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News Monday, January 30, 2017

Learn about the limb-lengthening process

The Maine family shares their story

When Connor Maine was born four weeks early weighing over 7 pounds, doctors realized something was wrong. In utero, he weighed 4 pounds. Connor had a limb length discrepancy; his right leg was five inches shorter than the left and doctors had been measuring his shorter leg. Parents Meagan and Andy Maine were left wondering what to do when a doctor at Mercy Hospital St. Louis suggested contacting Shriners Hospitals for Children.

Connor had his first appointment at 6 months of age, while doctors monitored his progress to see how much his leg would grow. Every six months he would receive a new shoe lift and AFO (ankle-foot orthosis) braces. When Connor turned 5, Shriners Hospital Chief of Staff Perry Schoenecker, M.D., suggested a few options for continuing care to his parents. One option was amputating his shorter leg, but Dr. Schoenecker suggested a lengthening process, which would involve multiple surgeries and external fixator spatial frames Connor would have to wear for months at a time. The Maine’s chose the latter, hoping to provide Connor with the best option, despite the fact that much of his childhood would require hospital visits. “We are blessed to have Shriners Hospital so close,” said Meagan, a resident of the St. Louis suburb Wentzville. “The local Shriners would even pay our gas when we had to come to the hospital multiple times per week.”

Dr. Schoenecker performed a hip surgery on Connor in January 2013. After that surgery, Connor began seeing J. Eric Gordon, M.D., for the leg lengthening process. He had another surgery on his femur and received his first fixator frame that was surgically attached to his leg from his shin to his hip. After recovering from this lengthening, Connor received another frame that went from his shin to his knee. At age 9, he is finally finished with the frames and will now be free of constriction for a time, until his legs grow. In a few years he might have to endure another hip surgery and internal rod lengthening until both legs are completely even. Once both legs are even, doctors will perform a fusion surgery that will stop the growth of both legs.

Despite having to visit the hospital so often, Meagan often has a difficult time getting Connor to leave. “Connor absolutely loves coming here. They make it so much fun for him that he doesn’t want to go back home,” Meagan said. “They make childhood a part of their treatment.” In fact, Connor joined the patient ambassadors and has already given multiple speeches to the public and his peers about his care at the hospital. His dad even became a Shriner this past year, continuing the legacy of giving back to the wonderful organization that helped their family so much.