It Takes a Village for Clubfoot Treatment
They say it takes a village to raise a child, and the same is true for treating clubfoot – especially when the path to treatment is anything but straightforward. When Nora, 31, became a mother for the first time, it was her own little village that helped her navigate finding treatment for her son.
After an emergency C-section in a hospital near their home in Escuintla, Guatemala, attending nurses informed Nora that her son, Victor, had both clubfoot and glaucoma. She was advised to get his eyes checked immediately but told that his clubfoot wasn’t as urgent and could wait to be attended to after his first birthday. Without further guidance, she was released from the hospital and sent on her way.
Back home and alone with her new baby, Nora’s mind was a melting pot of emotions, fears, questions, and responsibilities. Why was her child born with clubfoot, and what did it mean for his future? What would other people say? Should she try to find treatment?
“I was sad and desperate,” she says, “I had no idea what do to.” Overloaded by important decisions and paralyzed by fear, she fell into depression and refused to accept that her son needed to see a doctor. When her family members called to check in, she told them that she and Victor were both just fine. She sent them photos and neglected to tell them about the clubfoot diagnosis, pretending that if she could ignore it, maybe it would just go away.
It was Nora’s sister-in-law, Olga, who noticed Victor’s little curved foot in the photo and began asking questions. She did her own investigation and, concerned, even showed the boy’s photo to a doctor. Convinced something was wrong, she began to persuade Nora that Victor’s foot needed attention.
“At first, she didn’t accept it and she said, ‘That’s how he was born, that’s how he’s going to live,’” Olga remembers. “She didn’t even want to take pictures of him. I told her that he’s her son, she doesn’t have to be ashamed of him.” Olga encouraged Nora to make the two-hour trip to visit her so they could talk more and work out a plan. Victor was just 12 days old when he and Nora arrived at Olga’s house. It was meant to be a short visit, but they ended up staying for the next eight months.
Living with Olga and her family, Nora and Victor found the village—the community—they desperately needed. With a house full of aunts, uncles, and cousins, Nora felt the emotional support that every new mother deserves, and Olga quickly became not only a source of encouragement for Nora, but an important grandmother figure to Victor.
Together, Nora and Olga set out on a long journey to find someone who could help Victor. At the local hospital, he was seen for his glaucoma, as well as clubfoot. Every Monday he received a new cast on his foot, then, it was up to the family to remove it the following Sunday, and then repeat the process again week after week. After twelve weeks of casts and a bit of physical therapy, the doctor said that Victor now needed to wear special shoes: shoes that would cost 1,500 quetzales (~USD$190) and were only available in a city four hours away. The doctor gave Nora a phone number to call to purchase the shoes, but every time she called, no one picked up. With the casting phase of treatment complete but no luck finding the special shoes, Nora and Olga again felt like they were navigating an unfamiliar path with no map.
Olga, however, was determined to get Victor the shoes – and the care – he needed. Together they brought Victor to another facility in Técpan but were again sent home with only a phone number. This time, though, someone answered. It was FUNDAL, one of MiracleFeet’s two partners in Guatemala. They made an appointment for Victor at the clinic near Guatemala City for 7:00 am the next morning. At 4:30 am, Olga, Nora, and Victor were already outside the door waiting.
At FUNDAL, Nora and Olga finally found the clubfoot team they’d been searching for. The search had taken so long though that Victor’s feet relapsed and he needed to start treatment from scratch. This news exasperated Nora. She felt like they were going in circles and was tired of watching Victor suffer through cast after cast with no results. But Olga wasn’t about to abandon their mission.
“We came back home and we all got together to talk about it. We decided we were going to do the treatment. We said this is for the good of the baby – he has to move forward.”
With the whole family behind them, Nora and Olga began again with Victor’s treatment, now at FUNDAL, traveling on the bus two hours each way for every clinic visit. Six casts and one tenotomy later, Victor’s feet were again straight and he began the bracing phase to ensure they stayed that way. Today, he still wears the brace during nap time and at night, and, with support from his family and the FUNDAL team, he is thriving. In the care of this little village, Nora now allows herself to dream about her son’s future. “I want him to be happy, to grow, to study and to achieve everything he sets out to do, to always support him,” she says, “I want to see him conquer the world.”
At one year old, Victor is just learning to walk, eager to begin exploring the world on his little feet and to catch up with his older cousins. On nice days, Olga spreads a blanket on the hillside outside her home, where Victor likes to sit and feel the grass between his toes. Surrounded by so many people who would go to the ends of the earth for him, the little boy’s dimpled grin says it all. “We’re all here,” Olga says, “Here, he is loved by everyone.”