Sorrow Beyond Childbirth

Sorrow beyond

Childbirth O b stetric F ist u l a in the D evelo p ing W orld

by L. LEWIS WALL, M.D.

The book of Genesis famously declares that “in sorrow” women shall bring forth children.This is still a sadly accurate characterization of many women’s childbirth experiences, particularly in poor countries. Each year over half a million young girls and women die giving birth, but only 1 percent of these deaths occur among the world’s affluent populations.

For each one who dies, several dozen more will sustain lifealtering injuries from labor and delivery. This ongoing obstetrical carnage goes largely unnoticed in the West.

Among the worst complications a woman can develop is obstructed labor, where her baby will not fit through her birth canal. Obstructed labor is an obstetrical impasse.The irresistible force of the uterine contractions trying to push the baby

out confronts the mother’s unyielding bony pelvis, which will not permit the process to go forward. As labor continues, the baby is forced deeper into the pelvis, where it becomes tightly wedged against the soft tissues of its mother’s bladder and vagina, compressing them against her pelvic bones.

In the West we solve this problem by cesarean delivery, making a new passageway for delivery through an incision in the abdomen and uterus, thereby bypassing the obstruction.

In most parts of sub-Saharan Africa, however, lifesaving obstetric services of this kind are almost nonexistent (the C-section rate in West Africa is 1.3 percent, in the United States nearly 30 percent), and so the poor mother and her child remain suspended in agony, desperately waiting for a deliverance that

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Previous page: When fistula patients find their way to get help — like these women waiting to be screened at Danja Fistula Center — they discover relief and joy, not only from having hope of recovery for the first time, but also from knowing they are not alone in their misery. Photo courtesy of Worldwide Fistula Fund. never comes, until the relentless, crushing pressure of labor asphyxiates the child.

The death of her unborn child will not end this woman’s sorrow, however. Her womb will continue to attempt to expel the body of the now lifeless child. In a day or so, as the fetus starts to decay, it will eventually soften enough so that it can slide past the obstruction in its mother’s pelvis. Exhausted after three or four days of continuous labor — sometimes longer — she will deliver her stillborn child, but rather than finding blessed relief, too often she finds instead that her ordeal is only just beginning.

If she does not die from hemorrhage or infection or from physical exhaustion, the girl or woman who survives obstructed labor may soon discover that she has no urinary control.

The prolonged pressure of the baby’s head prevents her from urinating during labor. The agony of three or four days of urinary retention is added to the agony of a labor that will not end, and all the while her painfully distended bladder is being crushed by the fetal skull pressed against it. Eventually the entrapped tissues lose their blood supply and, starved of oxygen like the dying fetus, they also die, leaving behind a fistula.

A fistula is a hole between the bladder and the vagina.

Once a bladder has a fistula it can no longer store urine.

Every drop of urine produced by the kidneys and carried down to the bladder simply runs out through this hole. The woman with a fistula is incontinent day and night. As soon as

the urine reaches her bladder, it runs out through her vagina, down her legs, and onto the floor. No matter how hard she tries, she can never stay clean. Before long the skin on her bottom breaks down, encrusted in urine salts and infected.

In many cases the injury involves the rectum, leading to a constant loss of feces. The most unfortunate of all have an injury to both the bladder and the rectum, resulting in continuous urinary and fecal incontinence. The constant smell of waste surrounds her, driving her friends away. She is unattractive to her husband and a burden to her family who are faced with the difficult practical question of how to deal with this hideous problem.

Because these injuries will not heal without surgery — and because lack of access to surgical services (cesarean section) is one of the main reasons the problem developed in the first place — no good solutions are readily available. The family often resolves the problem by sending her away to fend for herself as best she can. Perhaps they confine her to a small hut on the edge of the family property, where she sits day after day, stinking, alone and shunned by her community, friendless and outcast, living in sorrow. Many of these girls are only 13 or 14 years of age, old enough to become pregnant but not physically mature enough to deliver a child safely.

