnancy and childbirth, states are under obligation to take special measures to make such services available and accessible, while ensuring that they are acceptable and of adequate quality. Failure to make efforts to do so is a form of discrimination. Certain groups of women face not only gender discrimination, but experience discrimination due to their economic status, geographic location, and age. Under article 14 of the CEDAW, governments must make special efforts to ensure that women in rural communities are not disadvantaged, particularly regarding “access to adequate health care facilities, including information, counseling and services in family planning.”
The Right to a Remedy
Regional and international treaties establish the basic right of individuals to an effective remedy when their human rights have been violated. The Committee on Economic, Social and Cultural Rights has recognized the rights of victims of violations of the right to health to access judicial or other remedies and adequate reparation in “the form of restitution, compensation, satisfaction or guarantees of non-repetition." Likewise, the Maputo Protocol specifically recognizes women’s right to redress, requiring states to “provide for appropriate remedies to any woman whose rights … have been violated … [and] ensure that such remedies are determined by competent judicial, administrative or legislative authorities, or by any other competent authority provided for by law.” The Human Rights Committee has emphasized that states must ensure “accessible and effective remedies” for human rights violations and to take into account “the special vulnerability of certain categories of person,” and further noted that “a failure by a State Party to investigate allegations of violations could in and of itself give rise to a separate breach of the Covenant (ICCPR).”
The right to a remedy in the context of the right to health is closely linked to accountability, which is a key element in ensuring the right to health and in the enjoyment of all human rights. The UN Special Rapporteur on the right to health has stated that “without accountability, human rights can become no more than window-dressing.” Accountability has been called the “raison d’être of a rights-based approach.” It has two main components: redressing past grievances and correcting systemic failures. Accountability is not about blame and punishment, but it is a process that helps to identify what works so it can be repeated and what does not so it can be revised. Where mistakes have been made, accountability requires redress. It is also concerned with ensuring that health systems are improving, and the right to the highest attainable standard of health is being progressively realized for all, including disadvantaged individuals, communities, and populations.
Sexuality Education
The risk of obstetric fistula often begins when young girls get pregnant or marry early, before their bodies are able to safely sustain a pregnancy. One of the factors leading to early pregnancy and childbearing is the lack of accurate reproductive health knowledge. We spoke to some girls who displayed a lack of basic knowledge on sexuality while others told us that they did not have this knowledge before becoming pregnant. Ten of the girls aged 18 years and below whom we interviewed told us they got pregnant from their first sexual encounter. Seven of them said they had unprotected sex but thought they would not get pregnant because it was their first time, two said it was because they had irregular menstrual periods, and the other because her boyfriend told her she would not fall pregnant. For example, 17-year-old Mueni M. who became pregnant in 2008 while in primary school told us, “I did not know I would get pregnant because it was the first time. I did not know anything about condoms.” She also told us that they had not received any sexuality education in school. Kemunto S. also became pregnant while in primary school. She said, “I got pregnant when I was 16 years old. I was in standard seven and thought because my periods did not come every month I would not fall pregnant. I did not know anything about contraceptives although I had heard people talk about condoms.”
Unease surrounds the topic of sexuality education in Kenya, with some parents and religious leaders opposing the provision of such education because, they say, it would lead to promiscuity. For example, a primary school teacher told Human Rights Watch, “Parents don’t want it [sexuality education] sometimes. They say children are taught how to be promiscuous. Another teacher was telling me the other day that parents in his school say we are teaching their children how to have sex.” Another teacher, Stella Kinaki said, “We have parents who say what we are teaching [sexuality education] is spoiling their children. Sometimes we go for meetings and some teachers are also not comfortable with some of the things we are supposed to teach.” Another one told us, “It is not just pupils who need sexuality education. Parents also need to be told why it is important.”
The government has made efforts to introduce life skills training, which includes sexuality education, in schools. In January 2008, the government asked upper primary and secondaryschools to teach life skills and called for the provision of adolescent/youth-friendly reproductive health services. In 2009, the Ministry of Public Health and Sanitation and the Ministry of Education launched a National School Health Policy and implementation guidelines that address sexuality issues. Experts say there are gaps in implementing this policy. Teachers interviewed by Human Rights Watch told us that lack of time, because sexuality education is not part of the school syllabus and therefore not a priority subject, is the main hindrance to it being taught in schools. A headmaster at a primary school told us, “We appreciate that this is an important issue for children to learn, but unless we make it part of the syllabus, time will always be a barrier.”
Family Planning Information
Family planning education, information, and services are critical to women’s wellbeing and to their reproductive and maternal health. Adequate information about the advantages of family planning and contraception methods, as well as access to such services, is important for reducing maternal deaths and morbidities such as obstetric fistula because it helps women to have planned pregnancies. According to the 2008-09 Kenya Demographic Health Survey, 43 percent of most recent births were not planned, underscoring the need for family planning education and services.
