What About the 5%? Two Stories of 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.
Seeing Guilherme play soccer on an invitation-only team in São Paulo, Brazil, no one would know he was born with clubfoot, not to mention a rarer form that makes his feet more prone to relapse. For his mother, Alessandra, seeing him play is a victory, and a relief.
When he was born via c-section, the attending doctor screamed. “Not even she had any idea what it was,” remembers Alessandra.
“We were terrified. Clubfoot was something that we knew nothing about. We had no idea what it was or what it meant. We were sent home without exactly knowing what was wrong with our child. Even at the hospital, they didn’t clarify anything. They gave us no proper course of action.”
Like many parents, Alessandra turned to the internet for answers. After significant research she found a private clinic advertising treatment. But when she learned the cost, she was devastated; each appointment was 750 reais (approximately $143 USD), and appointments were weekly for an untold number of months.
“Even with both me and my husband working, we couldn’t afford it.”
Alessandra eventually found Dr. Laura Ferreira, an orthopedic surgeon at the University of São Paulo, who learned the Ponseti treatment method from Dr. Ponseti himself. When Guilherme was just 19 days-old, they attended their first appointment.
Dr. Ferreira explained that, most likely, treatment would be complete by the time Guilherme turned five, and her clinic (MiracleFeet’s first-ever program partner, beginning in 2010) offered this care at no cost.
But from there, things didn’t progress as expected. Guilherme has relapsed several times and he is still undergoing treatment, wearing the brace intermittently and doing physical therapy daily. Although the bones in his feet were corrected during the casting stage of treatment, his tendons are not following the same growth pace as his feet, increasing the risk of relapse as he grows.
“Until he stops growing, we have to be watchful,” says Alessandra, “and pay attention to the way that he walks and how he steps. Until he’s finished growing, we can’t stop looking after his condition.”
Even with the limitations of wearing a cast or a brace, Guilherme’s parents encouraged him to be active. They introduced him to skateboarding when he was two years old, then swimming, and biking, and eventually soccer.
Alessandra and her husband try to minimize any stigma Guilherme perceives, but it’s a constant struggle.
“We accept him the way he is. But society doesn’t. That’s our biggest fear,” she admits. “People carry a lot of prejudice. People find it strange, or ugly, or weird. People would ask me if I have been beating my son. They look at the boots and say, ‘wow, you got him those shoes to constrain his feet?’ I realize people react this way due to a lack of information, but it’s traumatic both for the kid and the family who has to hear to it.”
When Alessandra went back to work at her salon just a month after giving birth, she brought Guilherme with her—both of his legs in casts. She made a special room for him so she could watch him while she worked. “If I didn’t keep working, I would not have been able to provide him with the support he needed,” she says. “And I had no one to leave him with, so I worked with him by my side.”
She adjusted her work schedule to accommodate Guilherme’s weekly appointments at the clinic, a 45-minute drive when Alessandra could borrow a car—but usually an indirect trip involving three bus changes and a subway ride. To make it to their appointments on time, they would leave at 5:00 in the morning and wouldn’t return home until late afternoon.
And then there are the logistics of caring for a baby in a cast, or a brace, or with limited mobility. Bathing, dressing, donning footwear, are all more challenging.
“We changed our routine completely, and our entire family structure,” she admits. “I thought I’d have a child and go back to work, that my son would be walking and running around. I never thought I’d have to make a full day available only for treatments.”
Managing Guilherme’s ongoing treatments, while running a small business of her own, has been a journey of hidden sacrifices and rewards.
“Today, when I look at our situation, I see that this is a small price to pay. I can only be thankful.”
Alessandra’s advice to other parents: “You have to be strong, don’t give up. No matter how difficult it might seem, do not give up. Because it’s worth it.”