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'Dead women walking' find hope in corrective surgery

By David Lindsay, Special to CNN
updated 2:40 PM EST, Fri December 16, 2011
STORY HIGHLIGHTS
  • Fistula is a tear between the birth passage and the bladder or rectum
  • Without corrective surgery, fistulas can leave women incontinent
  • Smell and perception of uncleanliness often lead to social isolation

(CNN) -- Rukia Shabiby's shy but cheerful disposition belies an existence seared with pain, embarrassment and isolation.

Two-thirds of her 39 years have been spent in a state of despair. At age 13, living in Zanzibar off the coast of mainland Tanzania, she was married and became pregnant.

With her body still developing, Shabiby was unable to bear the child, which was stillborn.

But that was just the start of her problems. During the protracted delivery, she suffered an obstetric fistula, which is a tear between the birth passage and the bladder or rectum. It leaves the woman, or in this and many cases, girl, incontinent.

Without corrective surgery it is almost impossible to keep clean and live a normal life. The smell and perception of uncleanliness often lead to social stigmatization, as it did with Shabiby.

The worst part is Shabiby thought she was the only one. In fact, the United Nations estimates there are more than 2 million women living with the condition in developing countries.

Now, 26 years later, Shabiby is ready for a fresh start.

She heard a radio commercial by a disability hospital called Comprehensive Community Based Rehabilitation in Tanzania, which is based in the country's commercial capital, Dar es Salaam. There, she could get a free operation to fix her problem.

"One World Bank report called them 'dead women walking,'" says Tom Vanneste, the hospital's deputy director. "That's how horrible their condition is, how they're completely socially excluded and embarrassed. So they come here very much depressed, very scared, unsure of what their future is."

Later, says Vanneste, they feel liberated: "After surgery they go back home with their dignity restored as new ladies and mothers who can go back out there and have a wonderful life ahead of them."

Rukia Shabiby suffered an obstetric fistula while giving birth at age 13.
Rukia Shabiby suffered an obstetric fistula while giving birth at age 13.

As Shabiby sits on a bench outside the fistula ward on her last day at the hospital, she patiently shows Eric Ndambiri a skill she learned while there: crocheting.

Ndambiri is a registered nurse who works on the fistula ward, soothing the women's fears before surgery and preparing them for a return to society afterward.

He says Shabiby, like many of the women, is leaving with a mission: "When she goes back she's thinking that she's going to be a good ambassador to tell others that even you, who feels the condition is incurable, that somewhere there is a solution for your problem."

Many women in developing countries who get fistulas are from poor rural areas.

Even if they hear they can be cured, they often don't have the resources to pay the bus fare to Dar es Salaam.

To solve that problem, the hospital employs what it calls "ambassadors" to look out for ostracized women with fistulas.

When they find a possible case, they contact the hospital for advice and bus fare.

"When we are sure it's a fistula patient," says Vanneste, "we actually use mobile phone money transfer system technology to transfer the money for transport to the ambassador, who basically gets an SMS that says 'Look, you've received $20 from CCBRT hospital.' He converts the e-money into cash, collects the cash, buys the bus ticket for the patient, helps the patient get on the bus, and basically we pick up the patient here at the bus station and operate on her the next week."

During the two-to-four week rehabilitation after surgery, the women and girls get a chance to bond and hear each others' stories. Many of them remain in touch once they return home.

Others stay in Dar es Salaam for one year, preparing to be more self-sufficient when they return to a world that turned its back on them.

Each year, 18 women who have fistula surgery at the hospital are selected to join the Mabinti Training Center, where they learn sewing, printing and jewelry-making. They're also taught how to speak English and run a small business.

"When I came here I said, 'Wow this is my new beginning. And I have to stick on this so that I can rebuild my life again,'" says Jane Rugalabamu, one of the trainees.

That new life won't be alone. Rugalabamu plans to join with several of the Mabinti women to start a business.

In addition, Rugalabamu plans to spread the word, ensuring that other women and girls don't spend years, sometimes decades, in isolation for a condition that can be cured with an operation that takes less than two hours.

David Lindsay is the managing editor of Global Health Frontline News

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