A Bone-Lengthening Technique Adds Inches to a Teenager's Leg—and Answers Her Prayers
"It is hard to believe," says the soft-eyed Gaithersburg, Md., teenager. "Before, my leg only reached to my other ankle. Now when I stretch my legs out, they are the same length."
Maria's surgery last February was the culmination of a struggle that began in the summer of 1984 in Colombia. The little girl and her family, who lived in New York City, were visiting her grandparents on their 50-acre farm outside Cali. After a placid day of picnicking and swimming, Maria, her mother, Isabel, and father, Alejandro, piled into their car for the 25-mile trip back to town. A few miles down the road, they were attacked by members of a revolutionary group called M-19, which had overrun the area in retaliation for the murder of their leader. The family's car was riddled with so many bullets that all the windows were shattered. Maria's mother, who had been driving, was hit more than a dozen times and died instantly.
"I heard my mom scream," Maria remembers. "I saw her head drop." Isabel's body fell on top of her husband, who had been hit seven times in the back but survived. Maria, in the backseat, had half of her left tibia—the principal bone between the knee and the ankle—destroyed by the bullets.
A passerby loaded Maria and her father into the back of his pickup truck and then, unable to call for help because the phone lines had been cut, drove three hours to a small hospital, using back roads to avoid further gunfire. After they were transferred to a hospital in Cali later that night, a relative contacted Maria's aunt, Maria Eugenia Pena-Faustino, in New York City, and told her the doctors wanted to amputate Maria's leg. Pena objected and immediately flew to Colombia. For the next week, she and Maria's 14-year old brother, Alvaro, who had been visiting friends when the family was attacked, slept at the hospital next to Maria's bed. Doctors continued to say the leg should be removed, but Peña was adamant. "It has been very painful when I see Maria crying," she says, "but I feel, what right do I have to have her leg cut off? I would be so guilty all my life that I did not do everything for her."
With the permission of Maria's father, who decided to remain in Colombia because of his injuries, Peña arranged for Maria to be brought to New York University Medical Center in Manhattan. There, during a 23-hour operation, micro surgeons reconnected the veins, ligaments and muscles of her ravaged leg. A series of skin grafts followed, and three years ago a bone transplant was performed to replace the tibial portion of her damaged knee. Last year, to correct her shortened leg, doctors suggested the revolutionary bone-lengthening procedure developed by Dr. Gavril Abramovitch Ilizarov, a renowned Siberian orthopedist. By then, Pena and her husband, Victor Faustino, both real estate agents, had decided to move with Maria and their son, Victor Arthur, now almost 2, to Gaithersburg. A hospital social worker recommended that they consult Dr. Dror Paley, who practices at the University of Maryland and Kernan hospitals in Baltimore and had studied the technique with Ilizarov himself.
Since developing the procedure 38 years ago, Ilizarov, once an illiterate shepherd boy, has performed it (with his associates) on nearly half a million people in his clinic at Kurgan, more than 1,000 miles east of Moscow. The method was adopted by Italian surgeons in 1981 and introduced in the U.S. 2½ years ago.
The Ilizarov surgery involves cutting into the affected bones, leaving intact the bone marrow and blood vessels in the center. Wires are then inserted diagonally through the bone above and below the incision and attached by bolts to a steel frame that looks like a tubular birdcage encircling the limb. As screws on the frame are turned, the edges of the bone are slowly pulled apart about one-hundredth of an inch at a time, stimulating new bone to fill in the gap. The rate of growth is about one inch a month, and Paley says he has been able to lengthen a leg by as much as one foot.
Paley, 33, has performed bone-lengthening surgery on some 250 patients, ranging from accident victims to those with such genetic conditions as dwarfism and bone deformities. The method is not without risks, including infection, and can be extremely painful, but Paley and other surgeons believe it will eventually revolutionize orthopedic care, enabling doctors to avoid many amputations and bone transplants.
"The difference between Maria's legs would have been at least six inches," says Paley. "You can't really live normally with one leg that much shorter than the other." The doctor adds that he couldn't have asked for a better patient. "Maria is what this technique is made for," he says. "She is so motivated and intelligent, and she has a high tolerance for pain. This girl is made of nails."
The operation, Paley says, is "not as delicate as brain surgery but very detailed, tedious and long." For weeks afterward, Maria had trouble sleeping because of the pain. Often Pena would find her crying in her room. "It hurt so much in the beginning," recalls Maria, "and it takes a long while to get used to it. But the Ilizarov was the last option I had."
To stimulate bone growth, the eight screws on Maria's leg frame each had to be given a quarter-turn four times a day. At first Pena did that, but Maria soon took on the job herself and even recruited her best friend, Amy Zepnick, to help. "Amy was the first person I told what really happened to me," says Maria, who had been teased with the name "Frankenfoot" by some of her classmates. "I trust her with everything. She doesn't think of me as different."
Soon, neither will anyone else. By July, Maria's legs were identical in length and she was allowed to stop turning the screws on her frame. In August, Paley removed the top of the frame. The rest will come off around Thanksgiving. Maria can't wait. With the frame, she can wear only baggy clothes. Now she plans to buy "jeans that fit"—and a pair of high-top sneakers.
Those won't be Maria's only milestones. Last month, at her friend Amy's birthday party, she not only stood on her own two feet, she danced on them. "Everyone loved seeing Maria shake her butt," Amy reports. "She just put her crutches down and started to boogie."
—Bonnie Johnson, Giovanna Breu in Baltimore and Gaithersburg