For all practical purposes their lives are over while they are still children themselves.

This problem is deeply embedded within the socioeco-

Left: The award-winning documentary A Walk to Beautiful features Ayehu, 25, who, before finding healing at the Fistula Hospital in Addis Ababa, is banished to a makeshift shack behind her mother’s house, shunned by siblings and neighbors alike. © Engel Entertainment. Right: After successful surgery to repair their fistulas, three patients at Danja Fistula Center find their smiles returning. Photo courtesy of Worldwide Fistula Fund

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nomic matrix of the countries in which fistulas are prevalent, but the women themselves are blameless. Their suffering is not due to personal misbehavior or a “bad choice,” rather it is simply the result of reproductive misadventure, the misfortune of having been born female in a society where women are not valued equally with men, and living in situations where they have little or no control over the circumstances in which they become pregnant. Several million women live with obstetric fistulas in Africa and South Asia today, and tens of thousands of new cases occur every year. Since fistulas are not by themselves fatal, a woman may live for decades once she has been injured in this way.The cumulative human suffering that this entails is almost incalculable.

These circumstances bring to mind the passage in the gospel of Mark that tells how Jesus healed a woman with a chronic menstrual discharge. She crept up behind him in a crowd, touched his cloak, and was healed. All careful readers of the New Testament are familiar with this passage, since it is found not only in Mark but also in Matthew (9:20-23) and Luke (8:43-48). Unfortunately, the depths of meaning found in this passage are rarely explored.While this woman’s chronic menstrual bleeding was certainly unpleasant, its true importance lies in the fact that she was infertile. Regular cyclic menstrual bleeding is the outward sign of ovulation, a prerequisite for conception. Since Mark tells us that her discharge of blood has lasted for 12 years, we can be assured that she hasn’t been pregnant during this time. Something was wrong with her ability to conceive, and it is this that is the cause of her anguish and distress.

Women in the biblical world were expected to be wives and mothers. Motherhood was their “reason for being,” the role that gave purpose to their lives.This woman’s burden was not simply that she had irregular menstruation; rather, she was cut off from the one thing that gave her meaningful status in society. The reason that she had “endured much under many physicians and had spent all that she had” was not that she had heavy and prolonged menstrual periods; rather, she was desperate because she could not have a child. Given the society in which she lived, infertility would have been cause for outright panic.Without any children, a woman would be looking into the abyss of a sorrowful, lonely, and meaningless future.

The second devastating consequence of this woman’s condition was that she was always ritually unclean.The book of Leviticus (15:19-24) describes the ritual status of menstruating women in detail and the requirements they had to meet in order to return to purity. To be sure, many — perhaps most — women accepted the laws of ritual purity laid down in the Torah, abided by them scrupulously, and found fulfillment in living righteous and properly regulated religious lives.

But when menstrual bleeding became irregular and unpre-

A vision in need of a dvoc a cy The US government spends billions of dollars each year on armaments and military assistance to foreign states in its “war on terror,” yet the standing of our country in the eyes of the world is at low ebb. We propose a long-term Campaign to Eradicate Fistula funded by the US government through an innovative medical mission program. For less than 3 percent of what we have committed to the fight against AIDS through the President’s Emergency Plan for AIDS Relief (PEPFAR), we could build the infrastructure throughout sub-Saharan Africa necessary to end the fistula epidemic. This plan would replicate the model of the Danja Fistula Center in high-prevalence fistula areas, and staff these centers with volunteer doctors and nurses from the United States who enlist in a Fistula Corps (modeled after the Peace Corps).

Partnering with African governments and local African medical and nursing staff, these centers would provide focused care for women with fistulas and related childbirth injuries, while at the same time developing programs for the prevention of fistulas by improving the monitoring of labor within local communities and establishing clear strategies to detect abnormal labor and move women to centers for emergency obstetric care before labor becomes prolonged and a fistula develops.

dictable, these purity restrictions became progressively more constrictive and burdensome. To have had nearly constant menstrual bleeding for 12 years in a society where rules of purity were rigorously enforced would have been truly awful.

