Long on Courage
02/17/1992 at 01:00 AM EST
IT WAS A SPARKLING FLORIDA MORNING—March 19, 1989—when Gillian Mueller, 14, who was visiting her grandmother in Ocala, called home to Long Island, N.Y., and announced, "Hi, Mom. I'm off for my first swim as a tall person."
Gillian's mother, Lynne, 47, still treasures that moment. Her daughter had been born with dwarfism (the medical term for being abnormally short-statured) and in 1988, at Lynne's urging, had undergone complex surgery to lengthen her shin bones. Within four months of that operation, Gillian's legs had lengthened 6½ inches, making her 4'6".
But her daughter's pain from surgery and physical therapy had seemed unendurable at times, and Lynne fretted that she had made the wrong decision. "If it had been a failure, there was no one to blame but myself," she says, "because I had pushed for it."
Yet the joy in Gillian's voice as she headed for the ocean that March day calmed Lynne's fears. During the next two years, Gillian herself decided to have two more operations—to lengthen her arms and thighs—both performed by Dr. Dior Paley, 35, a specialist in bone-lengthening surgery at the University of Maryland and Kernan hospitals in Baltimore. At 13, Gillian was 3'11½". Today, at 16, she stands a full 5', which makes her the first dwarf in the U.S. to be so extensively lengthened in both arms and legs. "My whole life is easier now," says Gillian. "Many people born like me aren't given this opportunity."
Gillian was 3 months old before her father, Martin, a Manhattan lawyer, noticed that her limbs looked out of proportion. Tests revealed that Gillian had achondroplasia, a form of dwarfism. Though her spine was normal, she had markedly short limbs. Her projected adult height was 4'2".
Gillian dealt with her limitations gracefully. To reach the flatware in her school cafeteria, she would clamber onto the counter. To cook at home, she used a stool at the stove. She made friends easily, squabbled with her brother, Colin, now 12, and seemed independent and happy. "We told her," says Lynne, "there is very little you can't be if you put your mind to it."
Still, the challenges Gillian faced concerned her parents. In 1988 Lynne heard about the bone-lengthening procedure pioneered by a celebrated Russian orthopedic surgeon, Gavril Ilizarov. She met with Dr. Paley, who had been trained by Ilizarov and decided he could help. Martin, who was divorced from Lynne in 1984, was not persuaded until he met one of Paley's other patients, who had had similar surgery. Only Gillian remained opposed. "I was nervous," she says, "and I felt I was being pushed."
Her mother's anguish over that decision began after Gillian's first seven-hour operation, in June 1988. Paley cut through the upper and lower parts of the tibia (shin bone) in each leg, then inserted steel wires above and below each break. The wires were then connected to cylindrical frames, which formed a miniature scaffolding outside each leg. Gillian learned to turn eight screws on each frame daily in order to gradually pull the bones further apart and allow new bone to grow. "I saw her in the recovery room," says Lynne, "and thought, 'My God, I talked her into this?' "
As the weeks passed, Lynne became increasingly distraught. Leg braces that Gillian wore at night kept her from sleeping, the pain sapped her appetite, and daily physical therapy was often excruciating. When Gillian had lost 20 lbs., Lynne called Paley and said, "We have to stop." Paley suggested slowing the process from eight screw-turns a day to six. Gillian's pain diminished, and by August she was eating and sleeping well. The full-leg casts that marked the procedure's final stage came off in March.
Her parents would have stopped at that point, but a year later Gillian elected to have her arms lengthened and was able to attend her 10th-grade classes wearing her arm frames. Then, last year, Paley performed a new, refined procedure to extend Gillian thighbones, which was far less painful than her initial leg lengthening. Her recovery time was shorter, but she could not put pressure on her legs for three months. Her mother, a commodities broker, set up an office at home so she could be around to help her daughter: Insurance covered most of Gillian's total medical costs, which came to more than $200,000.
Both Lynne and Martin believe that bone-lengthening was the right step for Gillian, though the procedure is controversial. "Parents are saying, 'I'm uncomfortable with the way you look, so I have to fix you,' " says Peggy Albert, executive director of the Little People's Research Fund. But, says Lynne, "Gillian knew we thought she was beautiful the way she was." Says Martin: "Now she is playing on the same field as everyone else."
Dr. Paley, too, is pleased with his results. No one yet knows how lengthened bones will wear with the years, and arthritis is a possibility. "But," says Paley, "Gillian's joints look fine." Happiest of all is Gillian. Her teachers say she is blossoming. She was the honored guest at this week's formal opening of the University of Maryland Center for Limb Lengthening and Reconstruction. And she has a new ambition: medical school. "Because of everything he's done for me," she says, "Dr. Paley is my hero."
GIOVANNA BREU in New York