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A Tall Order Comes True

Christy Ruhe was born with a form of dwarfism that left her 4-foot-3. She opted for painful, controversial surgery to grow.

February 15, 2004|Gretchen Parker | Associated Press Writer

PICKERINGTON, Ohio — Limb-lengthening surgery is controversial among dwarfs, and it is painful. Still, many choose to undergo the bone-breaking and difficult therapy to gain inches in height. One patient who made this decision, Christy Ruhe, allowed an Associated Press reporter and photographer to closely follow her two-year progress. This is her story.

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PICKERINGTON, Ohio -- The tiny, silver BMW roadster slides out of the garage and zips toward the freeway. Christy Ruhe adjusts the rearview mirror and rests one hand on the steering wheel. The car, her dad's, is a perfect fit. She looks like she's been driving it forever.

Two years ago, she couldn't have reached the pedals.

Christy recently finished a procedure that surgically broke her bowed legs, then stretched and straightened them, an agonizing ordeal that would leave even her questioning how much she could endure.

Once 4-foot-3, she's now just 2 inches shy of 5 feet.

She had always craved just a few more inches. Enough to drive any car and pump her own gas, or reach the pedals under the piano. Practical things, but seven inches would accomplish so much more.

To understand why Christy would put herself through the grueling surgeries and therapy is to understand a spirit determined to be as independent as possible.

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Christy was born with achondroplasia, one of 200 forms of dwarfism. Her arms grew in proportion to her torso, but her little legs were severely bowed. At 5, surgeons broke her hips and realigned them. At her sixth birthday party, she lay in a full body cast.

But the more she grew, the more stubborn her legs became -- always bending outward.

Limb lengthening might help straighten her legs, her pediatric orthopedic surgeon said, but he discouraged the idea.

"His reasoning was: 'Why would you want to put yourself through that?' " said her mother, Rita Ruhe (pronounced ROO-ee).

The procedure is controversial. The advocacy group Little People of America has taken an official stand against it, warning of the risks of long-term nerve and vascular damage.

But Christy, who lives in Pickerington, near Columbus, couldn't get the idea out of her head.

Everything she did reminded her of the limitations of being 4-foot-3 in a world where most adults are at least a foot taller. She needed a footstool to wash her face at the bathroom sink or to flip a light switch. To drive a car, she needed extension pedals.

Her parents are not dwarfs; neither is her willowy older sister, Erin.

John and Rita Ruhe nurtured their daughter's independence. But outside the Ruhe house, Christy would learn about alienation. Strangers would stare. Her legs were weak and, on walking trips, she lagged behind.

"I always felt like, why do I have to explain this? Why do I even care what they're saying?" she said. "I did, of course. It's impossible not to."

At 22, Christy contacted Dr. Dror Paley and the International Center for Limb Lengthening, the clinic he co-founded with two other orthopedic surgeons at Sinai Hospital in Baltimore.

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It's now late September of 2001. Christy is focused on the changes unfolding in her own life, and the anticipation of her first limb-lengthening surgery is thrilling.

Her hospital gown drags on the floor as she slides off the bed onto a stepstool. She smiles widely at her nervous parents.

In the operating room, Paley's plan is to break the thigh and shin bones of her left leg and stretch the bones for three or four months as they're healing. A year later, he'll lengthen the right leg.

Limb lengthening works by taking advantage of the body's natural tendency to heal itself. The shin bones and femurs are broken and automatically begin to generate new bone. As they heal, they're pulled apart to elongate them. The surgeries, which typically cost about $200,000 for both legs, are covered by insurance.

Paley cuts holes in Christy's leg so that he can screw rods into the bone: seven in her thigh and five in her shin. Each is a foot long. Half the length protrudes from her skin, so Paley can attach them to a graphite brace that Christy will crank.

Paley bores the pins deep into the thick whiteness he sees on the X-rays.

Finding a good place to crack the bone, he first drills a tight chain of small holes. He puts a chisel to the perforation and pounds it hard with a mallet. The whirring and hammering make it sound like a construction site.

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The pain is like an ocean that sucks her under again and again.

Christy lies on her stomach, and a physical therapist bends her knee as far as it will go. Muscles and nerves are stretching to meet the length of the new, soft bone.

The therapist pushes until she feels the soft tissue become elastic. It's been only a few days since the first surgery.

Christy's face reddens, and she rides the wave of pain with short breaths. She tries not to scream but can't stop herself.

She wonders if the therapist knows what she's doing. "This cannot be right!" she thinks.

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