Cohen’s clubfoot care is worth the drive

Cohen is making great progress since being born with bilateral clubfoot.

Rachel Lumley and her fiancé, Sean Bisbal, got quite a shock at the 20-week ultrasound for their second child. Their baby boy, Cohen, had bilateral clubfoot – meaning both feet were affected.

“I had never heard of clubfoot before,” Rachel said. “Sean and I don’t have a family history of clubfoot. The odds of having a baby with clubfoot are 1 in 1,000 – so we were really shocked to find out.”

Initial treatment

Rachel did what most people do when looking for health information: She went online. She found a Facebook support group for parents whose kids have clubfoot. “We live in Ellwood City, Pennsylvania,” she said. “We went with a close-to-home facility that was set up through my OB/GYN.”

Casting and bracing – called the Ponseti Method – are the standard methods of clubfoot treatment. Casting gently and gradually moves the foot to the correct position, and bracing keeps the foot in the right spot. “Cohen got his first cast at 2 weeks old. He had a series of 12 casts due to many of the casts slipping – and he would scream and cry every time,” Rachel said. “It was a soft cast, so I thought maybe it was the material that bothered him.”

Switching to Akron Children’s

After those 12 casts, Rachel posted pictures of Cohen’s feet on the support group page. Many members warned that his feet weren’t corrected, and he wasn’t ready for the surgery the doctor recommended. “That’s when I knew we needed to make the switch,” she said. “The group mentioned a red light/green light list, which is a document with parent reviews of clubfoot doctors all over the world. They praised Dr. Mark Adamczyk at Akron Children’s.

“Even though he is a 90-minute drive each way, he came so highly recommended that it was worth the drive,” Rachel continued. “There are so many cases I have read that are similar to Cohen’s, where children’s feet are made complex or are not fully corrected by doctors who are not skilled in the Ponseti method. Finding Dr. Adamczyk has been the biggest blessing for us. We’re happy that we’re able to travel to get the care Cohen needs.”

Dr. Adamczyk is a pediatric orthopedic surgeon and director of the Akron Children’s Clubfoot Clinic. His first recommendation was for Cohen to take a break from casting. “His skin was too irritated, and I needed the swelling to go down before we could even try to start casting him,” he said. “We then went through a series of 4 casts for Cohen that we changed every week.”

Dr. Adamczyk (right) and Paul Ponikvar, orthopedic technician supervisor, put a new cast on Cohen.

Improved casting experience

Cohen’s casting experience at Akron Children’s went well. “He actually fell asleep during a couple of the castings, which is surprising given how much he cried before,” Rachel said. “Dr. Adamczyk and his team are great – so kind and considerate. They use plaster casts, and because Cohen needed casts on both feet, the process to get new casts would take about an hour total. They have sound machines in the room and a little projector with images on the ceiling for Cohen to watch. It was a really calming environment.”

Rachel also commended Dr. Adamczyk for a good bedside manner, taking time to explain everything to Rachel and Sean. “I try to think of what I would want to know and consider the parents’ position dealing with a newborn – or an older child depending on the age and problem for which they come in – when I explain things and make treatment recommendations,” Dr. Adamczyk said. “I’ve been there twice before in raising my 2 sons.”

Cohen and his casts with parents, Rachel and Sean, and big brother, Lincoln.

Treatment continues with surgical procedure

After Cohen progressed with the casts, Dr. Adamczyk recommended a “tenotomy.” It’s a procedure within the Ponseti method. “About 90% of kids need it to complete the correction of their clubfoot. Cohen definitely needed it,” Dr. Adamczyk shared. “The tenotomy is completed with a very small incision over the Achilles tendon that divides the Achilles completely and stretches it to a longer length. This allows the patient’s foot to be placed in its final position that allows the ankle to flex upward.”

Not only did Rachel and Sean appreciate the tenotomy that will give Cohen a better outcome, but it was an outpatient procedure that didn’t require anesthesia. “He had the procedure in an exam room, not an operating room,” Rachel recalled. “He got local numbing anesthetic in the area, and then they put him in a cast to wear for 3 weeks. The whole visit only took 90 minutes.”

Cohen has moved to the final stage of clubfoot care: bracing with special boots connected by a horizontal bar. “Cohen is wearing the boots and bar for 23 hours a day until March. We’ll gradually decrease the time after that. Eventually, he’ll only wear them at nighttime until he’s 4 or 5 years old.”

Cohen has transitioned to the “boots and bar” portion of his clubfoot care.

Building a following in western Pennsylvania

From the Facebook support group to word-of-mouth recommendations, Dr. Adamczyk and Akron Children’s are gaining traction east of the Ohio border.

“I’m humbled these Pennsylvania families are willing to make the drive to Akron, so I can help these kids out and get them on the right track for the rest of their lives,” he shared. “I’m very happy to be able to carry on Dr Ponseti’s legacy of clubfoot treatment for the kids in our region.”