In sports, players look for ways to gain a competitive advantage. Extra practice, film study, training or better equipment are all ways to gain a fair advantage over your opponent. But what if you start at a disadvantage? For Ethan Johnson, his passion for hockey was stunted because he was unable to skate like his teammates.
At birth, Ethan was diagnosed with a bilateral clubfoot. Ethan underwent weekly casting, tenotomy, then used ponseti shoes and a rod to correct his legs. But after 15 months, Ethan still couldn’t get up. This led to parents Elliot and Sarah Johnson meeting a specialist at Gillette Childrens Specialty Healthcare. After meeting Dr. Stephen Sundberg, a pediatric orthopedic surgeon, the doctor explained that it was not clubfoot as previously believed, but arthrogryposis. Arthrogryposis is a rare condition in which the joints tighten, causing them to bend or flex, limiting movement.
Arthrogryposis is a difficult diagnosis for a family to get in the sense that the picture of what the future will hold isn’t always complete or clear from the outset, Sundberg said. Rare pediatric medical conditions often present a unique challenge for each patient, but at Gillette, I hope our families will feel reassured knowing that many conditions that would be rare in other healthcare facilities are not always rare for us. Treating many of these conditions is exactly what we specialize in. Arthrogryposis is not a progressive condition, so Ethans’ final outcome looked very positive, but he would need surgery to help him move forward.
As Ethan got older, he started playing sports with other kids his age. Ethan tried a variety of sports and found that he liked hockey. But as the workouts and games progressed, Sarah found that Ethan was having a hard time keeping up with his friends on the ice.
He had trouble skating because his foot turned, so he skated on the outside of his blades, Sarah said.
During one of Ethans’ physical therapy sessions, the conversation turned to playing Ethans on the ice.
He saw Jasey Olsen at Lake Region Healthcare for physical therapy, Sarah said. After talking, Sarah found out that Olsen was a girls’ hockey coach and asked a few questions about Ethan’s skating.
She told me that with how he walks on the outside of his feet, if he skates that way too, hell can never get a lift off the ice to skate properly, Sarah said.
It was then that they decided they would contact Gillette Childrens Specialty Healthcare in Alexandria and make an appointment with Dr. Andrea Paulson and orthopedic instrument maker Ross Huebner. Paulson was a former college hockey player, while Huebner also played hockey in his youth. The two met with the Johnsons and devised a plan to help Ethans skate.
Previously, Ethan wore ankle foot orthoses (AFO) to facilitate his movement. AFO is usually adapted to be worn in a shoe. Huebner remembered what it was like to wear hockey skates and how tight they can be. After getting a bigger shoe to fit a wedge on the inside, Huebner created an external brace to place on the outside of the skates while Ethan wore them.
After four appointments and in the space of more than six weeks, Ethan received his braces. They are the first kind that Huebner made.
In a short time the game and the hockey fun of Ethans improved. After an initial struggle, Ethan went to the rink and practiced with a walker. But after a while, Ethan put the walker aside and started skating without it.
He can push off on the ice, he can now skate on one foot, which he couldn’t before. He’s much more confident, Sarah said.
Recently, Sarah’s brother, Ethan and Ethans, Reid, traveled to Target Field to represent Gillette kids to make the honorary first run at the Minnesota Twins Sunday home games throughout the season. Normally, Ethan would have gone to the game to run in front of a crowd, but because of COVID-19, six kids and their families were invited to film and show their runs around the base blocks on the Jumbotron. Ethan’s run will be shown in the April 25 game as the Twins face the Pirates at 1:10 PM