There aren't any specific rules governing the limb-lengthening practice because each one is so unique, leaving the number and duration of the procedures up to individual doctors. This leads to a host of unnecessary operations, Hootnick says. Surgeons are apt to do what they do best—operate. Oftentimes, safer options like amputation are overlooked, especially with advancements in prosthetic limbs. Parents, pressured by social standards and desperate to keep their children "normal," don't question the medical advice.
Are prosthetics the better alternative?
For those who have achondroplasia—the most common form of dwarfism—limb lengthening isn’t much of a decision. Without the procedure, little people run the risk of having their spinal vertebrates fuse as they age. The result is severe scoliosis that confines them to a wheelchair.
Still, Hootnick thinks most limb lengthenings are not justified. It's a doctor's responsibility to do no harm, but this procedure causes nothing but harm, he says. Surgeons need to take more responsibility for pushing people down this path, he adds.
"We physicians are able to guide patients in the direction that we think things should go, simply because people seldom have any knowledge of what we're talking about," Hootnick says. "You can't understand the complexities of an operation—you've never had one."
Looking back, Hootnick says amputating Lindsay's shorter leg and fitting her with a prosthetic would have saved the Ellingsworth family a lot of heartache and their daughter a lot of pain. Now 25 years old, Lindsay recently underwent her 11th limb discrepancy–related surgery. She spent most of her teenage years in and out of the hospital, bound by wires from the external fixator. Now she owns a house in upstate New York and works as an emergency medical technician. Her leg problem is always something of a burden, due to the complications from arthritis.
Still, Ellingsworth says he made the right choice, despite his daughter's suffering. Lindsay isn't so sure. She often wonders what it would have been like to have a childhood free of surgery and chronic pain.
"Sometimes I wish I was the one with the prosthetic leg," she says. "There's always that could have been, but I guess with this choice, I'll never know."