Limb lengthening tests human willpower
Patients endure unimaginable pain for a few inches
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.
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 agonizingly painful 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 tall.
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.
In the beginning
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 acknowledged, 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 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 willowy older sister Erin. John and Rita Ruhe nurtured their daughter’s independence.
Yet 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 says. “I did, of course. It’s impossible not to.”
Taking steps for change
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.
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 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. But as they heal, they’re pulled apart to make them longer. The surgeries, which typically cost about $200,000, are covered by insurance.
With Enya’s solemn melodies filling the room from a CD player, Paley cuts holes in Christy’s leg so he can screw the rods into the bone.
Seven rods, or pins, 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 several times a day.
Paley leans into a T-shaped handle, boring 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
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 finally can’t stop it from coming. She doesn’t hear its rawness. It sounds like an animal.
She wonders if the therapist knows what she’s doing. Always, Christy thinks her leg is pulled taut. Always, the muscle stretches more. Unable to get the words out, she thinks, “This cannot be right!”
Her mother would give Christy her own legs if she could, but she can’t stay in the room when her daughter screams, when tears slide down her face and her fists pound the plastic mat. Trying not to hear Christy’s sobs, Rita Ruhe waits outside, talking to other families.
But her eyes constantly tear, and later she can’t remember what the conversations were about.
Test of willpower
There’s little blood and not a lot of cutting in limb-lengthening surgery. But recovery is an extended test of mettle and will.
Christy will go through the agony twice. She knows if she survives even the worst day, there will be another just like it a year from now.
Each day brings a monotony she comes to dread: therapy, broken up by hours of MTV and talk shows. She gets around in a wheelchair. Four times a day, she uses an Allen wrench to turn the brace and stretch her leg.
The growth of bone and muscle tissue is measured in millimeters — 1 mm a day — but Christy doesn’t feel it.
She smiles less these days, snaps at her parents and then regrets it.
She can’t sleep. The steel rods sticking out of her legs keep her from rolling over. She worries about jarring them, which sends slivers of pain up through the sore muscles.
Quitting is not an option.
“You have those moments when you say, ’I can’t do it anymore. I can’t stand it,”’ she says. “You have to look back at why you’re doing this. It’s for my health, my well-being.”
Before the surgeries, she talked herself into being resigned to a hard life. Now, the change in her body seems like an extraordinary gift. She reminds herself that the pain is temporary.
Gradually, she realizes how different her life will be. She even dreams differently now, seeing the world from her new height, as a person who blends into a crowd.
Most of Dr. Paley’s patients are children, and they crowd into the waiting room at the International Center for Limb Lengthening.
They come from nearly every continent. Little girls, with one shorter leg wrapped in a pink or purple cast, bring their Barbie dolls. Adult patients sit with their afflicted legs propped on a seat, rods penetrating the skin, machinery that looks misplaced inside healthy, smooth flesh.
It is spring of 2003, a year and a half after Christy’s first surgery, Her left leg, the one already lengthened, is straight and muscular. The leg is a promise to her that the surgeries will be successful.
But a chronic infection has developed in the skin around one rod in the right leg, which was operated on six months ago. Christy knows the rod must be removed.
The procedure will be done without general anesthesia, which always makes Christy’s stomach roil. Paley hopes it will be quick.
In the treatment room, she’s already shaking before he removes the outer brace. Later, he would say her anxiety heightened the pain.
He attaches a T-shaped handle to the troubled rod. With the first turn, Christy begins to shriek. As the rod twists through bone, muscle and infected skin, she lets out short, piercing screams.
With one arm, John Ruhe tries to immobilize his daughter’s good leg, the left one, and wraps his other arm around her shoulders. Her fist slams his chest as the pin turns.
Three minutes later, the end of the 12-inch pin appears. The hole in her thigh looks like a gunshot wound. Hot, red blood starts to roll out.
Christy’s back slumps. Her eyes are closed.
It’s two months later, and Christy is undergoing what she thinks will be her final surgery. The hardware that has become her second skin is to be removed.
But on an X-ray, Paley examines a hazy, white patch on the right thigh bone. Eight months of therapy should have left it solid — healed — but it isn’t.
Christy is unconscious a few feet away in the operating room when Paley makes the decision. If he takes the pins out now, the leg will break when she walks on it. They will have to wait at least two months more.
In the waiting room, John is thinking about what it will mean for his daughter to be healed. He looks around and sees other patients changing something fundamental in their bodies.
“Chris sees people with deformities; she sees that they probably could be fixed, but they just don’t know that it’s possible,” he says. “It seems so difficult that they don’t ever think it could be done... “
The idea that there are people suffering, as Christy did, when they could lead easier lives, overwhelms him. Suddenly, the one who holds the family together is falling apart. He starts to cry, takes off his glasses and roughly scrubs his face with his bare hand.
Rita is waiting for Christy in recovery, and no one is there to comfort him.
The banner at the party reads, “Congratulations Christy.”
It is a 25th birthday celebration, but the occasion also marks the end of her surgeries and crutches.
Friends and family who have supported her through an ordeal they can barely fathom write messages on a plastic sign.
“Good luck, and have a wonderful rest of your life,” says one.
“In my eyes, you’ve always been tall,” says the only note that hints at her physical transformation.
“You are my hero,” her sister writes.
All eyes are on Christy as she arrives. She steps carefully on her new legs. The right leg is still weak, but growing stronger.
Later, she would say she doesn’t remember all of the pain she endured. Time has dulled her memory of it, and she prefers to look forward — to a life that she hopes will be easier, now that she’s in an adult-sized body.
She takes a second to place the faces before flashing her hundred-watt smile, a picture of self-assurance.
“To me, I am tall,” she says. “I am a tall person now. That’s all that matters.”© 2012 The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.
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