In New Jersey: A Boy Towers Tall

By Raji Samghabadi

"I want to grow tall." That was the birthday gift Reza Garakani, 14, one of the world's shortest dwarfs, would ask of friends and relatives year after year. His parents would joke and bluff their way through the painful moment. "Maybe next year, champ!" Later in the night they would cry themselves to sleep together. Their son's wish, like that of more than 50,000 other Americans who suffer from some form of dwarfism, had long been ungrantable.

The immigrants from Iran had eagerly awaited Reza's birth in June 1974 as the symbol of their new life in the U.S. Houshang Garakani of Englewood Cliffs, N.J., a psychiatrist, had just launched his private practice in Manhattan. His wife Sadri had won entry into a master's program in educational psychology at New York University, an initial step on the path that would lead to her becoming president of the Englewood Cliffs board of education.

A hospital resident broke the news to a sedated and groggy Sadri barely a day after Reza's birth. "I have bad news. Your son is achondroplastic." He explained that the boy's long bones, those of the thighs, shins and arms, would not grow much. "It's O.K. His father is short too," she remembers answering drowsily. The doctor ran out of euphemisms. "He'll be a dwarf." She collapsed into sobs, protesting, "God, I don't deserve this. I have done nothing wrong." It was another day before the fighter in her took over, and she began to prepare for the challenge. "I knew I would be taking care of a boy who would not be able to reach doorknobs, refrigerator handles, light switches and the sink for years and years. Even now, he uses baby chairs and desks for homework and a stool to reach the bathroom sink."

The father, thanks to his expertise, could more easily learn to cope. Moreover, as part of his continuing training, he was in analysis. "I broke down and cried before my analyst," he recalls. Two additional factors helped: "I had been treating a dwarf, and I am short myself." He is 5 ft. 2 in. tall.

Reza, from early childhood, felt guilty for the pain his condition caused the family. He tried to compensate by becoming a totally undemanding, problem- $ free child, and to disarm potential tormentors with charm -- or stoicism when, as often happened, they persisted in their cruelty. "He's never cranky," says Giancalo Chersich, a classmate and friend of Reza's from early childhood.

"His efforts to please me used to kill me," says his mother. "I always wished he would do something to make me angry. He never would, even when he was in pain."

Reza reads a lot, especially stories about the weak using stratagems to beat the strong. An example is The Pushcart War by Jean Merrill, the tale of a battle between pushcart vendors and truck drivers that the pushcart vendors win despite apparently hopeless odds, a triumph of brain over brawn. The movie The Elephant Man brought tears to his eyes. "It reminded me of my problem. I am small, but not bad or strange." He likes Tom and Jerry cartoons. "I feel like Jerry. Tom picks on him the same way people pick on me." In a world full of Toms, he still prefers to take his chances with people rather than retreat into seclusion. He won a trophy for dramatic performance at summer camp, and two for baseball in local Little League competitions.

For his 13th birthday, in June 1987, the Garakanis offered 40-in. Reza his dream gift -- a chance for deliverance from life imprisonment in a three-year- old's body. But, his father warned, "you have to pay for it with perhaps three years of pain." Reza answered, "It can't be worse than the hell I have already gone through."

Garakani bluntly explained the Ilizarov bone-stretching surgical procedure, developed in the Soviet Union to correct dwarfism, which Dr. Victor Frankel, president and head of orthopedic surgery at Manhattan's Hospital for Joint Diseases, intended to introduce into the U. S. The shin, thigh and upper-arm bones would be cut clear through, leaving only the bone cavity and the marrow intact. A special frame, with steel pins going through the bone on each side of the cut, would keep the pieces in line and allow them to be pulled apart a millimeter a day. New bone would form and fill in the gap, adding at least 7 in. to the shin, 5 in. to the thigh and 5 in. to the upper-arm bones. Reza would become at least a foot taller.

"Let's do it, Dad. I'm ready." The father remembers, "Reza was calm, but dead serious. Like his mother, he's all heart." Reza says, "I was afraid. But they offered me something I had prayed for all my life."

On the morning of last April 4, Reza was lying down on his hospital bed, flipping TV channels with the remote-control device while Dr. Frankel and Dr. Wallace Lehman, the chief pediatric orthopedic surgeon, were discussing the procedure. Occasionally, Reza would turn his gaze from the set, which was on a rack near the ceiling, to the window, with its view of drab gray apartment buildings, not sky. The family was looking on. "We'll make a cut here, and one here, if we can," said Dr. Frankel, drawing imaginary lines across the top and the bottom of Reza's right shin. Two cuts would divide the shin into three pieces, allowing it to be stretched at two points. "Or a single cut here if calculations prove his tibia too short for two cuts," said Dr. Lehman, touching the middle of the shin. The doctors did not know yet whether the bone-stretching frame could hold in line Reza's shin in three pieces his brother Amir, 12, barely suppressed a wince whenever the doctors said the word cut. But Reza, unconcerned, continued to flip the TV channels, even when Dr. Vladimir Golyakhovsky, a hospital fellow, came in with the frame, which looks like a cylindrical birdcage. He explained that the pins forming the bottom, the top and the middle floors of the cage would all go through Reza's shin.

"I've felt scared sometimes the last few days," he said after the doctors were gone. "But I've heard that's normal. Soldiers say they feel the same way on the way to a battle."

In the ward the mother yielded to an eleventh-hour anxiety attack. "Am I doing the right thing?" she asked. The father had one answer: "He wants to become a functional human being. We shouldn't deny him the chance to fight for that." Reza gave her the definitive response in the early-morning hours of April 5, during countdown to surgery. "When this is over," he told his mother, "I'm not going to be nice to those who don't deserve it." He ticked off recollections of deep, silently tolerated anguish inflicted by pitying glances, patronizing caresses, crass jokes and outright ridicule. "I've survived because I've had the greatest family and school friends in the world. But they won't be there forever. I'll be on my own soon. I have to do it."

Reza went into the operating room and came out of the recovery room smiling. Several relatives did not have the stomach to look at his right shin, cut into three pieces, with steel pins going through the bone at three points to keep them in line. At first he refused to take pain-killers hours after the anesthesia had worn off. "They say that stuff makes you a junkie." Nine days later, he underwent an operation on the left thigh bone. The postoperative pain was much worse this time. But he kept fighting. "Just spare me the stupid jokes. This is serious business," he told his mom when she quipped that he was growing a mustache. This time he accepted some Demerol, and when it gave him a high, he became a little boastful. "Uncle Mozaffar tried to talk me out of this. He said it didn't matter if I could never drive a car, date girls or play games. He said the pain wouldn't be worth it. I don't blame him. He wasn't born in the U.S.A. I was." He drifted into sleep, smiling contentedly.

"He looks ten feet tall to me already," said Amir.

Reza is now at home, lying on an adjustable hospital bed or sitting in the wheelchair his parents have bought him. He has had surgery three more times since April to separate bone pieces that closed the gap and joined prematurely. So far, his right shin is stretched by 5 in. and his left thigh by 3 in. His skin and muscles are drawn painfully taut. He survives on codeine, Demerol, other pain-killers and huge doses of mind control and courage. He has to undergo at least three more sets of operations -- on the upper arms, the right thigh and the left shin. He broke down one day and ordered everybody out of the room. "I want to be by myself!" Did he regret the operation? "No!" he screamed. "Grownups cry for much less pain! Leave me alone, please!"

Later, in a less anguished moment, he recalls his old bed, now in the basement. "I don't want to see that bed ever again," he says. "That low bed was made for a midget."