Faces of fistula

For Batuli Devi Thagunna, her dream of delivering her first child turned into an ordeal.

As the 22-year old went into labor and started showing signs of a complicated delivery, lack of advanced health facility in her village of Judey in the far western district of Darchula worsened the problem. She was carried on a stretcher for six hours before her family hired a jeep for Rs 15,000 to transport the laboring would-be-mother to a hospital in Dadheldhura. Since the hospital didn’t have any O-Negative blood, Thagunna was again taken to a hospital in Dhangadi where she gave birth to her child. But after two days of prolonged labor, her wish of becoming a mother ended as the baby died during delivery.

But Thagunna’s woes didn’t end there. Soon after, she continuously started to leak urine, a medical condition known as obstetric fistula, a hole between the bladder and the vagina.

In Nepal, while safer motherhood, hospital deliveries and uterine prolepses have been widely discussed, obstetric fistula remains an unexplored area.

Dr Kundu Yangzom, Professor and Head of Department of Obstetrics and Gynecology at Patan Academy of Health Sciences, says that in developing countries like Nepal, about 90% of fistula are caused following an obstructive or mismanaged labor. Another 10%, she adds, is uterogenic – that is, when the bladder gets injured during other gynecological surgeries.

“This kind of situation is particularly prevalent in young girls whose pelvis is not mature enough to have babies,” points out Yangzom, a fistula expert in Nepal. For 27 years, she has operated on more than 350 of the 420 cases reported in Nepal. Other reasons for formation of fistula also include malnourishment and lack of proper antenatal care, and most cases go unreported.

Thagunna’s is one such case that represents the face of fistula often being put aside, something that has been termed “disease of the poor and illiterate.”

But prevention is possible and proper treatment achievable. The 16 women who underwent fistula surgery at Patan Hospital’s second fistula camp in coordination with the United Nations Population Fund (UNFPA) Nepal last week paints the picture.

An initiative started by Dr Silvia Scholz, a German missionary who also served as the head of department of Patan Hospital during its early years, the hospital has been the referral center of the country for fistula. Last November, Patan Hospital organized the first fistula camp in Nepal, helping 11 patients. The camp expanded to BP Koirala Institute of Health and Sciences (BPKIHS) in Dharan the same month. BPKIHS, during the camp, had 25 cases and thereafter started treating fistula.

Yangzom says camps such as these not only help bring in patients but also serve as a “capacity building exercise for the doctors [and nurses].” The scene at the campsite reflects that.

As 35-year-old Munchun Chaudhary sits on the hospital bed, sipping a glass of milk a day before her surgery, Bishnu Maya Tamang, nursing officer at BPKIHS and one of the participants at the fistula camp at Patan Hospital, sits beside her.

“Pre-counseling and post-surgery rehabilitation is very important in fistula surgery,” she says, as she explains the dos and don’ts to Chaudhary who has been suffering from the problem for 17 years.

Coming from Siraha district in eastern Nepal, Chaudhary was ignorant of her suffering. A visit to the district hospital and even a medical facility in the border town of Darbhanga in India didn’t diagnose her problem. Thus she lived with it as she gave birth to five children.

At 35, Chaudhary looks older than her age. The tattoos on her chest are faded. Her hair is fizzled and she is expressionless as she shares her story.

“I used to leak when I coughed and lifted heavy things,” she says in Maithili as she leans on her pillow in the hospital bed.

Thagunna’s story is similar: “I had problems in walking and doing the daily chores.”

But apart from physical hardships, the social stigma is harsher. Since they continuously leaked urine, the stench from it barred them from leaving their house so people didn’t know about their problem.

“I isolated myself,” both women say along with 45-year-old Neer Maya Adhikari from Ramechhap, adjacent to Chaudhary’s bed. She shares that because of her fistula problem, she didn’t even go to the nearby tap to fetch water, and mostly stayed indoors.

According to UNFPA, at least two million women in sub-Saharan Africa, South Asia and the Arab region are living with fistula, and some 50,000 to 100,000 new cases develop each year.

In 2003, the organization started the global “Campaign to End Fistula” in 45 countries, including Nepal.

However Nepal’s record-keeping—or even the awareness level— on the data and statistics for fistula is almost next to nil.

Dr Grace Chen from the Department of Gynecology and Obstetrics at Johns Hopkins School of Medicine in the United States said that she is doing her research on the issue in Nepal.

“My primary aim  is to validate and understand the magnitude of the problem, to come up with instruments to find out if it’s a big problem,” she said in a telephone interview from Baltimore where she is based.

Chen, Assistant Professor of  female pelvic medicine and reconstructive surgery, started her research on the prevalence and risk factors of obstetric fistula in rural Nepal and has visited the country twice. The research, mainly based in Sarlahi district, will take another year to complete.

“In many other parts of the developing world, obstetric fistula is a problem because of the lack of readily available emergency obstetric care,” she told The Week.

And when the government is gearing up to meet the United Nations Millennium Development Goals (MDGs), it seems it has sidelined an important issue as fistula.

However, Dr Sudha Sharma, Health Secretary, says that the general impression compared to other health burdens such as uterine prolapses, which is highly prevalent in Nepal, fistula cases stands at a minimal level.

“For comprehensive management of all urological disorders in women related to prolapse and fistula, the government is helping the Maternity Hospital to develop itself as an urogynecological center,” Sharma said.

But proper mechanisms should be put into place and appropriate research should be conducted, says Professor Sayeba Akhter, former president of the Obstetrical and Gynecological Society of Bangladesh, who was recently in Nepal. In cooperation with the government and development partners, the country of an estimated 140 million has established the National Fistula Center and has 10 fistula corners at government medical college hospitals. Since 2003, the center has operated on 2,412 patients with 90% success rate, and the capacity of service providers has increased from 21 in 2003 to 64 by 2010.

“The other name for fistula is failure,” Akhter said to the group of doctors and nurses in Kathmandu attending the fistula camp, elaborating that as medical practitioners they have to put more effort and there should be more awareness on the topic.

In Nepal, Secretary Sharma says that a national strategy for prolapsed prevention is underway, which addresses a range of urogynecological abnormalities, and its implementation will “have a clear programmatic resource allocation.”

But along with policies, fistula expert Yangzom believes that awareness and prevention is the key to achieving success in ending fistula.

“Prevention begins right from the upliftment of women to educating the female child, her nutrition and her placement in the family and society,” she says.

As the senior gynecologist makes her round to visit Thagunna in the post-operative ward, she is sitting on the hospital bed with a glass of lentil soup and a half-eaten samosa. The young woman’s suffering was overlapped by a layer of bright smile. She is almost fit to go home and has passed the blue test, a procedure to make sure that the hole has been closed in the bladder.

Yangzom slowly caresses her cheeks and asks if she would spread the awareness on fistula after her return to the village.

“Yes, I will,” Thagunna says in a shy tone, retaining the smile on her face for now her suffering has ended.

Published in Republica The Week, May 28, 2011