Growing Pains

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How She's Grown

Born with dwarfism, Caitlin Schroeder decided to undergo a grueling surgery and recovery process to lengthen her legs.

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Caitlin had her surgery at Sinai Hospital of Baltimore. In the beginning, it was the physical pain that overwhelmed her. Then, as the first few weeks passed, her focus shifted toward the more profound realization of her new limitations: no walking, no running, no movement at all without help. A downstairs living room became her temporary bedroom, and she had to shower at Sinai in a special stall large enough to accommodate a wheelchair. In public, Caitlin wore pants or shorts with snaps on the side to fit over her fixators, which she hated to have to do; she often kept a blanket draped over her legs, but people still stared. At night, she sometimes dreamed of running on a soccer field, and woke in a bed where the devices in her legs forced her to lie still on her back. Visits to her father's house in Alexandria -- Caitlin's parents divorced when she was 6 years old -- were impossible because of the steep steps outside the front door; instead, her father, Stewart Schroeder, went with Caitlin to Sinai every Friday for rehab and visited her in Clinton.

The process was overwhelming and lonely; most of her friends didn't call or visit as often as she'd hoped they would. But after the 3 months of lengthening ended and Caitlin's bones began to heal, the results of the procedure were slowly revealed. As her bones strengthened and her physical therapy progressed, she was eventually able to stand and walk short distances.

There came a day, just weeks before the Fourth of July party, when Caitlin walked slowly and awkwardly into the first-floor bathroom of her family's house. There, Caitlin stood at the sink, and -- for the first time in her life -- she was tall enough to reach the faucet.

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Caitlin's parents never envisioned their child going through such an excruciating process. As far as Jennifer and Stewart are concerned, their daughter has always been perfect; even as an infant, Caitlin looked more like a china doll than a newborn baby, with white-blond hair and huge blue eyes. But when Caitlin was 11 months old, her parents began to notice that her head seemed disproportionately large and her limbs noticeably short. They brought Caitlin to a pediatrician, who referred them to Kenneth Rosenbaum, a geneticist at Children's National Medical Center in Washington.

Rosenbaum confirmed that Caitlin had dwarfism, though it was not until Caitlin was 3 years old that a blood test was available to positively identify which type of dwarfism she had. Before her fourth birthday, Caitlin was diagnosed with hypochondroplasia, one of more than 200 types of skeletal dysplasia characterized by disproportionately short legs and arms and heightened risk of certain orthopedic complications -- such as arthritis, spinal curvature or compression and dental problems. Though the precise occurrence of hypochondroplasia is uncertain, researchers estimate that it occurs in roughly one in every 15,000 to 40,000 newborns, according to the National Institutes of Health. As in Caitlin's case, the vast majority of dwarfs are born to parents who do not carry the gene for dwarfism, the result of a spontaneous genetic mutation during pregnancy. There are an estimated 30,000 people with dwarfism in the United States, according to Little People of America, the largest organization for people of short stature in the world.

Rosenbaum recommended that the family meet with Dror Paley, a renowned expert in the field of limb-lengthening. Jennifer and Stewart scheduled an appointment despite Jennifer's hesitancy. "We felt it was our obligation to check out everything our doctors told us to check out," Jennifer explains, "but I think, in the beginning, there was no doubt in my mind that we would not do [the lengthening]. I just couldn't comprehend that it was even going to be an issue."

By 7 or 8, Caitlin was old enough to have her limbs lengthened -- at a younger age, such surgery could stunt normal growth -- but Jennifer, who was Caitlin's primary caregiver after the divorce, was not prepared to make the decision on Caitlin's behalf. Jennifer clung vehemently to her conviction that Caitlin didn't need surgery. Even as a young child, Caitlin was a fiercely independent spirit, and Jennifer believed that they should let Caitlin reach a point where she could decide for herself. Stewart -- and eventually Mike, who married Jennifer when Caitlin was 9 years old -- supported Jennifer and remained informed but otherwise uninvolved in the decision-making process. Paley, meanwhile, didn't push the surgery; he simply explained that lengthening was most successful when a patient's bones were young and can heal more readily.

The social implications of Caitlin's size became rapidly clear after her toddler years. Strangers addressed Caitlin as if she were half her age. The clothes and shoes that fit her were intended for a much younger child. Sometimes Caitlin's friends excluded her from their play, telling her she was too small.

When Caitlin was 6, Jennifer and Stewart gave her a brand-new, bright-red tricycle for Christmas. She couldn't reach the pedals.

"That was a rude awakening," says Jennifer. Though Caitlin was ultimately content with jury-rigged wooden blocks that her grandfather duct-taped to the pedals, Jennifer remembers the moment as the dawning of a new realization.

"It was like, what about when she gets a big bike? What about when she drives a car? It started to become obvious to me what we were in for," Jennifer recalls. "Even though I was very painfully aware of those things, I was very much against doing the bone-lengthening."