Such a woman would be constantly unclean.Those who knew about her condition would not welcome her. She could not participate in religious services or religious activities. An accident of menstrual hygiene would disrupt her household, at great inconvenience to those living with her.The collective burden of 12 years of such uncleanness would have become overwhelming, and the woman of Mark 5 must have wondered why such a thing had happened to her. How could she get pregnant anyway? If her husband had been a righteous man, he would not have come near her due to her constant impurity — so the likelihood of being permanently childless would have been almost certain.

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These are the reasons the woman in the crowd was so desperate to find Jesus. It also explains why she didn’t explain her problem to him face-to-face and ask him for his healing touch. Such an action would have been both embarrassing and ritually dangerous. How much simpler just to sneak up and grab hold of his clothes for a moment, making off with just enough of his holy healing power to cure her ailment.

The woman is successful. She manages to touch Jesus, and her affliction is cured. But imagine her horror when, having stealthily accomplished her task and melted back into the crowd, Jesus suddenly turns around and asks, “Who touched me?”The reason Mark says “she came in fear and trembling”

was that she had just done an unconscionable thing. She had willfully approached a holy person, in the full flood of her impurity, thereby rendering him unclean as well. To be exposed in public in the midst of this shameful and ritually defiling act would have been dreadful in the extreme.

But Jesus overturned the expectations produced by her shocking act. Instead of castigating her and humiliating her in public, Jesus looked her in the eyes. He probably smiled at her.You can even imagine him touching her himself, for physically taking hold of her in these circumstances would have been typical of Jesus, deliberately violating a ritual restriction in order to perform an act of healing and compassion.

Laughter under the Mango Tree

years of affiliation with this issue, I can say with confidence that I have taken away much more than I have ever given.

Fistula victims are human beings whose medical condition and its consequences leave them stripped of any pretense.

The physical, social, psychological, and spiritual suffering they have endured is a refining fire that leaves behind the true essence of their personhood, which, amazingly, they freely offer up as a gift. More than perhaps any other human beings, they have every reason to withdraw and be self-protective.When I show up in their remote towns, an aging white guy in a white lab coat, I have less in common with these women than a Martian might with people he met in Times Square. And yet, with a smile and a touch, the barriers are gone, and the women reach across huge barriers of culture, language, economics, and education to offer their friendship.

As a qualified surgeon among desperate individuals who have a surgical condition that very few surgeons can fix, you might think that this friendship is conditional, a way to ensure that the lady gets the care she needs. But I cannot count the times that women have endured surgery that ultimately failed, only to keep smiling and welcoming me into their world.

Still leaving a trail of urine behind them, they have run up as I walked by to kiss my shoes, just because I chose to connect — to at least try to help them. While an act likes this makes me feel particularly rotten in view of my failure as a surgeon, it is emblematic of the depth of character that these women show.

I look at fistula patients as little mirrors of the character of God.The women I have cared for have taught me much about grace, courage, longsuffering, forgiveness, a creative spirit, unconditional love, and so much about faith. Only God could be the source of forces so strong and so pure.

Over the years, I have dealt with literally hundreds of doctors and nurses who wanted to volunteer and help with

b y S teve A rrowsmit h , M . D .

I first encountered the harsh realities of obstetric fistula while on a short-term medical mission trip to Liberia in 1987, having just finished my training in urology. At 3 a.m. of my second day there, a fistula patient who had an appointment for later that week came into the hospital with abdominal pain.

The general surgeon from the hospital determined, after an exploratory laparotomy, that the pain was from a medical condition. Since we were there, the patient was already asleep, and he had been “saving” the lady until my arrival, we went right ahead and struggled to close a massive fistula defect, neither of us really confident that we knew what we were doing. By some miracle, the lady fully recovered, and the obvious depth of her joy made me want to learn more. This chance encounter led to curiosity about this condition which I had barely heard of before then. My curiosity became a fascination, then an obsession, and eventually, the whole thing grew into something that I can only label as a life calling, the reason that God put me on this earth.

