“I marvel at how much he’s able to do when I think back on where we started with his feet,” Allison Wolf says thankfully about her 4-year-old son Colton, whose list of favorite activities includes playing soccer, swimming, doing gymnastics and racing BMX bikes. “He’s a very active kid.”
Colton was born with clubfoot, a deformity of the positioning of the foot. With this condition, the foot points downward and twists inward toward the opposite leg rather than facing forward in a flat position. The affected foot is also likely to be stiff and rigid, causing walking to be painful, difficult and sometimes impossible.
Ironically for Colton, being active in so many activities is the positive result of treatment that kept his feet in a restricted position for much of his young life. Doctors suspect that clubfoot occurs during development in the womb, but its exact cause is unknown so underlying issues can’t be “fixed.” Instead, treatment centers on stretching muscles, ligaments and the tissues around the joint to improve the foot’s position and re-align the bones. This process, known as the Ponseti clubfoot casting method, involves a very specific sequence of leg casts followed by a bracing system (special shoes connected by a metal bar) that holds the foot’s new position in place and prevents positioning issues from recurring.
Making the best of it
Colton’s doctors discovered that both legs were affected at his 20-week ultrasound and planning for his care began before he was born. His treatment was overseen by Dr. Victoria Kuester, an orthopaedic surgeon who is part of a team of doctors and nurse practitioners at CHoR trained in the Ponseti method. “We knew what needed to be done, what to expect and what to be prepared for which was very helpful,” Allison recalls. “For Colton, the goal was to get the foot flat and ready for weight-bearing so there would be a good surface and a good anatomical position for walking.”
Colton was given his first toe-to-groin plaster casts when he was just nine days old. The younger the child is, the more flexible the muscles, ligaments and tissues usually are, according to Dr. Kuester, which is why treatment begins so early in life.
Allison is one of our occupational therapists and though she’s seen firsthand the life-changing benefits of the innovative treatments and expertise of our specialists with the children she’s worked with, taking her newborn son for his first cast was still a difficult moment as a parent. “You have this new sweet baby, our first child, and you’re taking him for restrictive casts and you know it’s going to change how you interact, how you dress and how you feed him,” she says. “It was August when Colton was born and the plaster cast is hot, it absorbs stains and it’s sticky. But you have to put your expectations aside and say: ‘Here’s where we are. This is what we have to do now for his future.’”
Colton wore this first sequence of casts for about five weeks. Each week he would come in for a new set placed in a position that turned his feet a little more in the correct direction. Once his feet were positioned correctly, he wore braces 23 hours a day for three months, then at night.
The Achilles tendon (joins the heel bone to the calf muscle) tends to be less flexible in children with clubfoot and, in some cases, this tightness can be corrected with the final cast in the sequence. For most, however, a minor surgical procedure is needed to release (or lengthen) the tendon so it can stretch and move more easily. Initially the former seemed to be the case for Colton, but despite wearing the braces as instructed, his tendons tightened up again so he had the surgery when he was eight months old. Small cuts were made on his tendons during the procedure and another specific casting sequence followed. “These casts hold the foot in a completely stretched out position which allows the Achilles tendon to heal in that position,” Dr. Kuester explains about the lengthening process.
Colton’s resiliency is what Allison will remember most about his first year of life and she says his attitude about the casts relieved any initial hesitation: “Colton really did not care. He was content and not slowed down a bit. He learned to army crawl, roll, sit up and do the things he needed to do with the casts on. It’s like he knew this is where we are and made the best of it.”
And Colton really did make the best of it. Despite the casts and braces, he kept up with developmentally appropriate skills and was even able to start walking without pain at 14 months.
Every step of the way
Colton sees Dr. Kuester every six months to make sure his feet positioning issues are not recurring and that his Achilles tendons aren’t getting tighter. Around the time he turned three, they noticed he was walking on his toes, a common type of recurrence, and Colton once again underwent a cast sequence; this time on his lower legs. These casts stretched his foot, ankle and calf muscles to correct his gait (walking pattern) to more of a typical heel-to-toe motion. He also began physical therapy to work on strengthening, stretching and coordination related to walking, balance and gross motor skills.
“As a therapist I know the body parts and interactions on a clinical level which can be hard when dealing with such a personal subject,” Allison remarks. “Throughout this process, Dr. Kuester was very reassuring. And Lisa Bebko, Colton’s physical therapist, was very open to feedback and dialogue about what I observed at home which was great. We felt confident and comfortable throughout that what we were doing would lead to the best possible outcome.”
While one best possible outcome is seeing Colton able to run, play and participate in the many activities he enjoys, another is providing a care experience that’s viewed as a positive by our young patients, even if the path is difficult at times. Earlier this year, Colton dressed as a doctor for Career Day at his school and told everyone he plans to work at CHoR someday. “It’s a reflection of his care providers and how they interacted to care for him,” Allison says about Colton’s medical journey. “For a four-year-old to choose that on his own speaks volumes about the care he received.”