Curing a Stigma

Munna is a village woman living in rural Rajasthan. During her pregnancy in 2010, she had experienced pain in her hands and feet. She sought medical help, but nothing was revealed. She must have felt worried, especially because she even took precautions, a tetanus shot and nutrient supplements, to make sure her baby will be healthy. A few weeks later, Munna gave birth to her daughter Kalpana in a government hospital. At 1.5 kg, Kalpana was considerably under-weight, but the doctors cleared her to leave the hospital, and Munna returned home with her new daughter.  

It turned out that Kaplana was born with anorectal fistula, a defect in which a hole develops in the outer layer of the rectal tissue, thus creating an abnormal passageway between the rectal area and (typically) the skin. This results in abnormal and uncontrollable discharges of feces and pus through an opening other than the anus. At the time of munnaKalpana’s birth, the pediatric doctor did not inform Munna about the defect. She was left to discover the defect herself. Kalpana’s parents travelled to Udaipur city and the nearby state of Gujarat for medical consultations, to find out what they can do. Unfortunately, the family could not afford any of the treatment options, and Kalpana’s parents returned home feeling hopeless.  

The most serious risk of fistula is infection, but typically this condition is not life threatening. It can, however, be considerably painful and cause major irritation. But aside from the physical symptoms, fistula is like a stigma.  Typically, fistula happens to women during childbirth. There are anywhere from 30,000 – 50,000 cases a year, most often in Africa and South Asia. But to be born with it is less common. The social stigma attached to this disorder is perhaps the most damaging of all. Women are often neglected and cast out from their homes, left to fend for themselves. Children become socially excluded, and often experience an isolated childhood.

Three years have passed since the discovery of Kalpana’s illness. Munna, who has to work during the day, leaves her daughter a local pre-school run by Seva Mandir. In October 2012, the teacher at the pre-school informed Munna about the bi-weekly Maternal and Child Health camps run at Kojawara Referral Health Center (RHC), also run by Seva Mandir. At the RHC Kalpana was examined by the medical officer, Dr. Salvi, who referred her to a medical college in Udaipur. On November 1st, 2012, Dr. Manish Pathak, a pediatric surgeon, examined Kalpana and told her parents that the treatment will include three operations.  On her next visit to the health camp, Munna was persuaded to go ahead with the first operation, which was paid for by Seva Mandir.

Four days later, on March 17th, Kalpana was operated on for Vestibular Fistula. She has responded well to the surgery, but requires further operative care and the Seva Mandir staff will regularly follow up her case until the treatment is completed. In an area where nature and society can seem so unforgiving, the services and funds provided by Seva Mandir fight to improve the quality of life for people like Kalpana.

 

In the period Oct 2012 to March 2013, the Kojawara RHC operated 50 camps. A total of 1,531 female patients were provided Antenatal care and Gynecological services and 699 children under the age of five were examined and treated.