Fistula: The affliction destroying Afghan women’s lives
A female-run clinic in Afghanistan is providing free, life-changing surgery to women suffering from fistula.
Kabul, Afghanistan – With 2,000 babies delivered each month, the Malalai Maternity Hospital in Kabul buzzes with a joyous kind of bedlam.
Clipboard-wielding nurses power walk through the hallways. New mothers coo at tiny newborns. Every so often, a woman in labour is rushed through the throng towards the delivery room.
But at the end of a long hallway, away from the chaos, is a wing where women lie silent and downcast, swaddled in heavy blankets, and the only laughter comes from a Turkish soap opera playing on a television set.
Over the entrance a sign reads: Fistula Clinic.
Inside, 44-year-old Kobra, who has beautiful, strong features worn by years of tough rural living, sits on a bed covered with a plastic sheet.
“I have thought to myself every night,” she says, stretching her hands out, palms up, “why did this happen to me?”
Explained in medical terms, fistula, as dealt with at Malalai Hospital, is a hole between the vagina and the bladder or rectum, or sometimes both. It is often, but not always, obstetric – the result of a difficult, lengthy childbirth. There are many other causes too, including trauma from sexual assault and prolonged infections.
It has been all but eliminated in developed countries. When it does occur, it can nearly always be cured by inexpensive, uncomplicated surgery.
But in countries such as Afghanistan, it is destroying thousands of women’s lives.
A woman with fistula suffers chronic incontinence. She constantly leaks urine or faeces through her vagina, forcing her into a never-ending, futile battle to stay clean, made all the more difficult for the many without ready access to clean water. Some endure burns on their legs from acid in the urine.
But above all, fistula’s greatest impact is psychological. The chronic incontinence emits a foul smell, bringing the woman intense, constant shame.
Kobra has had fistula for seven years. She has iatrogenic fistula from a botched hysterectomy.
She counts herself lucky to have a supportive family, but has not held her young children in her arms for years: she’s afraid they’ll recoil from her – her clothes are often soiled and wet.
Her poverty has only exacerbated the toll of her fistula. With incontinence, she is unemployable. Her husband earns only a small daily labourer’s wage – just enough to cover the basics for a family of seven, but not for a modicum of comfort.
Unable to afford incontinence pads, she would make three trips to the bathroom every night, but would still soak her sheets. “I would wake up ashamed,” Kobra says.
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“Ninety percent of the fistula cases I see are because of poverty,” says Dr Nafiza, the chief surgeon at the Malalai fistula clinic. Malalai is Afghanistan’s only public hospital providing fistula surgery. For those who can afford it, there are a few private clinics providing treatment for fistula.
Afghanistan’s limited access to healthcare, lack of skilled birth attendants such as midwives, and poor education create a perfect storm for fistula, Nafiza explains.
Other factors are cultural: Women in Afghanistan are often deprived of choice in family planning and even their own healthcare.
Early marriage is another problem.
Despite laws banning marriage under the age of 16, many Afghan girls are married in their early teens, often before their pelvises are fully developed to cope with childbirth.
Ninety percent of the fistula cases I see are because of poverty
Giving birth so young often leads to obstructed labour where prolonged pressure on the pelvic bone cuts off blood supply to the surrounding tissue. That tissue dies, gradually wasting away, creating a hole between the bladder, or less commonly the rectum, and the birth canal.
“We see a lot of girls, maybe around 70 percent, who come in [with fistula] because they gave birth too young,” says Nafiza, noting that she often has patients as young as 15.
Afghan girls, particularly from rural, impoverished areas, often suffer stunted growth due to poor nutrition, meaning their teenage bodies are even less prepared for childbirth.
While no reliable statistics exist, an estimated 3,000 women in Afghanistan have fistula, according to Dr Bannet Ndyanabangi, the country director for the United Nations Population Fund (UNFPA) in Afghanistan, which works to improve maternal and reproductive health.
One indicator is maternal health, Ndyanabangi says.
“When maternal mortality is high, then the prevalence of fistula is high.”
Today, Afghanistan’s maternal mortality rate is about 327 per 100,000 live births, according to UNFPA. It’s a dramatic reduction from the 1,600 per 100,000 live births recorded in 2002, but it is still high.
“That means you have 12 women a day in Afghanistan dying in childbirth,” Ndyanabangi says. “Fistula cases could be three or five fold that.”
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Shunned by society
For an injury so prevalent, fistula remains so poorly understood in Afghanistan that it is known by several different names across the country.
It is also common for local doctors to send patients away with medicine, which does little but give the afflicted woman temporary false hope.
Farida*, a 44-year-old from Takhar, a remote northeastern province, was one of the many women who received nothing but useless medicine for her fistula.
In the recovery ward at the Malalai fistula clinic, she explains that before her surgery 10 days prior, she had unsuccessfully sought help from doctors for 16 years.
But recently, a doctor in Takhar, having received basic UNFPA-funded fistula training from Nafiza, finally referred Farida to Malalai, where she was quickly diagnosed and admitted for surgery.
Farida had obstetric fistula as a result of childbirth. Like many poor Afghan women, she had no prenatal care, and attempted to give birth at home without a skilled attendant.
After 20 days of labour, her husband finally summoned a local doctor, who gave her an injection to abort her stillborn baby.
