DAR ES SALAAM – Last fall, Agnes, a 26-year old hairdresser living in Mwanza, Tanzania, was pregnant with her second child. She went into labor on the way to visit family in the south of the country and rushed to the nearest public hospital.
It was like too many public hospitals in Tanzania: overcrowded, under-resourced and understaffed. Alone and unexamined, she had a relatively common birth complication – obstructed labor – but wasn’t noticed, or cared for, by the too-few nurses on shift. After an agonizingly long time in labor pain, she was finally examined, and scheduled for an emergency caesarian section. The procedure was a success, and her new baby girl, Aditha, was born.
But because her obstructed labor wasn’t dealt with timely, an obstetric fistula – a hole between the birth canal and the bladder (known as VVF) or rectum (RVF)– formed. The caesarian section probably saved Aditha’s life (most babies born during obstructed labor do not), but it was too late to prevent Agnes from the physical and social consequences of an obstetric fistula.
Her doctor recommended she go to Comprehensive Community-Based Rehabilitation in Tanzania (CCBRT), a large, disability hospital in Dar es Salaam known for its fistula repair operations. After her caesarian section wound healed sufficiently, she did.
CCBRT, a 230-bed hospital set up as a public private partnership with the Tanzanian Ministry of Health, is nothing like its public peers. Its walls are painted with pictures of animals and disabled children; the wards are quiet, calm, bright, and well ventilated; the place just feels clean. There’s even a playground for kids to play on.
I spoke with Agnes in one of the two obstetric fistula wards – a bright, inviting space filled with a number of nurses chatting with patients. Sitting on her bed in a blue hospital gown with Aditha playing at her side, Agnes told me what life was like with an obstetric fistula. Constantly “wet” from the urine and feces that uncontrollably leaked out of her, she couldn’t resume her normal life. “I could not go for weddings, I could not work. I felt bad. It was isolating,” she said. Her normal life was effectively over.
Physically, “a woman with a fistula will leak urine or feces or both,” Dr. D’Mello, an obstetrics and gynecology specialist at CCBRT, told me. As unpleasant as always being “wet” would be, the social and cultural symptoms of the disease may be worse. Like Agnes, they are shunned and isolated by their friends and family members.
They’re also stigmatized. “[Women] are told the myth that surrounds fistula – that you have been unfaithful and this is a punishment for being unfaithful,” Dr. D’Mello said. “So admitting that you have a fistula is kind of opening up this whole stigma… so even declaring that you have a fistula is really not acceptable.” (Agnes asked that her full name not be used and that I not take her photograph out of concern that her neighbors and relatives may learn about her condition)
This is changing in Tanzania, though. The President of Tanzania, Jakaya Kikwete, has been vocal about the need to treat fistula patients humanely: “Society should understand that it is curable. We should stop shunning women suffering from the condition but instead encourage them to come out for treatment.” According to Dr. D’Mello, this and other efforts have been successful at partially reducing the stigma Tanzanian women with fistula face.
The World Health Organization estimates that worldwide, two million women currently live with obstetric fistula, with 50,000 to 100,000 women developing it each year. It’s a disease borne of poverty and lack of access to appropriate maternal care; the global burden falls entirely on women like Agnes, who live in poor countries with inadequate health care systems.
Tanzania, an east African country roughly the size of Nigeria, has 45 million people – only 360 of which are physicians. It has the fewest physicians per capita in the world, according to the New England Journal of Medicine: just 80 per 10 million people. Its neighbors – also severely lacking – have far more (see chart); South Africa and the United States have 95 and 300 times as many physicians as Tanzania, respectively.
The supply of healthcare infrastructure – operating theaters, equipment, and trained staff – hasn’t nearly kept pace with demand in Dar es Salaam. Dr. Brenda D’Mello told me that when she worked at a large public hospital in Dar es Salaam, it was common to see “three, four, five, six women on a bed, every space in between filled with the women.”
“Women were delivering on the floor,” she said.
In urban settings, an obstetric fistula is a direct consequence of the available infrastructure’s inadequacy. A dearth of operating theaters, clinicians, and medical equipment forces physicians to constantly triage cases: “You would get people, women who needed a caesarian section, and they are more than one at a time, and there is one theater. So you end up numbering them by priority,” Dr. D’Mello told me. “The problem with labor: the woman is not going to die… so you can actually wait longer and longer and longer.” After the baby has died, the woman is unlikely to be the patient at highest risk, so she waits, and waits, and develops a fistula.
Improving hospital infrastructure and increasing healthcare staff capacity at the public and private level – to be sure, no simple task – will likely help prevent future fistula cases. And it will make patients happier, too. Agnes told me that “there is a big difference” between public hospitals and CCBRT. “Doctors and nurses really care about the patients. The food is nice. Nurses are loving to patients.”
(It’s worth noting that nurses in public hospitals are loving to patients too – but at an under-resourced hospital where the nurse-to-patient ratio may be 1 to 10 on a good day, it’s a lot harder to show.)
Incontinence resulting from the fistula causes another unique problem for patients: near-constant dirty hospital sheets. At CCBRT, though, Agnes told me, “I get fresh linens every day; when I soil [them] I get new ones. It’s a very clean environment.”
CCBRT provides care for patients with many types of disabilities: cleft lip and palette; burns; club foot; and more. Patients under five and women with obstetric fistula are guaranteed free treatment; middle-class and wealthy Tanzanians pay for the care they receive, which subsidizes care for the poor. Next year, a major expansion will allow it to deliver 15,000 babies per year.
But a few years ago, it found its surgeons ready but its beds empty: women weren’t coming to have the surgery, even though it was free to them (it costs the hospital about $415 for each fistula repair). One of the largest hurdles to providing fistula care is simply that women don’t know it is available; another is that Tanzania is a vast country, and getting from, say, Kigoma in the west to Dar es Salaam in the east is inordinately expensive for many women.
To mitigate these issues, CCBRT created a unique model that draws on a human-powered referral network; M-PESA mobile payment technology; and relationships with far-flung hospitals.
CCBRT’s Ambassadors are an integral part of the obstetric fistula repair program – a human-powered referral network for the hospital. About 550 former patients have been trained to sensitize their communities about obstetric fistula – and to seek out fistula cases (and other disabilities). When an Ambassador finds a fistula patient, she informs a CCBRT staff member, who uses Vodacom’s M-PESA mobile money platform to send enough Tanzanian shillings to cover the cost of a bus ticket.
Until 2012, patients were sent exclusively to the flagship hospital in Dar es Salaam, but thanks to funding from the Vodacom Foundation, CCBRT has assisted in the training and implementation of fistula repair programs in Kigoma, Arusha, and Moshi. Now, patients go wherever is closest, and are picked up at the bus station by a CCBRT staff member. The Ambassador is then sent a small “finder’s fee” of about 10,000 Tanzanian Shillings ($6) to cover the costs of transport and to serve as a small incentive.
This model has been an unabashed success. Before it began, in 2009, CCBRT did 163 fistula repair surgeries; this year, it did 713 (513 at the flagship hospital alone).
Whether or not she becomes an official ambassador, Agnes is likely to spread the word. “I expect to tell all women who have this problem to come to CCBRT,” she told me, unprompted.
I asked how she was feeling now, two weeks after her surgery. She flashed an enormous smile and said simply, “I feel good!” She’ll stay at the hospital for a few more weeks to ensure that the surgery was successful. She’ll spend some time with the women who have shared in her suffering, and then she’ll go home.