Having Down Syndrome in Nepal

Down Syndrome News, Vol. 31, No. 4

Having Down Syndrome in Nepal
By Viviana Fernandez, Snellville, GA

Editor’s note: NDSC Board Member Viviana Fernandez recently returned from a visit to Nepal where she spent nearly a month as a volunteer at the Matri Griha Center for Children with Disabilities.

Five years ago, Shila Tapa’s family finally seemed “complete” when she gave birth to Subas, a beautiful baby boy. In Nepal, the birth of a boy is revered by the whole extended family.

A few months later, Shila began noticing that Subas kept turning blue. Nepal is one of the poorest countries in the world and no one in the medical community could diagnose the problem. In frustration, Shila’s family decided to fly to neighboring India where, five months after his birth, a doctor finally told them that Subas had a heart defect that required immediate surgery and he had Down syndrome.

The family understood that the heart problem required immediate surgery. However, they did not know about DS. In Nepal, many people consider disabilities to be “bad karma,” so they are a source of shame and to be hidden. Mothers are blamed, which is a reason to abandon a child or not provide adequate health care. Many doctors don’t know how to diagnose DS and those that do typically predict a grim outcome. There are no geneticists and, despite a population of 25 million, there are only 100 or so certified physical therapists.

Shila and her family turned their despair into strength and a labor of love to help Subas. The Tapas began their mission to help all children with DS in Nepal. While the stigma associated with a disability still plagues the country, India offered more diverse sources of information, so Shila decided to stay for awhile to learn more about DS. She was determined to return to Nepal to provide the best for Subas and help other Nepali families. Shila studied physical therapy, so that she could help Subas.

The whole immediate family, including Shila’s mother-in-law, became very involved with getting Subas on the right track after his operation. In Nepal, a mother-in-law will typically shun a daughter-in-law who gives birth to a child with a disability, likely even encouraging her son to leave his wife and re-marry.

Two years ago, the Down Syndrome Association of Nepal set up shop in the family’s house, which belongs to Shila’s mother-in-law. Two floors which used to be rented out to generate income have been turned into a therapy space with room for activities, therapies and a preschool for children with DS. Most of the operation’s funding comes from Shila’s relatives, who donate what they can out of their own pockets.

Shila learned some techniques for early childhood speech therapy by attending a program in Thailand. The few certified speech therapists in Nepal charge a lot of money for their scarce services. An Australian OT student volunteer provides assistance with fine motor refinement exercises.

Shila heavily lobbied a Nepali TV station to feature a program about DS. This unprecedented move generated many calls from parents who, until then, had struggled alone with their child’s diagnosis — or lack thereof.

One DSA Nepal board member has a teenage son. The mother hid her son’s diagnosis so that he would be able to attend a typical school, though school officials soon found out that he had DS. This boy has become an incidental example of what is possible with inclusion.

Shila’s work has begun to spread outside of Kathmandu to other areas in Nepal. Recently, Shila went to the city of Pokhara, hoping to connect with other parents who, out of shame, have not come out to the ”real world.” She is currently working on what her next steps will be.

The United Nations Women’s organization in Nepal recently recognized Shila as making a significant contribution toward the betterment of women and children in Nepal. Shila hopes this award will help her obtain funding from sources other than her family. During my visit, Shila gathered representatives from the country’s different disability organizations. Nepal was recently declared a secular state and is creating a new constitution. We talked about the importance of making a united front for new legislation to protect their rights.

While there are many achievements to celebrate, many struggles and sorrow remain. The week before I arrived, the association lost one of its members. Doctors could not or would not operate on a boy with a heart defect. His picture, in the form of an altar with offerings around it, is a sad reminder of the long road that lies ahead in Nepal for families who have a member with DS. Vowing not to give up their fight to improve the situation for people with DS in Nepal, DSA Nepal provided moral support and a religious ceremony in memory of the boy.

To get in touch with DSA Nepal to donate or volunteer, write to Shila Tapa at: dsanepal@mos.com.np.