The Hidden Heartbreak: Obstetric Fistula

Imagine being a child bride, no older than 14, sexually inexperienced, married to a much older man, becoming pregnant quickly, and going into labor all by yourself. Isolated from any possible medical help and safe birthing interventions, you labor alone for days on end, screaming in excruciating pain. The fetus gets stuck in your small, too narrow pelvis during this agonizing prolonged and obstructed labor. The severe pressure of the fetal head against your pelvis cuts off the blood supply to the tissues of your vagina and your bladder (and/or frequently your rectum too), causing the tissues to die and a perforation or hole, known as a fistula, to form.

Such is the reality of obstetric fistula, which is now unknown in the United States because of the surgical intervention of Cesarean sections. But in the developing world, access to any kind health care, including obstetrical care, is rare, and fistula is common. As a result, the girl/woman is left with chronic incontinence and the baby is almost always born dead, compounding the tragedy.

Imagine being a child bride, no older than 14, sexually inexperienced, married to a much older man, becoming pregnant quickly, and going into labor all by yourself. Isolated from any possible medical help and safe birthing interventions, you labor alone for days on end, screaming in excruciating pain. The fetus gets stuck in your small, too narrow pelvis during this agonizing prolonged and obstructed labor. The severe pressure of the fetal head against your pelvis cuts off the blood supply to the tissues of your vagina and your bladder (and/or frequently your rectum too), causing the tissues to die and a perforation or hole, known as a fistula, to form.

Such is the reality of obstetric fistula, which is now unknown in the United States because of the surgical intervention of Cesarean sections. But in the developing world, access to any kind health care, including obstetrical care, is rare, and fistula is common. As a result, the girl/woman is left with chronic incontinence and the baby is almost always born dead, compounding the tragedy.

Obstetric fistula affects mostly very young and poor women between the ages of 13 and 20 in Africa, Asia, and the Arab states. The fistula that forms due to the torn tissues allows urine and/or feces to drip uncontrollably. The odor is unmistakable and humiliating, and the woman is usually ostracized by her husband, family, and community, and left to live or die alone and in shame. Left untreated, fistulas can also lead to other chronic medical problems, including ulcerations, kidney disease, nerve damage in the legs, and profound psychological trauma resulting from a woman's loss of status and dignity.

Maternal mortality rates indicate that each year, more than 500,000 women die from complications of pregnancy and childbirth, 99% of them in impoverished developing countries. Like the reasons for maternal mortality, fistula is almost always entirely preventable. At least two million women are living with this condition, and some 50,000 to 10,000 new cases develop every year. The real figures could be much higher. Because of a lack of understanding and social stigma regarding fistula and stillbirth, girls and women often suffer in silence and it is known as "the hidden heartbreak" (PDF).

When a girl/woman can actually travel to a surgical hospital that treats fistula, reconstructive surgery is available to mend the injury. Success rates are high. Two weeks or more of post-operative care and rehabilitation are also needed to ensure a successful outcome. Physical therapy, counseling, and support are important to address the toll of the physical and emotional damage of fistula and facilitate social reintegration. The average cost of fistula treatment that truly transforms the lives of the girls and women is merely $300 U.S. But for the impoverished and powerless girls and women who need fistula repair, living far from medical services, that figure may as well be $3 million.

What can be done to prevent and treat fistula and restore the health and dignity of the women living with its crippling consequences? The persistence of fistula is a signal that health systems are failing to meet the needs of women. Every minute, a woman in the developing world dies from preventable and treatable complications of pregnancy or childbirth. For every woman who needlessly dies, as many as twenty others are harmed by fistula or other injuries of child-bearing. Women need access to funded total quality health care, including a full range of reproductive health care services—which includes family planning and contraceptive care to reduce unintended pregnancies, skilled medical care at all births, and timely emergency obstetrical care for all women and girls who develop complications.

Fistula as a major reproductive health issue for the most marginalized girls and women raises numerous societal infrastructure and priority issues. Issues of safe motherhood practices, as well as a critical shortage of trained health care personnel in the developed world, must continue to be addressed. But the core issues go deeper than that. We see the extreme poverty in Africa that is caused by the economic tactics of the International Monetary Fund, the World Bank, and dominant industrialized countries such as the United States. For the past three centuries, we have witnessed the slave trade, colonial plunder and destruction, and numerous wars and genocide. Now, the current shocking health inequities that trivialize women's lives with AIDS infection rates, unsafe abortion procedures, and the prevalence of fistula, to name only a few, continue to be perpetuated by ignorance and inaction.

We see cultural practices that denigrate women by encouraging poverty, inadequate nutrition, lack of education, denial of medical care, and early marriage. These same girls are forced to bear children before their narrow pelvises are ready. Misguided governments perpetuate sex discrimination and certainly do not sufficiently fund any programs that would enhance women's social power, educational status, and health care needs. We can also never forget our own President George W. Bush, strutting hero of the anti-woman anti-choice movement, for vindictively cutting off $34 million in aid to the UN Population Fund and sacrificing the lives and welfare of the poorest women in the world.

The roots of fistula truly lie in the political, economic, and social determinants that underlie women's poverty, vulnerability, and inequality. Yes, we need more resources for the impoverished women of the world—government policy changes, access to health care for women, and the creation of more staff training programs and more facilities for fistula repair. Preventing, treating, and ending fistula is a basic human right and it can be accomplished.

After all, the last hospital in the United States that treated fistula closed in 1895. Women and girls need never suffer again from fistula's stigma and discrimination. But, first, the world needs to figure out the value of women and why respect and empowerment of women and girls is so fundamental for ending this scourge. It is tragic that this basic concept is taking so long.

Editor's note: For information about traumatic fistula, read Dr. Joseph Ruminjo's post.