Fifteen days later, still grieving for her lost child, Farida’s constant leak of urine began. She was fortunate to have an understanding husband, she says, but felt mortified by her evening ritual of bathing immediately before bed. After having sex with her husband, she would sleep in a separate room, the sheets slowly soaking with an acrid smell. “I used to cry all night,” she says.
I used to cry all night
Farida also felt like a social outcast. Though cured, she breaks down in tears as she recalls her humiliation whenever she attended a wedding.
“I would wear my nicest clothes and [incontinence] pads,” she remembers in a quiet voice.
“I would sit among the other guests and eventually I would notice them holding their noses because of my smell.”
The extreme stigmatisation and shame often stems from a deep misunderstanding of how the injury is caused.
“I hear a lot from my patients that they believe [their fistula] is a punishment from God,” Nafiza says.
Families and communities often share this belief. It is not uncommon, Nafiza says, for husbands to accuse wives afflicted with fistula of adultery or other “sinful” behaviour.
“Often their husbands divorce them and they’re forced to go back to their parents,” she says. “Once we had a patient at the hospital for two-and-a-half years and she didn’t have a visitor that entire time.”
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The women-run clinic
The Malalai fistula clinic is staffed entirely by women.
Nafiza heads a small all-female team of doctors, nurses and support staff, serving hundreds of patients every year. UNFPA funds 150 obstetric fistula surgeries each year.
The cost of the surgery is covered, as is travel and accommodation and the majority of food and medicine, which comes to $1,200 for each patient.
Perhaps surprisingly, the surgery for such a debilitating injury can take as little as 30 minutes.
Many of the female doctors count decades of medical experience, but like millions of other Afghans, left during Taliban rule. Dr Pashtun Kohestani, 48, worked at Malalai in the maternity ward throughout the Taliban period, one of only a handful of women allowed to work under suffocating conditions.
Today, each of the doctors file in to Nafiza’s office, wearing vibrant, sequin-studded coats, one carrying a leopard-print bag, greeting each other with hugs and cheek kisses.
Nafiza’s office doubles as a tiny changing room. They each change into scrubs in their favourite colour. Nafiza is decked out in all pink, Kohestani wears forest green, Dr Gulbibi Totakhail Yare, ice blue.
With Kobra’s consent, I am invited to watch Kohestani, with Gulbibi supporting, perform surgery to cure her fistula. Gulbibi has her own private clinic but has come in to assist Kohestani. The two doctors have been friends for 20 years.
“Lots of patients come to me with fistula,” Gulbibi says.
“So I thought that I should increase my knowledge [and] experience to be more supportive and helpful to my patients.”
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Fistula patients at Malalai receive a local anaesthetic. As we enter the operating theatre, Kobra grunts quietly with pain as a spinal injection is administered, before she lies down on the operating table, her legs eased into stirrups by the nurses.
“Look,” Kohestani says, pointing to a slow stream of urine running from Kobra’s body, dripping off the plastic sheet-covered table into a surgical bin at the end of the table, “that’s fistula.”
As her injury is located higher than usual inside the birth canal, Kobra is scheduled for a gruelling four-hour surgery.
A blue dye is gently pumped into the urethra, and immediately runs out of the birth canal – a final, definitive confirmation of her condition. From there, using a metal catheter, Kohestani begins to locate the fistula.
The surgery is a study in frustration and patience. The banter between the doctors and nurses fades as everyone watches Kohestani work, alternately sitting and standing to ease the cramps in her legs.
After 90 minutes, complaining of the heat but unable to wipe away the sweat on her brow, the surgeon finally eases the metal catheter through the fistula. The nurses cheer. Once the metal catheter is in place, the team proceeds to close the hole with medical sutures. A nurse constantly suctions away the pooling blood.
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When Kohestani angrily debates with nurses over whether the hospital has a particular size of surgical suture, Kobra tries to lift her head for just a second, perceiving the commotion.
Kohestani holds up a needle she complains is of inferior quality.
Two hours into the surgery, Kohestani sighs as the electricity in the surgery room cuts out. Only one emergency plug in the theatre works.
After briefly using mobile phones to light the room, Kohestani orders a spotlight to be turned on, forgoing the suction to remove the blood.
Gulbibi and an assistant nurse begin to swab the blood with medical gauze. Another nurse is ordered to massage Kohestani’s cramping shoulders.
Despite the frustrations, Kohestani says it is greatly rewarding to work with fistula patients.
Malalai has a 95 percent success rate of curing fistula, changing the lives of women who have “faced so many problems and heartaches,” she explains.
“I feel even happier than the patients themselves,” Kohestani says. “I cry with them when it’s time to say goodbye.”
After nearly four hours of surgery, Kohestani, applying disinfectant to her patient’s sutured fistula and legs, announces: “Kobra, it’s finished.”
Kobra tries to raise her head, but still finds it too difficult under the weight of the anaesthetic.
She instead turns to look at me, raising her eyebrows, as though to ask if the surgery has been a success. I smile, nod and give her a thumbs up. A slow, wide smile spreads across her face.
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*Farida is a pseudonym used at her request
Additional reporting by Nazi Karim
You can follow Danielle Moylan on Twitter at @danielle_jenni.