The 5%, Part 2: A Family's Perspective on Complex Clubfoot, Ten Years Later
For 95% of children born with clubfoot, a series of 6-8 casts followed by a brace yields lasting results—and those are the stories we usually tell. But about 5% require long-term care.
After having four children, Solange had no way of knowing the changes to her life and her family dynamic that would follow the birth of her youngest son, João Paulo.
“We have a child with a disability who requires differentiated care,” she explains. “In that sense, it changed the entire family dynamic.”
Solange found out just after delivery that João Paulo had unilateral clubfoot. His left foot was severely turned in, almost backwards. She immediately thought of a former neighbor who, even though he was a teenager, was carried around by his father because he couldn’t walk.
“Wow, congenital clubfoot. What now?”
“My kid won’t be able to walk. He won’t be able to go to school and do things,” Solange remembers worrying. The fear and realization that there was a chance João Paulo would never develop full mobility propelled her and her husband to seek treatment. Eventually, they found Dr. Laura Ferreira at the University Hospital of São Paulo.
“I was very worried at first, because I had seen children who could not walk because of this condition. Dr. Laura told us that there was a way to manage it,” Solange remembers. At 14 days old João Paulo had his first appointment and began the Ponseti treatment process: casting, a tenotomy, and bracing (which Solange refers to as “boots”).
Over time, though, his prognosis and course of treatment deviated from what the majority of patients experience: João Paulo does have some pain, has intermittently required additional casts, and still wears the brace for extended periods—but he is nonetheless very active.
As Dr. Ferreira explained to Solange, João’s foot has a tendency to relapse. This means he must continue wearing the brace for longer than most children or else his foot will turn back in. His treatment has also required surgery.“ He never stopped wearing the boots,” says Solange emphatically. “It was never recommended to stop wearing them. I don’t know how long it will last, but during this period in his growth he ought to wear the boots.”
“He manages to adapt. He doesn’t sit back whining.”
Spending long hours off his feet ignited a love of drawing. João Paulo spends hours watching and copying techniques from instructional videos and he wants to be an illustrator one day, with an art shop of his own.
As João Paulo has gotten older, the whole family has adapted, finding new seated activities to do together. They play card games together, and Solange taught him to weave on a little square loom. But with four older siblings, João Paulo isn’t inclined to sit still for long or let his brace get in the way of his autonomy.
João Paulo is now nine years old with a strong desire for an independent and active life. Solange understands and wants this for him as well, but also insists he continue wearing the brace, even if it’s inconvenient or uncomfortable, so that he can move forward without the constant fear of relapse.
“I was afraid that he wouldn’t have a normal life. That he would, I don’t know, stop doing childhood things, or even not manage to do things in his adult life. If he hadn’t gone through the treatment, he wouldn’t be able to do many things. I am sure of that.”
Solange’s advice for other parents: “jump right into treatment, follow the guidelines and do everything you can, your child will have a healthy life and clubfoot doesn’t have to impose any obstacles at all.”