Growing Pains: A Teen, Born With Dwarfism, Undergoes the Grueling Process of Limb-Lengthening
Behind the house, in the sprawling back yard filled with picnic tables and trees, guests are gathering for the Fourth of July party. You can't miss Caitlin Schroeder in the crowd: She's the pretty teenager in a wheelchair festively draped with multicolored feather boas and strands of beads, the girl with honey blond hair tucked behind her ears and a shy, genuine smile. She's wearing a T-shirt and shorts, her bare legs covered by a sheet. Hidden beneath the folds are 24 metal pins protruding from her flesh, each with one end anchored in bone and the other secured by a boxy, external plastic frame along her calves and thighs.
It's a clear midsummer night in 2007, and this is the first social gathering that Caitlin and her family have attended in more than three months, since the surgery that broke both of Caitlin's legs and drilled the pins into her bones in late March. The fabric draped over her is uncomfortably warm, but Caitlin's not ready for people to see her legs. She doesn't like being the center of attention, though her patience with human nature is uncommon for a 13-year-old: I don't like being stared at, she often says, but I understand why people look at me.
Caitlin came to her grandparents' party with her mother, Jennifer Anduha, her stepfather, Mike Anduha, and her little brother, Jackson Anduha. They drove in a van equipped to accommodate Caitlin's wheelchair from their house in Clinton to the lakeside home of Jennifer's parents in East Berlin, Pa.
Some of the people here -- family and close friends -- know Caitlin's story, the full extent of what she's going through and why she had the surgery that left her with such startling devices attached to her legs. For those who are meeting her for the first time, the most candid and straightforward explanation comes from 3-year-old Jackson, who says: "Caitlin is getting taller."
Actually, she has just finished getting taller. Since the day after her surgery, Caitlin, who was born with dwarfism, had been lengthening the bones of her legs. Each day, Caitlin used a wrench to turn screws that pulled the ends of her broken bones apart -- one millimeter a day in her upper thighs and 0.75 millimeters in her lower legs -- and each day, her bones generated new tissue to cross the distance. Her skin, muscles and blood vessels also stretched and grew as her bones were lengthened. In just three months, the agonizing process added 53/4 inches to Caitlin's height; she is now 4 feet, 81/2 inches tall. She has recently stopped lengthening, an encouraging turning point, but she has months to go before her bones are mended and the devices are removed.
Most childhood surgeries are dictated by need and decided by others, but this one was different. This was Caitlin's choice. And, eventually, she'll have other important decisions to make -- about how much more pain, for how many more inches, she is willing to tolerate. Limb-lengthening patients such as Caitlin often undergo multiple procedures, lengthening their legs two or three times and their arms once. This is Caitlin's first procedure, and she imagines that she might have more surgery; but right now, the thought is overwhelming.
As the sun lowers over the lake, Jackson picks up a red ball and begins a game of catch with Caitlin. The two toss the ball back and forth, chatting and smiling, until Jackson becomes distracted and wanders off, leaving Caitlin alone at the edge of the lawn. She sits quietly by herself, unable to rotate her wheelchair in the soft grass. Behind her, the back yard is filled with lively conversation. A few moments pass before Jennifer realizes that Caitlin is alone, and she rushes over, apologizing for not having noticed sooner. Caitlin apologizes, too, for requiring the extra attention. Then she falls silent as her mother turns the wheelchair and steers her back toward the crowd.
In the beginning of her seventh-grade year, Caitlin decided that she would endure whatever it took to get what she wanted. What she wanted was another five inches of height.
Five inches. For an average-size woman, it's the difference between being considered somewhat short at 5-foot-4, or somewhat tall at 5-foot-9. Caitlin stopped growing at 4-foot-23/4. For her, five inches means the ability to comfortably walk long distances and climb steps; to safely navigate a stovetop; or to play soccer and keep pace with the other kids on the field. Even seemingly minor details of her daily life would be transformed, "Like being able to see my face in the mirror by the front door," Caitlin says.
Five more inches, and she could reach the plastic dividers in the checkout lane at the grocery store, or the pedals of a car. Maybe it would even mean that she would feel more comfortable among her peers, that she wouldn't be left behind when her friends went shopping or ice skating.
But five inches comes at a price. The procedure is called limb-lengthening, and it begins with the breaking of the femur and the tibia -- the bones of the upper and lower leg -- during a six- to eight-hour surgery. Each bone is carefully chiseled in two, leaving a tiny, jagged gap between the broken halves. Metal pins are screwed directly into the bone and held securely in place by a fixator frame, an external device that provides support as it distracts, or lengthens, the bones. Physical therapy begins the day after the surgery.