Our interviews show that access to accurate and comprehensive family planning information for some of the rural women and girls is a challenge. About half of the women we spoke to said they had no knowledge of family planning and contraception before they got pregnant and an equal number told us that they had learned more about family planning during antenatal care, and none of the women said they received family planning information from a community health worker.Misinformation is a problem as well as lack of information. Seventeen-year-old Monica J. told us, “My boyfriend told me the withdrawal method was best for us because we were not married. I don’t know about any other method.”
Our research shows that there is need to take deliberate steps to educate rural, young, and illiterate women about the importance of family planning and the available methods. The government is aware of the information deficit among poor, rural, and uneducated women.
The Community Strategy provides an opportunity to reach rural women with family planning information. One of the activities in the Community Strategy is provision of family planning information and services. Community health and extension workers are required to create awareness on the importance of family planning and services available, but none of the women and girls we interviewed had received such information from these workers. Current available data from the 2008-09 KDHS indicates that a mere 5 percent of women who are not using any family planning method are being reached by field workers to discuss family planning issues, and only 9 percent who visited health facilities in the 12 months before the survey discussed issues of family planning with the health facility staff. This implies that many opportunities are lost to educate potential users on the benefits of family planning.
Fistula repair camps also present an opportunity to talk to women and girls about family planning, but this does not always happen. Three nurses, out of the five we interviewed working in fistula wards, told us that they do not talk to women about family planning. For example, one of the nurses, a trainer on post-operative care for fistula patients, said, “We do not give them [women and girls] any information on family planning because we do not allow for sexual activity before six months; we tell them to abstain. Also, many do not have children.” A nurse at Jamaa Hospital told us that their policy—they are a Catholic mission hospital—does not allow them to talk to women about family planning. This assertion was confirmed by the hospital administrator.
Under the focused antenatal care program, women and girls should be given post-partum family planning information, which is important for making decisions about the healthy spacing of pregnancies, the mother’s risk of unintended pregnancy after birth, and specific methods of post-partum family planning such as lactational amenorrhea. A study by Population Council found that providers failed to provide this information consistently. In addition, post-natal care attendance is very low in Kenya, further limiting opportunities for provision of family planning information. The current Demographic and Health Survey shows that 53 percent of women did not receive postnatal care for their most recent birth, particularly poor, illiterate, and rural women.
Information on the Need for Facility Deliveries
As noted earlier, a key government priority in improving maternal health is increasing access to skilled attendance during pregnancy, delivery, and after delivery. Women and girls should be told about the importance of facility delivery during antenatal care visits and in communities through community health and extension workers, but this is not always the case. Although only ten women out of the 40 we interviewed who said they attended antenatal care said they were not given this information, there is need to ensure that all women understand the importance of delivering in a medical facility.
Gaps also exist in giving women information about potential complications during childbirth, as discussed in more detail below. It is important that at antenatal care women are told about possible complications that could arise, and that these can happen with any pregnancy. We spoke to four women who said they delivered at home because they had had prior uncomplicated births at home. One told us, “I had four deliveries at home and they were very easy and I normally deliver after a very short while after experiencing labor. I delivered with assistance from my husband's grandmother but this time I don’t know what went wrong.”
Over half of all births in Kenya are categorized as high risk births, that is, births to women with three births or more, to those older than 34 years, or to those younger than 18 years. These statistics underscore the need for the government to scale up information to women and communities on the value of women giving birth in health facilities. Additionally, it is important for the government to monitor the kind of information that women are given during antenatal care. Human Rights Watch interviews with nine nurses, three from dispensaries and six from hospitals, revealed that there were no oversight mechanisms at their facilities to ensure that health providers are giving women the required information during antenatal and postnatal visits. 
Information on What Fistula Is and Treatment Availabilityhttp://4.bp.blogspot.com/_uqHQrSVkLdk/S9vYJ8mX2KI/AAAAAAAAAPI/0Xm7w3N1fv0/s1600/fistulas.gif
Almost all the women and girls we interviewed had never heard about fistula before they developed it, and many were surprised to come to the hospital and meet so many women seeking fistula treatment. They had thought they were the only ones.
Misinformation about fistula abounds, contributing to delays in seeking treatment. Some women thought that incontinence was normal after delivery, that they got fistula after Cesarean sections, or that the bladder cannot be repaired. An HIV positive woman told us people in her community say she got fistula because she is HIV positive and she believes that because HIV cannot be cured, fistula too cannot.
Some TBAs and religious leaders perpetuate these myths by giving wrong information to women who seek their help. Nyakundi B. lived with fistula for four years because when she told her mother about her condition,
My mum took me to a traditional healer who told her that the doctors left cotton inside me and that’s why I had the problem. They told her they would pray for me and I should go to their church. I went many times and they prayed but nothing happened so I stopped. I just stayed at home.

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