Standing Firmly on Two Feet
At 5 years old, Tyler Kiskis is a bundle of energy, a little spark-plug with tossled brown hair and an impish grin who revels in the things that most 5-year-old boys do: baseball and soccer, chasing the family Labrador, jumping through a water sprinkler in the front yard of his family's Pasadena home.
His parents, Vicky and Dave, revel in his enthusiasm, grateful that their son can do all those things that most parents take for granted. To get to this place, Tyler has overcome incredible challenges.
Tyler was born with a congenital limb-length discrepancy of his right tibia and abnormal positioning of his ankle joint. By the age of 4, his right leg measured a full 5 centimeters shorter than his left, and his foot curved in the shape of a kidney bean. "It got to the point where he was literally walking on his ankle," his mother says.
The options for Tyler were a life-time of braces and shoe lifts, amputation of the leg, or a dramatic limb-lengthening surgery that involves breaking the bone and pulling the two ends apart through an apparatus that promotes regeneration of bone and tissue in between. The "external fixator" attaches to the bone by means of pins and screws that, when turned four times a day, provided for regrowth of approximately one inch per month.
In the minds of Tyler's parents, there was only one option: surgery. Last March, he underwent the grueling eight-hour procedure. Within a few days, he was transferred to Kennedy Krieger's Specialized Transition Program (STP), where he began the first of many months of rehabilitation. Though conditions like Tyler's are very rare, Kennedy Krieger treats about 25 patients like him per year, many of whom come from across the country for its unique, interdisciplinary services.
"Our physical therapists have a lot of experience with patients like Tyler, so they are very successful in achieving the results the surgeons anticipate," says Joan Carney, director of the STP. "They know how to help patients reach the limits they need to remain functional throughout the process, and they know how to recognize any complications and have them treated immediately by the surgeons."
Tyler underwent a strenuous daily regimen of physical therapy that involved aggressive stretching of the muscles that extend his knee, hamstrings and toes. This was done on land and in a swimming pool, where his buoyancy took the weight and tension off his legs, providing for greater stretching and range of motion. The therapy was painful "the nights were very, very hard," Mrs. Kiskis recalls that days at home were spent repeating that day's exercises and cleaning and dressing Tyler's wounds. Children who are in the STP's day program also have access to other specialists, including nurses and psychologists, who provide pain management, and occupational therapists, who assist in activities of daily living, such as dressing and bathing.
By June, Tyler's bone growth was progressing, and his physical therapy was reduced to three times a week. By September, a full-leg cast would replace the external fixator, and six weeks later, he was cast-free. Today, "he's playing basketball, baseball and can run just about as fast as any other kid his age," his mother says.
Tyler's right leg will continue to grow slower than his left, and he will undergo another limb lengthening procedure in the next few years. Tyler knows this, but it might as well be an eternity to a little boy as busy as he.
"The therapists at Kennedy Krieger are just great," Mrs. Kiskis says. "They stay upbeat and optimistic, because they can see through the pain and know that, with every stretch, the quality of these kids' lives gets so much better."