AFTER A DEVASTATING BIRTH ENJURY, HOPE

The New York Times

(February 24,2009)

DODOMA, Tanzania

Lying side by side on a narrow bed, talking and giggling and poking each other with skinny elbows, they looked like any pair of teenage girls trading jokes and secrets.

But the bed was in a crowded hospital ward, and between the moments of laughter, Sarah Jonas, 18, and Mwanaidi Swalehe, 17, had an inescapable air of sadness. Pregnant at 16, both had given birth in 2007 after labor that lasted for days. Their babies had died, and the prolonged labor had inflicted a dreadful injury on the mothers: an internal wound called a fistula, which left them incontinent and soaked in urine.

Last month at the regional hospital in Dodoma, they awaited expert surgeons who would try to repair the damage. For each, two previous, painful operations by other doctors had failed.
“It will be great if the doctors succeed,” Ms. Jonas said softly in Swahili, through an interpreter.
Along with about 20 other girls and women ranging in age from teens to 50s, Ms. Jonas and Ms. Swalehe had taken long bus rides from their villages to this hot, dusty city for operations paid for by a charitable group, Amref, the African Medical and Research Foundation.

The foundation had brought in two surgeons who would operate and teach doctors and nurses from different parts of Tanzania how to repair fistulas and care for patients afterward.
“This is a vulnerable population,” said one of the experts, Dr. Gileard Masenga, from the Kilimanjaro Christian Medical Center in Moshi, Tanzania. “These women are suffering.”

The mission — to do 20 operations in four days — illustrates the challenges of providing medical care in one of the world’s poorest countries, with a shortage of doctors and nurses, sweltering heat, limited equipment, unreliable electricity, a scant blood supply and two patients at a time in one operating room — patients with an array of injuries, from easily fixable to dauntingly complex.

The women filled most of Ward 2, a long, one-story building with a cement floor and two rows of closely spaced beds against opposite walls. All had suffered from obstructed labor, meaning that their babies were too big or in the wrong position to pass through the birth canal. If prolonged, obstructed labor often kills the baby, which may then soften enough to fit through the pelvis, so that the mother delivers a corpse.

Obstructed labor can kill the mother, too, or crush her bladder, uterus and vagina between her pelvic bones and the baby’s skull. The injured tissue dies, leaving a fistula: a hole that lets urine stream out constantly through the vagina. In some cases, the rectum is damaged and stool leaks out. Some women also have nerve damage in the legs.

One of the most striking things about the women in Ward 2 was how small they were. Many stood barely five feet tall, with slight frames and narrow hips, which may have contributed to their problems. Girls not fully grown, or women stunted by malnutrition, often have small pelvises that make them prone to obstructed labor.

The women wore kangas, bolts of cloth wrapped into skirts, in bright prints that stood out against the ward’s drab, chipping paint. Under the skirts, some had kangas bunched between their legs to absorb urine.

Not even a curtain separated the beds. An occasional hot breeze blew in through the screened windows. Flies buzzed, and a cat with one kitten loitered in the doorway. Outside, kangas that had been washed by patients or their families were draped over bushes and clotheslines and patches of grass, drying in the sun.

Speaking to doctors and nurses in a classroom at the hospital, Dr. Jeffrey P. Wilkinson, an expert on fistula repair from Duke University, noted that women with fistulas frequently became outcasts because of the odor. Since July, Dr. Wilkinson has been working at the Kilimanjaro Christian Medical Center, which is collaborating with Duke on a women’s health project.

“I’ve met countless fistula patients who have been thrown off the bus,” he said. “Or their family tells them to leave, or builds a separate hut.”
For the women in Ward 2, the visiting doctors held out the best hope of regaining a normal life.
Fistulas are a scourge of the poor, affecting two million women and girls, mostly in sub-Saharan Africa and Asia — those who cannot get a Caesarean section or other medical help in time.

Long neglected, fistulas have gained increasing attention in recent years, and nonprofit groups, hospitals and governments have created programs, like the one in Dodoma, to provide the surgery.
Cure rates of 90 percent or more are widely cited, but, Dr. Wilkinson said, “That’s not a realistic number.”

It may be true that the holes are closed in 90 percent of patients, but even so, women with extensive damage and scarring do not always regain the nerve and muscle control needed to stay dry, Dr. Wilkinson said.
Ward 2 at the hospital is a long, one-story building with a cement floor.

Ideally, fistulas should be prevented, but prevention — which requires education, more hospitals, doctors and midwives, and better transportation — lags far behind treatment. Worldwide, there are still 100,000 new cases a year, and most experts think it will take decades to eliminate fistulas in Africa, even though they were wiped out in developed countries a century ago.

Their continuing presence is a sign that medical care for pregnant women is desperately inadequate.
“Fistula is the thing to follow,” Dr. Wilkinson said. “If you find patients with fistula, you’ll also find that mothers and babies are dying right and left.”
The day before her surgery, Ms. Jonas sat on her bed, anxiously eyeing the other women as they were wheeled back from the operating room. Some vomited from the anesthesia, and she found it a distressing sight.

Ms. Jonas said that when she was 16, she became intimate with a 19-year-old boyfriend, without realizing that sex could make her pregnant. It quickly did. Her labor went on for three days. By the time a Caesarean was performed, it was too late. Her son survived for only an hour, and she developed a fistula, as well as nerve damage in one leg that left her with an awkward gait.

Her boyfriend denied paternity and married someone else, and some friends abandoned her because she was wet and smelled. She was living in a rural village in a two-room mud hut with her parents, two sisters and a brother. She had one year of education and could not read or write, but said that she hoped to go to school again someday.

The operating room in Dodoma had just enough room for two operating tables, separated by a green cloth screen. Two at a time, the patients, wearing bedsheets they had draped as gracefully as their kangas, walked in. Some were so short that they needed a set of portable steps to climb up onto the table.

The women had an anesthetic injected into their spines to numb them below the waist, and then their legs were lifted into stirrups. Awake, they lay in silence while the doctors worked, Dr. Masenga at one table and Dr. Wilkinson at the other, each surrounded by other doctors who had come to learn.

An air-conditioner put out more noise than air. Flies circled, sometimes lighting on the patients. A mouse scurried alongside the wall. There were none of the beeping monitors that dominate operating rooms in the United States. Periodically, a nurse would take a blood pressure reading.
Midway through the first operation the power failed, and the lights went out. Dr. Wilkinson put on a battery-powered headlamp and kept working, but Dr. Masenga had to depend on daylight. Their scrubs and gowns grew dark with sweat.

Most fistula surgery is performed through the vagina, and can take anywhere from 30 minutes to several hours. It involves more than simply sewing a hole shut: delicate dissection is needed to loosen nearby tissue so that there will not be too much tension on the stitches, and sometimes flaps of tissue must be cut and sculpted to patch or replace a missing or damaged area. It can take several weeks to tell how well the operation worked.

At the end of the week in Dodoma, the surgeons said that of the 20 operations, some were straightforward and easy, and a few seemed likely to fail. Three patients needed such complicated repairs that they were referred to the Kilimanjaro medical center

.
At first, it seemed as if Ms. Jonas’s operation had worked, while Ms. Swalehe’s outlook was uncertain. Shortly after their surgeries, the two young women were violently ill. Ms. Swalehe wept from pain when the surgeons came in to check on her. But both women were smiling the next day, hoping for the best. (Ultimately, Ms. Jonas’s surgery failed, and Ms. Swalehe’s succeeded.)

One day after the last operation, the fistula surgeons moved on, already thinking about the countless new cases that awaited them.