Advertisement
YOU ARE HERE: LAT HomeCollections

THE NATION

Dwarfs Divided Over Limb Lengthening

Health: Critics say surgery implies there's something wrong with being 'a little person.' But those who undergo it praise life changes.

July 29, 2001|PAUL PAYNE | ASSOCIATED PRESS

BALTIMORE — Wrench in hand, the orthopedic surgeon reaches into the spidery metal contraption, searching for an adjustable screw. He maneuvers into the miniature scaffolding, past steel rods and graphite braces, making a few careful turns.

Dr. Dror Paley studies the objects of his handiwork--a 15-year-old girl's legs. He's extending them nearly a foot.

"You're making really good bone," he tells Brittany Krupa. The Pittsburgh-area teenager is planning to be a bridesmaid at her cousin's wedding. "You'll definitely be able to walk down the aisle."

Paley is performing a radical procedure that makes dwarfs taller. He and Dr. John Herzenberg, a colleague at Sinai Hospital in Baltimore, extend the arms and legs of dwarfs by breaking their bones and slowly pulling them apart.

Patients beginning the procedure in the first grade can add 15 inches to their maximum adult height--from about 4 feet on average to 5-foot-3.

"You really change the quality of their lives, social interactions and career possibilities," Paley said.

Limb lengthening is meant to help people born with dwarfism. The most common form is achondroplasia, a genetic condition afflicting one in 10,000 newborns.

People with achondroplasia have average-sized heads and torsos but abnormally short arms and legs.

The operation isn't just about the physical, though. Those who make the hard choice to undergo the procedure say dwarfs can face a life of limitations and abuse--from finger-pointing by children to humiliating pranks such as so-called "dwarf tossing." They consider surgery a way to change how others see them, to cast off self-doubt and to join the mainstream in the quest for jobs, mates and money.

But decisions by some dwarfs to alter their bodies puts them at odds with others and with the largest organization representing those with achondroplasia.

The 7,400-member Little People of America says the risk of nerve and vascular damage in the years after the surgery is great. Besides, they say, a short stature makes them unique, and limb lengthening implies there's something wrong with being "a little person."

"Do you just go along with the crowd or teach people difference is OK?" said LPA activist Colleen Gioffreda.

She, her husband, Jim, and their 2-year-old son, Connor, all were born with achondroplasia. "It scares me to think people want to become more and more the same," she said.

Michael Ain, an orthopedic surgeon at Johns Hopkins Hospital, says premature arthritis is just one possible complication.

"There's an enormous amount of risk," said Ain, himself a dwarf who decided against the surgery. "Nobody really knows what's going to happen to them."

Paley's patients believe they know. One of them is Gillian Mueller, 26, of Columbia, Md., who has been living with longer limbs for 13 years.

"It's one of the best decisions I've ever made," Mueller said.

At Sinai Hospital, Paley and Herzenberg run the International Center for Limb Lengthening, treating mostly birth defects and uneven limbs. But the center is one of the few facilities working with dwarfs. Others are in Lecco, Italy; Sheffield, England; Barcelona, Spain; Kurgan, Russia; and Los Angeles.

Surgeons use a technique developed about 50 years ago by Russian doctor Gavril Abramovich Illizarov.

The procedure starts on the lower leg. Using a chisel, Paley and Herzenberg cut the bone in two. They insert metal rods into the halves and connect them to a brace resembling an Erector set. The brace is adjusted to pull the bone apart at a rate of about a millimeter a day.

"The bone makes new bone to fill the gap and we pull it a little more," Paley said.

The bone then is set in a normal cast. The whole job takes about three years. The cost is about $150,000, including physical therapy. The procedure is covered by insurance, Paley said.

Over several months, the tibia and femur can be extended at least a foot, Paley said. The younger the patient, the better the results. Pain is managed with a combination of medicine and therapy.

Patients are told beforehand of risks. About 1 in 10 lose some movement in their ankles because of muscle tightening, Paley said. But in 5,000 patients over about 15 years, there have been few serious problems, he said.

Wiggling her toes, Meredith Jones waits in Paley's office. It's been more than six months since the 19-year-old woman underwent leg surgery and she's eager to get the casts off and glimpse life from a height she's only dreamed about.

Despite an "ideal childhood" in a household with average-height parents and 6-foot-tall brothers, she began to worry about a life of barriers for someone with her 4-foot-2 stature. As she grew older, she yearned for independence.

"Being able to reach that little bar that divides your food in the grocery store checkout line would be a wonderful thing," she said.

Then she heard about Paley's clinic. Her family opposed the operation at first. "They didn't want me to change."

Advertisement
Los Angeles Times Articles
|
|
|