Solange and João Paulo
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?”
Clubfoot is never what a mother wants or envisions for her child, and the role of constant, long-term caregiver isn’t one she expects to play. The fear and realization that there was a chance João Paulo would never be able to walk propelled her and her husband to seek treatment. Eventually, they found treatment at the University Hospital of São Paulo with Dr. Laura Ferreira.
“Dr. Laura is a great doctor, quite wonderful,” says Solange with a smile. “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 cope with it and went ahead with the whole procedure.”
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”).
A few weeks later João Paulo had his tenotomy surgery—the same day that Solange was scheduled to present her final project for her social work degree.
“My whole family came to watch the presentation, and he was there in the audience,” she remembers. “There was a moment when he started crying, because I think he was hurting. My teacher, the student counselor, tried coddling him for a while, but he wouldn’t stop. So I kept looking at him while I presented, feeling very nervous about the entire situation. But I still managed to stay strong and get an A. Seeing him in the audience, even though he had just gone through surgery, made me confident that he was well on his way. I knew that he was being well taken care of, that Dr. Laura had done, and was still doing, an excellent job.”
As João Paulo got older, his active family adopted new, seated activities and adapted to a new way of life. They played card games together, Solange taught him to weave on a little square loom, and João Paulo developed a love of drawing. However, with four older siblings, João Paulo isn’t inclined to sit still or let his brace get in the way of his autonomy.
Solange tries to help him navigate while wearing his brace and tells him, “call me when you need to go to the bathroom. When you need something, you can call to me,” but recently, she says, he doesn’t. He does everything on his own, without help.
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.
“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.”
João Paulo is now nine years old with a strong desire for a normal, 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.
And he has made progress. After years of diligent care, his foot, although not fully corrected, is much improved.
“Today he can do things that I never imagined he would be able to do,” says Solange. “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 mothers in this situation: “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.”
“It is really about dedication. Dedication and perseverance.”