The life I have chosen is easily misunderstood by the folks here at home. Many approach me after hearing me speak at a church or university and gush over all the “adventures” I have had traveling to exotic African places. I repeatedly meet people who marvel at my “commitment” and “sacrificial spirit” — since I spend as much time as I possibly can with fistula patients.Well, I’m sorry, but they just don’t “get it.” In over 20

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“Daughter,” he said to her, using a term of kinship that indicates a familial relationship even though he cannot have been much older than she was herself —“your faith has made you well; go in peace, and be healed of your disease.”

At this sudden reversal of expectations, this restoration and healing, the kingdom of heaven broke forth into the life of this suffering woman. It is a magnificent moment, worthy of wonderment and celebration.

The nameless, unclean woman in the crowd was not a sinner cursed by God because of some moral error on her part.

Neither was she particularly unfortunate just because her life was governed by Jewish ritual law. All societies make

distinctions between the “clean” and the “unclean” (the acceptable and the unacceptable), and physical/mental disorders of various kinds often form the basis for such distinctions. The woman in Mark’s gospel is merely an innocent victim of disordered physiology, as are the millions of women in Africa today who are shunned by their communities because they have a fistula.

They, too, are victims of disordered reproductive physiology, but their shame is deeper, their suffering is more intense, and their need for healing is greater than that of the unclean woman who touched Jesus’ cloak. These women also try to hide themselves in the crowd, but unlike the bleeding woman,

Dr. Arrowsmith with Chris, one of his restored friends in Benin.

ence in my particular area of service has brought me to some very good and some very bad places. I have dined with heads of state, sipped tea with a princess, and been involved in a great human drama where it is still possible to make a difference as an individual. I have also endured armed robbery, illness, fear, and paralyzing doubt. But I have no doubt as to how the balance sheet stands. For every moment spent with a dignitary, and for every moment of struggle, I have thousands of other moments sitting under a mango tree, cherishing the opportunity to just “be” with women with fistula — joking and laughing with them in spite of the worst Satan had to throw at them, and seeing, through their joy, that he has badly lost.

As a grandfather, I have reached a stage in my life where I am much more — and much less — certain of many points of doctrine than I was as a young cowboy missionary surgeon.

I believe deeply that the life God gave me is an eloquent statement of his undeserved grace. I have no wish to convince you readers to put your lives aside and take up fistula surgery. But I am convinced that each of us has a course that God offers, a path where we can know, from day to day, that we are doing the very thing God made us to do. Finding the path often requires some crazy choices. But the rewards are far too precious to lose over concerns for personal security. n

the fistula problem. Many seem desperate to convince all within hearing of the great skills they have to offer sacrificially to the women of Africa.While I understand this need, and probably felt much the same early in my career, I feel a twinge of pain for them. If we get too wrapped up in what we are bringing to the altar, we miss out on what we can take from it.

One of the more profound realizations that came over me early in my time in Africa was that God really does not need any of us to accomplish his purposes. His agenda of redemption will be completed, regardless of whether or not I choose to be a part of it. If I do choose to take part, my reward is that I get to know God better (Isa. 43:10), and this is a gift that no one can take away. My path as a fistula surgeon has involved some financially suicidal choices. And yet I am a profoundly wealthy man. Through the women I serve, God teaches me more and more about himself, about his love for me, his active role in history, and his humility in trusting this precious work to a guy like me.

It has been a wild ride. My journey in attempting obedi-

Steve Arrowsmith is vice president for international program development at the Worldwide Fistula Fund and a urologic surgeon working full time as a consultant in the field of obstetric fistula surgery. He founded the vesicovaginal fistula center at Evangel Hospital in Jos, Plateau State, Nigeria, and served as associate medical director of the Addis Ababa Fistula Hospital in Ethiopia for three years before returning to the United States. He also serves as the vesicovaginal fistula program coordinator for Mercy Ships.

