Cooper the Trouper: On a Mission to Mobilize

Cooper the Trouper: On a Mission to Mobilize

Previously published in Rite Up, 2024 – Issue 3.

by Kristi Shewmaker

“I can’t wait for you to see the little tricycle up in the ceiling,” BJ said to his wife, Ashley, when they arrived at Scottish Rite for Children in January 2023. Ashley and BJ Burton drove from their home in College Station with their 2-month-old son Cooper to see Scott Oishi, M.D., FACS, hand surgeon and director of the Center for Excellence in Hand.

BJ was referring to the “Flying Machine,” a giant dirigible, or airship, powered by aviators and teddy bears that hangs from the ceiling in the Atrium of Scottish Rite’s Dallas campus. The “Flying Machine” has delighted children and families since 1978. It represents mobility for the patients of Scottish Rite. BJ remembered it fondly from his time at the hospital as a child when he received treatment for a rare form of congenital arthrogryposis, a condition that affects the joints and causes contractures that limit movement. His case affected his hands and feet.

When Ashley was 30 weeks pregnant, a 4D ultrasound revealed that Cooper’s hands were, in BJ’s words, “drifting.” Ulnar drift is a hand deformity that occurs when the joints contract and cause the fingers to bend toward the pinky finger, a symptom of arthrogryposis. “We noticed his hands first, so we started to prepare ourselves,” BJ says. When Cooper was born, BJ saw that his feet were deformed as well. “I knew they weren’t clubfeet because I had clubfeet,” he says. “The people at the hospital didn’t know, and they were spitting out all kinds of disheartening things. Obviously, that’s not what you want to hear less than 24 hours into the birth of your child.”

At Scottish Rite, where BJ had found hope years ago, Dr. Oishi evaluated Cooper and confirmed a diagnosis of arthrogryposis. The Burtons learned that when Dr. Oishi came to Scottish Rite, his mentor was hand surgeon Marybeth Ezaki, M.D., who was BJ’s physician when he was a child. Scottish Rite for Children was the first pediatric orthopedic facility in the United States to employ full-time hand surgeons. “It was really comforting for me,” BJ says. “Knowing that I got great care at Scottish Rite, I knew that care would transition to Cooper as well.”

For Cooper’s hands, Dr. Oishi prescribed splints to wear at night and at nap time to stretch his fingers and keep his thumbs from tucking into his palms. For his feet, Dr. Oishi referred the family to Anthony I. Riccio, M.D., pediatric orthopedic surgeon and director of the Center for Excellence in Foot.

Dr. Riccio diagnosed Cooper with congenital vertical talus, a rare, complex foot deformity that causes the sole of a child’s foot to flex in a convex position, forming a rocker-bottom appearance. A bone in the ankle, the talus, connects the lower leg bone, or tibia, to the foot. “The talus is normally positioned at about a 90 degree angle to the tibia, but in a congenital vertical talus, the talus points straight down,” Dr. Riccio says. “Because the talus is the central and most important bone in the ankle and foot, the bones around it fold up on either side, resulting in a V-shaped foot.” Affecting 1 in 10,000 births, the condition can occur in children with no other conditions, as well as those who have a variety of syndromes, like arthrogryposis. “We had never heard of vertical talus,” BJ says. “I knew that Cooper would face challenges, and I was torn apart because I felt responsible.”

“I was terrified that he wasn’t going to be able to walk,” Ashley says, “but I remember Dr. Riccio saying, ‘He will be able to walk. He will be able to play baseball,’ and that meant a lot to us.” The Burtons are a baseball family. BJ coaches varsity at A&M Consolidated, a local high school.

Cooper would need surgery on both feet, but first, Dr. Riccio prepared him for the operation by gently stretching and realigning his feet through manual manipulation and casting. For two months, the Burtons drove back and forth from College Station every week as Cooper received a series of seven casts. When Cooper was 6 months old, he underwent surgery. Dr. Riccio ensured that his joint was aligned, stabilized it with a pin and then released his Achilles tendon, which brought his foot into the correct position. Cooper came out of surgery with a long cast on each leg. After six weeks, the casts were removed, and he wore a boots and bar brace, which is comprised of special shoes, or boots, that are connected by a metal bar that kept his feet in the corrected position. He wore the brace 23 hours a day until he pulled up to stand when he was 10 months old.

To promote walking, Cooper transitioned to wearing an ankle foot orthosis (AFO) on each foot during the day and the boots and bar at night. “He started walking along the couch and pushing his little push toy,” Ashley says. And then, at 14 months old, Cooper walked on his own. “We thought he was going to be severely behind developmentally, but he’s right on track,” she says.

Today, Cooper is walking all over the place. “Nobody would ever guess he went through bilateral foot surgery,” BJ says. “He’s already hitting a ball off a tee and running to the front door like it’s a base, and then he comes back with a huge smile on his face!”

Dr. Riccio says, “The outcome is exactly what I hoped it would be — it’s a perfectly aligned foot.” Cooper will continue to wear the AFOs as he grows and the boots and bar at night until he is 4. Because the condition can recur, Dr. Riccio will monitor Cooper’s feet as he gets older, and Dr. Oishi will continue to treat his hands. “We definitely found the best of the best at Scottish Rite for everything,” Ashley says. BJ concurs, “The moment we got there, we just knew that this was the place we were supposed to be.”

Nico is Spreading His Wings!

Nico is Spreading His Wings!

3-year-old Nico, of Mission, and his family travel more than 500 miles to receive treatment at Scottish Rite for Children. “We make that effort to come this far, because it’s worth our drive,” Nico’s mom, Mary says. Nico was diagnosed at birth with clubfoot and arthrogryposis — a rare condition that causes stiff joints. Mary found comfort in the arthrogryposis support groups she found online. Her conversations with other families led her to schedule an appointment for Nico at Scottish Rite.

Nico receives care from our experts in hand, clubfoot, occupational therapy and orthotics. Even when he’s facing a challenge, Nico’s joyful personality shines. He is always greeting and waving at everyone he meets at Scottish Rite. “I think Nico is going to grow up to be an entertainer,” Mary says. “He is such a social butterfly!” 
When surgery was proposed as part of Nico’s treatment plan, Mary felt assured. “We were always confident about surgery,” Mary says. “The outcomes our care team told us were always what we received.” Nico has had two surgeries to combat his arthrogryposis: an Achilles lengthening surgery on both legs in 2022 and a wrist surgery in 2023. 

Nico has made remarkable progress, and there is no stopping him now! Mary says she is thankful to Dr. Scott Oishi and Dr. Anthony Riccio for their attentive care. With their help, Nico can now walk by himself. He’s also working with occupational therapists Amy Sitabkhan and Grace Evansco to develop more independence by learning daily tasks such as eating and clothing himself. “I wish I could take Scottish Rite’s occupational therapists back home with us,” Mary says. “Everyone is so helpful, and we are so blessed.”

We like to say all our patients become part of the Scottish Rite family. For Nico, this is especially true. He and his family are now part of our Hand in Hand support group, and it’s been so fun to watch Nico come out of his shell. We look forward to seeing everything he accomplishes in the future!

 

Do you have a story? We want to hear it! Share your story with us.