Sulekha and Sushavam: Surmounting stigma and racing into a new life
When Sulekha gave birth to her son Sushavam, it was her mother who gently informed her that there was something wrong with his tiny feet.
“When she first told me I cried a lot,” she remembers emotionally. “I didn’t even eat, I just cried and cried. Even now…” her voice trails off as tears run down her face.
Like most mothers in her situation, Sulekha wondered why this was happening to her, why was her little one born with clubfoot?
“I used to question why God gave me such hardship. What had I done wrong?”
On top of her grief, doubt and guilt were heaped onto her through the whispers and glances she caught from her neighbors, and even at times from her in-laws, speculating at what evil sins she must have committed to bring such shame and misfortune to her family.
“I had a heavy heart,” she says remembering the blame she felt. “The things people used to say still play in my mind.” It got so bad that Sulekha stayed inside the house and avoided going out as much as possible.
This new reality of worry and isolation was a stark contrast to the joy and excitement she and her husband felt when they first found out they were expecting a baby. But now, on top of their concerns about Sushavam, they were apprehensive about having more children for fear that they might also be born with clubfoot.
Sulekha and Sushavam live in a small village near Lahan, Nepal with Sulekha’s in-laws and their extended family. Sulekha’s husband works in Saudi Arabia as a day laborer, occasionally visiting, but is gone most of the time, so the task of finding treatment for Sushavam fell solely to her.
With little family support and no knowledge about treatment options, it was mostly fortune that led Sulekha to find care for her young son.
Sister Bharati, a community outreach worker with the Hospital for Rehabilitation and Disabled Children (HRDC), MiracleFeet’s partner in Nepal, visited Sulekha’s village and heard about Sushavam’s condition. Bharati counseled Sulekha and told her not to worry – treatment was not only possible, but also available for free at a nearby clinic.
Sulekha needed little convincing to go, but Bharati showed her photos of other children born with the same condition who were now walking normally on straight feet.
At one time, Sulekha felt like she was the only mother in the world dealing with clubfoot, but her first visit to the clinic brought a huge sense of relief—not only in finding treatment for her son, but also learning that there were other families facing the same struggles.
At his initial appointment, Sushavam received his first casts, and after several weeks of new casts, his foot looked remarkably straighter. A few weeks later, he and Sulekha traveled to HRDC’s central campus in Banepa, an 8-hour ride by bus, for the tenotomy.
Today Sushavam’s feet are corrected and he’s able to fully participate in the activities and games he always longed to play.
“Even before getting treatment he was interested in sports,” says Sulekha, “and now I see that he’s much faster than the other kids, and much more excited by ball games and such.”
“I will kick the ball first” he says determinedly as he plays with his older cousins. “I will kick first! I will kick first!” And he does – hard and fast, with the vigor of a boy who has finally been set free.
Sulekha’s life has also changed in big ways. She no longer worries about going out or what neighbors will say. Even her in-laws are proud to show off Sushavam’s transformation.
“My father-in-law used to take off my son’s shoe and show it to each of those who said the treatment wouldn’t be successful,” she recalls. “The villagers do not say anything nowadays.”
Bharati still visits the family regularly to check on Sushavam’s progress and make sure he’s doing the foot stretches and exercises prescribed to help prevent relapse. When she visits she brings books, pencils, and workbooks, along with toys and treats. Bharati’s interest in Sushavam’s future is evident in the easy way she jokes with him and the bright smile on her face as she watches him race away.
“If mom forgets then you remind her, okay?” she calls to his receding figure. “Tell her it is time for your stretches!”
Like many parents who witness the transformative power of the Ponseti method, Sulekha is encouraging her son to become a doctor and help other children the same way the staff at HRDC helped him. Sushavam is off to a great start, doing well in school and already counting numbers and writing letters, even though he’s only four.
Sulekha, a talented seamstress, pedals her manual sewing machine with smooth, even foot motions and reflects on all that she and Sushavam have been through. As she feeds the cloth through, she shares her hopes for the future—for her son, but also for others born with clubfoot in Nepal. “When I see children [with clubfoot] in my neighborhood, I tell them that it is curable, thanks to HRDC. Sushavam’s treatment was more successful than I ever imagined.