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their stigma is obvious to all those around them.The woman in Mark’s gospel could hide her menstrual shame with a discrete padding of cloth, but a woman with a fistula cannot manage in this way. The constant trickle of urine rapidly saturates whatever absorbent material she can stuff between her thighs, and the odor arising from these urine-soaked rags is both omnipresent and unmistakable to those around her. It is not possible to hide in a crowd; the only option is to flee from the crowd, to live in misery on the margins of society.

In spite of these devastating circumstances, many of these women show remarkable and deeply inspiring resilience in the face of their suffering. Moreover, fistulas can generally be cured and the lives of these women restored with lowtechnology surgical care.There is no more gratifying surgical operation than successful treatment of an obstetric fistula: At one stroke a human life is transfigured, an outcast is restored to social community, and a broken life is made whole again.

Two years ago in Liberia, Dr. Steve Arrowsmith and I operated on a 67-year-old woman who had developed a fistula during

A Walk to Beautiful (Walkto Beautiful.com) is the tale of five Ethiopian women who, having suffered near-fatal childbirth experiences, are left with an obstetric fistula.

Traveling on foot and by bus, braving the scorn of both loved ones and strangers, they come hundreds of miles to Addis Ababa Fistula Hospital, in search of medical treatment that just might make them whole again.

This poignant documentary follows their inspiring journeys to reclaim their dignity and humanity.

Download the film’s action guide at bit.ly/6L98ET.

her third pregnancy, at age 32. She had lived with constant urinary leakage for 35 years, and yet when we examined her under anesthesia, we found her injury to be small. It took less than 30 minutes to repair.

To be sure, not all fistulas are this simple. Many of these birth-induced injuries are breathtaking in their extent and complexity, requiring multiple operations and perseverance on the part of both the surgeon and the patient.What is abundantly clear, however, is that the very existence of this problem is a remediable injustice that demands action.

The need is enormous to expand the capacity to treat these injuries throughout Africa. The Worldwide Fistula Fund is developing a model fistula surgery and training center in Danja, Niger, in partnership with other mission organizations (see “A project in need of support” on page 16). Similar centers based on this model can and should be replicated elsewhere using a network of existing mission hospitals in countries where the fistula problem is endemic.These women have been waiting patiently for years. What are we waiting for? n

A p ro j ect in need of s u p p ort Working in partnership with Serving in Mission (SIM) International (SIM.org), the Worldwide Fistula Fund (WFF;WorldwideFistulaFund.org) is building a model fistula surgery center in Danja, Niger, just south of the city of Maradi. When completed, the center will have an outpatient clinic, a 40-bed inpatient ward, three operating suites, a hostel for long-term patient care, and staff housing. At capacity, the center will be able to carry out over 1,000 operations each year at a projected cost of $450 per operation, as well as to train doctors and nurses from Niger and other countries in quality fistula care.

SIM and the Leprosy Mission have operated a leprosy hospital in Danja for over 50 years. The partnership between SIM and The Worldwide Fistula Fund expands this ministry to another outcast group in need of healing love and medical care. Funds are still needed to complete construction of the fistula complex, which should open in 2011. In the meantime, fistula surgery will be carried out using the renovated operating suite at the Danja leprosarium.

To support this important project, please make your donations at WorldwideFistulaFund.org.

L. Lewis Wall is professor of obstetrics and gynecology in the School of Medicine, and professor of anthropology in the College of Arts and Sciences, at Washington University in St. Louis, Mo. He is the president of the Worldwide Fistula Fund (WorldwideFistulaFund. org), a nonprofit dedicated to promoting excellent, ethical, comprehensive care for women with obstetric fistulas by supporting direct provision of clinical services to birth-injured women, training surgeons in fistula surgery, advocating for the unmet needs of these outcast women, and encouraging scientific research in fistula treatment and prevention.

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