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News Thursday, March 09, 2017

Alex receives life-changing care for conditions related to arthrogryposis

Orthopaedic team considers patients' best interest and goals

Amy and Danny of Palmdale, California, adopted their son Alex from Russia when he was 8 years old. Alex was born with arthrogryposis, which is characterized by multiple joint contractures (stiff joints).

Alex’s arms and legs were both severely contracted. He was unable to move his fingers or elbows, and his feet were very curved. Alex was in constant pain and his ability to move was greatly reduced by the condition. The family already had some involvement with Shriners Hospitals for Children — Los Angeles and its expert care in pediatric orthopaedics, before they adopted Alex.

Their 18-year-old son, Ryan, received care for osteogenesis imperfecta at the hospital and they had been very pleased with his treatment. During one of Ryan’s hospital visits, Amy was able to make an appointment for Alex with Kathryn Doughty, M.D., an orthopaedic surgeon. After a careful examination, Dr. Doughty offered Alex, then 11 years old, three possible options for the care of his feet.

His first option was to take no action. The second option was to perform surgery to attempt to straighten Alex’s feet, but that approach would not alleviate his pain. The third option was to amputate both legs at the knee and fit Alex with prostheses. Alex chose option three. “My goal as an orthopaedic surgeon is to help people live their lives as actively as possible,” said Dr. Doughty. “Alex’s amazing self-confidence and motivation convinced me to explore what may seem like an extreme option.”

Staff at Shriners Hospitals for Children always work to provide care that is in the best interest of the patients, taking their concerns and goals into consideration. So, over several months, Dr. Doughty consulted with other surgeons, caseworkers, prosthetists and Alex’s family to discuss Alex’s decision for amputation. Everyone agreed that an elective amputation was the best long-term option for him.

Alex’s double leg amputation finally relieved his pain. His strength and balance also improved remarkably with the use of the prostheses and occupational therapy he received from the Los Angeles Shriners Hospital. “He has so much more independence,” said Amy. “Alex doesn’t think there is anything in this world he can’t do.” Today, Alex is 15 years old and able to walk on his own. He spends his free time zooming around on his skateboard and playing outside with his dog and horses.