Second First Steps: A Club Foot Journey

My son Spencer took his first steps at the age of 4.

It happened when he was in a physical therapy session. He left the arms of his therapist and took four wobbly, glorious steps. I sobbed as I watched from the window in the gym’s door.

The doctor in the NICU said he’d never walk.

Spencer is a determined, strong-willed little boy who has defied many odds, most likely out of spite. He was born with Say Barber Biesecker Syndrome, which is also referred to as Ohdo syndrome, a rare genetic condition that can be characterized by intellectual and developmental delays, hypotonia (low muscle tone), heart defects, hearing loss, hypothyroidism, muscle and joint anomalies, and distinct facial features. Spencer was also born with a clubbed left foot, which was the only medical issue we knew about before he was born.

After he took those first steps, he never stopped.

Interventions for Clubbed Foot

Out of all Spencer’s numerous medical issues, his clubbed foot was the most annoying of them all. We were lucky enough to live close to one of the best clubbed foot specialists in the country and we started treatment early.

Club foot is often treated by casting and bracing. For Spencer, this meant the position of his foot was changed by getting a new cast once a week for six weeks. Then he had a tenotomy where his Achilles tendon was cut, followed by a single cast for three weeks.

After he was finished with casting, he moved on to bracing. He wore a special brace designed to keep his foot in the correct position, which is basically two shoes hooked and separated by a metal bar. He was in the “boots and bar” FOREVER. At first, he had to wear the brace 23 hours a day, which slowly transitioned to wearing at night until he was six years old. During the day, when he wasn’t wearing his brace, he wore AFOs, another type of orthotic created to help support his muscles and joints.

Spencer has had the same physical therapist since he was 18 months old. He hates her with a fiery passion from the pit of his soul. He grumps and yells every time he sees her, even after eight years, because she makes him work. Despite his feelings, his therapist likes Spencer very much and is one of his biggest cheerleaders. She has worked relentlessly to help him gain independence and has celebrated with us many times over the years.

Club Foot Relapse

We always knew that a relapse of his clubbed foot could happen, but after 7 years we thought we were in the clear. One day, I noticed he was limping a bit. He had a blister from his AFO, which shouldn’t happen. I called his orthotist, the specialist who makes his AFOs, thinking an adjustment needed to be made. A couple days later, when he couldn’t put his heel flat on the floor, I knew his foot had relapsed.

We were at his orthopedic doctor’s office within a few days. I figured he was in for another tendon release and a few weeks in a cast. I was very wrong. Not only did he need a tendon release, he also needed a tendon transfer, which is a common procedure with children with clubbed foot. This meant eight weeks in cast, four of which he couldn’t bear weight on the leg at all.

Then his doctor floored me when he said Spencer’s other foot, which had never needed anything done to it, needed a tendon release too. If we did the surgeries at the same time, which was probably the best option for Spencer, he would have both legs in casts for the entire summer. He would have to learn to walk again, would have even more muscle weakness, and he would have a long road ahead of him.

I had an ugly cry in the car for about twenty minutes after the appointment. All those therapy appointments, the casting, the braces, the doctor appointments, the progress, the time and emotions invested. All this seemed gone in just an instant.

Hesitations

I agonized over this surgery because it terrified me. How do you take away a child’s independence that he worked so hard to achieve? I started to cancel it a couple times. His foot was functional, at least for now. I was worried that he would never get back to baseline. His PT, the same one who has worked with him so closely, was worried he would never walk again and tried to talk us out of it. This one absolutely devastated us. All of us.

Ultimately, I used the same method I use to make any medical decision — I trusted my gut. My husband affirmed that we were doing the right thing. He said, “They said he’d never walk. He’ll prove them wrong once. He’ll do it again.”

Recovery

Spencer’s surgery went well. Once we got home, the casts didn’t phase him. He tried to weight bear on his legs, despite having casts on, and it felt strange when we had to yell at him not to. His casts were switched out after four weeks to check his incisions and for him to get casted for new AFOs, which he’d wear for 23 hours a day after his final casts were removed.

I saw his feet for the first time in a month, and they were beautiful. His clubbed foot leg was back to where it was supposed to be. His “good” foot was the straightest it’s ever been. He had his new casts put on and finally had permission to weight bear again. When we got home, I dug one of his old walkers out of the attic and wiped the years of dust off it. I wrapped Coban around the bottom of his casts for traction, and we practiced walking around the house.

I thought it would take him at least six months to take steps again and even longer to get back to baseline. Spencer had his casts off for a week when he took his second set of first steps. None of us imagined this was possible. We surprised his PT at his next session. At his next doctor’s appointment, I beamed when he showed everyone what he could do already. He was wobbly, but he quickly exceeded his baseline.

The surgery was absolutely the best choice for him. His gait is so much better and he walks with more ease. And sure, his feet might relapse, and he’ll have to do this all over again, but if so, he’ll take first steps again.

Rachel Nichols lives in Kentucky with her husband, her child with special needs, her child with unique needs that requires specialized knowledge, and then the child who appears to be neurotypical.