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Guest Blog: Rachel’s Journey for Healing
May 20, 2020
Due to extreme bladder injuries sustained during an abdominal hysterectomy, I developed a vesicovaginal fistula tract (and had another one forming)—a devastating and life-altering ailment that has required subsequent surgeries. Upon learning that yet another surgery was likely, I watched a heart-rending documentary entitled A Walk to Beautiful. The film follows the tragic obstetric fistula journeys of five Ethiopian women. As I witnessed their harrowing stories unfold within the wake of my own tragedy, I wept with them, and I wept for them. At one level, I understood their pain, and yet, at the same time, I knew I could never comprehend the full extent of their suffering.
Since I suspect the question — what is obstetric fistula? — has crossed many minds, I am going to explain the term and then paint a picture that captures the typical experiences faced by fistula victims throughout the developing world.
Simply stated, a fistula is a hole. An obstetric fistula is a hole that develops between the vagina and the bladder or between the vagina and the rectum. Such fistulas typically form after a woman faces two or more days of prolonged, obstructed labor. Pressure from the baby being lodged in the birth canal compresses soft tissue against the expectant-mother’s pelvic bones, thereby cutting off the blood supply to this area. Since the lack of blood destroys the tissue separating the urinary tract or rectum from the vagina, a hole develops. The woman, now a victim of obstetric fistula, is left with a constant leak of urine or feces through her vagina.
Although once a threat to all expectant mothers who faced obstructed labor, obstetric fistula has become an injury that primarily plagues women in the “bottom billion” of the world’s population. With the rise of medical, scientific, and technological advances throughout the twentieth century, advances that resulted in ready access to regular and emergency obstetric care in affluent countries, the development of obstetric fistulas has essentially disappeared in such areas (although vesicovaginal fistulas occasionally develop as a result of gynecological surgical complications, as in my situation). And yet, according to the World Health Organization, more than two million women worldwide — the poor, the voiceless, the overlooked, and the forgotten — continue to suffer from obstetric fistula, with approximately 50,000 to 100,000 additional women being injured each year. Factors such as poverty, inaccessible obstetric care, lack of education and information, home births, female genital mutilation, child marriage, adolescent pregnancy, and gender inequality contribute to the prevalent and ongoing role that obstetric fistula plays throughout the developing world.
Today, the typical victim of obstetric fistula is a young woman living in a poor, rural village in sub-Saharan Africa or Asia. In many cases, these women, while still children themselves, have been forced into an early marriage, often with a man they barely know. Since reproduction is considered a woman’s primary role within cultures where obstetric fistula prevails, many girls become expectant mothers well before their pelvic region has finished developing and maturing. In such cases, labor often becomes obstructed — when the mother’s pelvic region is too small to deliver her baby vaginally, its head becomes lodged in the birth canal. Women in this situation are left to endure agonizing pain, often all alone, for days on end. Rather than being shown compassion, they are ridiculed for not being able to do something that should come naturally to them. Physical relief often emerges in the form of tragedy — a decomposing fetus eventually makes its way through the birth canal. The fatigued mother delivers a rotting infant. Utter despair ensues. Many women in this circumstance will never have the opportunity to become a mother again — the only role they are allowed to assume within their society. Motherhood is everything. Without a child, a woman believes she is nothing.
For many victims of obstructed labor, the anguish of losing a child is followed by further devastation. As explained earlier, pressure from the baby pressing against the mother’s pelvic bones often damages tissue within the birth canal, and an obstetric fistula — typically a vesicovaginal fistula — forms. Shortly following delivery, then, a steady stream of urine begins to pour down the woman’s legs, day and night. She is confused. She is overwhelmed. She does not know how or why this is happening. No one can offer her an explanation. She just knows that she has no reprieve, and thus no hope. No joy. No life.
Although the fistula victim’s natural inclination is to hide her “deplorable problem” from others, she has no way of doing so. Living in a hot and humid climate means that her stench is particularly foul. Additionally, she likely lacks access to undergarments or sanitary supplies. Nor does she have the resources needed to properly clean and care for herself. Painful sores eventually develop. Constant infections ensue. People declare her filthy, dirty, and disgusting. Women suffering under these circumstances are left to live alone, crouching in the dirt as a constant flow of urine streams down their legs. Many wish for death.
Vesicovaginal fistulas serve as a gateway to ostracization. Rather than encountering love, compassion, and support in the face of such a tragic injury, fistula victims are often despised by their communities — family and friends reject them, blame them for their ailment, and thrust them from out of their midst. In many cases, a fistula victim’s physical uncleanliness is interpreted as a sign of moral uncleanliness. The failures of the human body are deemed the failures of the woman’s soul. Indeed, it is not uncommon for fistula victims to be accused of adultery. They are said to be bearers of venereal disease. They are dubbed whores. They are viewed as wicked and defiled women. Members of the community interpret the woman’s ongoing leakage as a symbol of God’s judgment, as a mark of a divine curse and as a punishment for hidden sin. Abandoned by their husbands, cast out by their families, and left with feelings of intense shame, these women become solitary figures, weeping over the infant they never got to hold; weeping over an injury they do not understand; weeping over the lives they will never get to live. Similar to countless “unclean” women throughout time, the silence of the modern fistula victim is deafening. These are devastated women in desperate need of support. They need people who can see them for who they really are: victims in need of love, compassion, and proper physical and emotional care. They are human beings who deserve to experience healing. They are women who should be able to have hope in their futures.
The most fortunate fistula victims become fistula pilgrims. If they are fortuitous enough to hear about a hospital that can stop their leakage, they make long journeys — lasting days, weeks, months, or even years — until they find the answers they have been seeking. Fistula hospitals, funded by organizations like the Worldwide Fistula Fund, offer the healing these women so desperately need. Surgery, and follow-up care, restore life. These hospitals offer hope. They provide peace. They give the fistula victim a future.
Over the course of the past year, my own “fistula pilgrimage” has left me feeling physically and emotionally exhausted. As I prepare for my next (and I hope final) surgery, I often feel alone, lost in a world where no one seems to understand the constant devastation of a fistula leak and the endless complications that come with it. I sometimes sob as I feel the effects of my broken bladder, wondering if I will ever be able to lead a normal life again. I ache for healing and for wholeness. The Worldwide Fistula Fund has become a powerful reminder that I am not alone in my distress. Millions of women, who lack access to the medical care and conveniences that I benefit from, suffer with me as well as far beyond me. They, too, deserve to be healed. My hope and prayer is that knowledge of my difficult journey will increase awareness of their silent suffering.
On this International Fistula Day, I invite all to join me in remembering and assisting my fistula sisters on their journeys towards healing and restoration.