Tuesday, February 20, 2007

A Modern Leper

As a middle-aged white man traveling in the eastern border region of Kenya, I am used to being stared at. Adult African men are usually polite and often friendly. Women tend to avert their eyes if you return their gaze; in groups they often giggle when you have passed them. Children in gaggles will regularly call out, muzungu! or kawajia! Swahili and Arabic respectively for white man. Somali kids frequently use the less friendly epithet, galadin! Meaning ‘white pagan’, sometimes it is accompanied by a few lumps of dried goat droppings.

I was therefore not surprised by the patient’s inability to take her eyes off my face when she walked into the examination room. I was, though, disturbed by a sudden look of fear. I was even more troubled when the nurse led her to a chair in the far corner of the room; the girl carefully spread out a plastic bag on the seat and sat on it. Her shoulders drooped; head bowed she stared at the floor. Michael, the surgeon whose clinic I was sitting in on, began to speak to the nurse in his usual quiet tone.

The nurse explained the girl was from a village over the border in Ethiopia. Most unusually she had arrived alone at the clinic the day before (young women in this part of the world seldom travel alone). The nurse had conducted a brief examination and extracted a full story from the young woman; although she was not on the surgical outpatient list Michael had agreed to see her. I sat mute as her story unfolded and Michael interpreted.

Her name was Athar and she was nineteen years old. Her tiny body, curled up on the seat seemed more like a twelve-year olds. In accordance with local tradition, shortly after the arrival of her first period her family had arranged her marriage. She was thirteen years old; her husband was in his twenties. Within a year she was pregnant and went into labor before her fourteenth birthday. Like the majority of pregnant women in Africa, she was to deliver the baby at home. Her mother-in law and other female family members would assist. If there were problems a traditional birth-attendant, with no formal obstetric training or medical equipment, could be called upon to help. The nearest medical facility was days away. Antenatal care was unheard of.

After two days of labor during which her relatives had told her to just keep pushing and her only sustenance was water, the traditional birth attendant was summoned and paid. For three more days Athar endured the excruciating agony of obstructed labor, growing weaker by the hour. On the sixth day the birth attendant laid her on the hut floor and sat on her belly and pressed and pressed. She remembers little more of her ordeal.

Over the ensuing days the terrible pain in Athar’s abdomen began slowly to subside but she was unable to get out of bed. He mother-in law finally told her baby had died. One morning she woke to find to her horror that her mattress wet, she was dribbling urine and she could not control it. The women of her family examined her, held a brief discussion, carried her from the house and laid her on her wet mattress in a hut next to the chicken coop. She was told never to enter the house again.

The months and years that followed were almost too awful and sad to relate. Her incontinence made her clothes and bed permanently wet and despite all her efforts, she began to smell, constantly and terribly. Her husband sent her back to her family he didn’t want her anymore. They too rejected her and banished her to an outhouse. Her childhood friends deserted her and she was soon completely alone, even the village children threw stones at her and held their noses. This was to be Athar’s existence for the next five years; she was an outcast, a modern day leper.

A weaker person might have succumbed to the loneliness and the shame. But Athar was made of stronger stuff. She took odd jobs, mostly carrying heavy loads of wood, and built a hut on the edge of the village. She kept as clean as she could and raised a garden to feed and keep herself strong. She was reconciled to a life alone. One day an erstwhile friend spoke to her. She told of a hospital across the border in Kenya where doctors visited and helped women with her affliction. Now here she was, desperate to be ‘made clean again’.

Michael spoke to her softly for a little while; she raised her head, put back her shoulders and nodded in reply. Her face lit in a smile and I saw in her eyes the strength that had got her this far. Michael had told her he would help her; the first step was to examine her thoroughly in the operating theatre that afternoon. As she stood up to leave I realized the significance of the plastic bag on the chair, this was how she coped with life sitting in her own little puddle. Very carefully she folded in the edges and trapped the fluid to carry it away.

Athar suffers from Vesico-Vaginal Fistula, commonly known by the acronym VVF. She is one of an estimated 2 million young women in the developing world, mainly in Africa, who suffer from this painful and devastating consequence of complications in childbirth. The most usual cause and effect is that the young woman’s pelvis is too small to allow the passage of her baby’s head or the baby is badly positioned and she goes into prolonged obstructed labor. In the absence of trained medical assistance and resources (usually to perform a Caesarian Section) the labor ends disastrously, the baby dies and the mother’s birth canal is badly damaged. Prolonged pressure of the fetal head compresses the bladder against the bony sidewall of the pelvis. Crushed in this way over a period of days, the tissue dies creating an abnormal communication or fistula between bladder and vagina. Sometimes the fistula will be between vagina and rectum, or both, creating a constant leakage of urine or feces.

VVF seems to have been common throughout history, evidence of the affliction has been found in an Egyptian mummy. Once widespread in Europe and America, fistulas were eradicated by modern medical care early in the 20th century. They are still pervasive in the developing world, where malnutrition and stunted growth make obstructed labour more likely, where cultural practices lead to early marriages and early pregnancies and where health care is largely unavailable or extremely limited. It is estimated in Africa alone there are over three million deliveries annually where the mother survives and the complication occurs in about two to five cases per 1,000 surviving mothers; this means about 6,000 to 15,000 new VVF cases a year.

While VVF is devastating, it can be repaired. The surgery is relatively straightforward but each procedure costs about $300 and requires that surgeons be trained in the techniques. This raises two problems. The price is out of reach of most young women and must be performed at no cost, offering little incentive for surgeons to train and work in the specialty. Second, the scale of the problem, up to 15,000 new cases each year, and its distribution, in the under-served rural areas, necessitates a huge training bill, which cannot be met by most health ministries in Africa. As a result, much of the work in VVF in Africa is undertaken by outside organizations, particularly missionary hospitals and NGOs.

AMREF’s surgical outreach service (on which I was accompanying Michael when I met Athar) has provided VVF repair at no cost to the patient for over 20 years. Its service differs from other organizations in that it emphasizes taking specialist care to the remote rural hospitals – some 30 hospitals in Kenya, Somalia, Sudan, Tanzania and Uganda – rather than bringing the patients to specialist centres. AMREF’s current specialist surgeon, Dr Tom Raassen, performs hundreds of cases annually in rural hospitals and has a teaching programme in a number a of major hospitals throughout the region. His aim is to both alleviate the suffering of young women and to create national pools of surgical expertise.

As with most healthcare problems in Africa, the size of the task is beyond existing resources. Dr Ruth Kennedy of the Hamlin Fistula Hospital in Addis Ababa crystallized the debate “…There are more than 100 new fistula cases every day. At the rate we are going and if we have no more fistulas from today on, it would take 400 years to repair the ones that exist today." There must be more effort in prevention. We cannot solve the problem by concentrating all our efforts on fixing the broken.

In 2002 the UN Population Fund (UNFP) launched a two-year campaign to address VVF, through the provision of financial and technical support to train doctors and nurses and provide essential medial equipment. The programme is due to end this year; its impact has yet to be felt in this part of the world. I am convinced that a viable prevention programme must focus on:
• Eleveating poverty
• Educating women
• Educating communities to modify early marriage and end juvenile pregnancy
• Reproductive health education and providing family planning resources
• Building sustainable antenatal and obstetric care resources in rural areas
• Enhancing existing repair capability, particularly in rural areas

Later that same afternoon, Athar was wheeled into the operating theatre. A heft dose of Pethidine had given her a sloppy grin. She was uncomplaining as Michael undertook a detailed examination of the terrible damage to her body. He concluded that whereas the injury was repairable, she should be referred to an experienced specialist in VVF, Dr Tom Raassen, who would be visiting the following month. A few hours later, I watched as Michael explained to her what he had found and what should be done. She chewed on her bottom lip and shed a solitary tear as he told her she would have to wait another month for the surgical repair. A short while later I watched as she carried her little bundle of belongings out of the ward and into the dusty, hot street. What would she do alone in this border town, waiting another month for surgery? I will never get used to the bravery of African women.

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