Frozen in Time
Remarkably, Brooke's body and mind are frozen at the developmental level of an infant. Her bones are physiologically those of a newborn, and she has never been able to stand unaided. She smiles at people she recognizes but has yet to utter a single intelligible word. "All mothers wish their babies would always stay babies," says Melanie. "I've got a baby forever."
After studying her at length and nursing her through a succession of near-fatal health crises, doctors have given up on a normal categorization of her strange affliction. Brooke's is the first documented case of what is eerily designated an "unknown syndrome." "There's no one else like her in the world," says Dr. Lawrence Pakula, 68, Brooke's primary physician and an associate professor of pediatrics at Johns Hopkins School of Medicine. "You might say she's a miracle. She's one of a kind."
That is especially evident in family albums. Photos capture Brooke through the years, grinning at birthday parties, wearing a bunny Halloween costume, laughing with her mother. In every one, no matter when the picture was taken, she looks virtually the same. "She hasn't changed at all," marvels her father, Howard, 44, a food company sales representative. "She breaks my heart every time I walk into the room." Yet in some ways her young life has undergone a remarkable transformation, not only in Brooke, but in those who love and care for her.
Brooke spent her first five years either in the hospital or at home, where she shuttled between her crib and the windup swing she has come to love. But in February 1997 her parents nervously agreed to enroll her in what was then called the Ridge School (now Ridge Ruxton) in nearby Towson, Md., a public facility for disabled students. They were urged to do so by Pakula, who thought Brooke needed outside stimulation. It took some getting used to. "That first year Brooke hated to be touched and handled and didn't want to do anything," recalls Janet Bruns, her physical therapist. "She couldn't hold her head up. She couldn't sit on a bench, she couldn't stand up, and her hands were always in her mouth." But now the little girl has begun to thrive—standing with assistance, giggling with her teachers, finger-painting and scooting through the halls on a customized baby walker.
"If you didn't know Brooke well, you might say, 'What kind of life can this little child have?' " says Pakula. "But anyone who deals with Brooke and her family comes away inspired. Seeing her navigate the world teaches us that there are no limits to what you can do."
A generation ago, Brooke might well have been shut away in an institution. Her parents refused to do that, and, they say, have been rewarded with countless moments of joy. At the same time, however, they have had to endure enormous anguish. The Greenbergs, who met on a blind date at a Chinese restaurant, married in 1988. Two years later Melanie—who had a daughter, Emily, now 14, from a previous marriage—gave birth to a second child, Caitlin. In 1992 she became pregnant again. "Every month the obstetrician would check my girth," she says. "One month it would look fine and the next month it looked like the baby wasn't growing." Concerned for the child, at 36 weeks "the doctors said, 'We want to get the baby out now.' "
On Jan. 8,1993, Melanie, accompanied by Howard, entered Baltimore's Sinai Hospital for what she thought would be a routine induced labor and C-section. Instead she remembers confusion and controlled panic. "To this day I can't watch the video of Brooke's birth," she says. "I didn't see her at first in the delivery room. They didn't give her to me." The reason was that Brooke was born with anterior hip dislocation, a rare defect in which her legs were attached to her torso in a backward-facing position. Weighing 4 lbs. 1 oz., she was immediately placed in neonatal intensive care. At first the Greenbergs had no clue about the enormity of their daughter's disability. "We thought everything was okay, just that there was some little problem that would get worked out," says Melanie. "Brooke looked fine, and they had her sucking on a bottle. We all thought it was a hip problem."
Five days after her birth Brooke was evaluated by an orthopedic surgeon, who had never seen such a severe dislocation. "He went to the hardware store, got two wooden dowels and taped her legs to them to straighten them," Melanie says. The strategy failed. "She was so tiny they kept falling off." After a month in the hospital Brooke went home. "For that whole first year," says Melanie, who eventually left her job as a preschool teacher's assistant, "we thought she just needed to grow."
But she didn't. When powerful doses of human growth hormone brought no change, doctors suspected that, for whatever reason, Brooke might never grow. Her parents were heartbroken. As Melanie's father, Mark Rottenberg, 70, recalls, "Howard looked at them and said, 'You mean my little girl isn't going to be able to dance and play with the other girls?' "
In time Brooke began to suffer repeated bouts of pneumonia. She also had trouble eating. Doctors finally realized that because her esophagus was so small, food was being forced into her lungs when she tried to swallow. In November 1995 Hopkins surgeon Dr. Walter Pegoli, now chief of pediatric surgery at the University of Rochester Medical Center in New York, performed an antireflux operation to correct the problem. Now Brooke's daily diet-two cans of vanilla baby formula with the necessary nutrients-is ingested through a tube Pegoli inserted directly into her stomach.
Within a week of that operation Brooke was rushed back to the O.R. when her surgical wound reopened. So began a series of hospital stays and emergencies that would stretch over the next five years. One day in the summer of 1996, when Brooke went suddenly limp and her eyes rolled back in her head, doctors found that she had six ulcers in her stomach. "We thought she probably wasn't going to make it," says Pegoli. "I'd never seen this many ulcers in a child before. It's still a mystery."
That same year Melanie overcame grave anxieties and gave birth to a healthy fourth daughter, Carly. "I knew I'd had other healthy babies," she says. "But in the back of my mind for the entire pregnancy was that fear." Meanwhile Brooke's troubles continued. In early 1997 food again began to back up into her lungs, and she entered the hospital for what was envisioned as a two-day visit. She stayed five months. During that time Brooke suffered a brain seizure that lasted an astonishing 45 minutes. "She was hooked up to every piece of machinery possible," says Howard. The Greenbergs feared the worst. Finally Brooke opened her eyes. In a month and a half she was fully recovered. "There was no brain damage," says Howard. "Zero."
In September 1997 Brooke grew lethargic and was rushed to the hospital yet again. She slept for 14 straight days. On the fifth day came the horrible news that she had a brain tumor the size of a lemon and would die in 48 hours. The Green-bergs called their rabbi and brought Brooke's three sisters to the hospital to say goodbye. "We went to the funeral home and picked out her casket," says Melanie. "And I bought a little outfit for her." Three days later an MRI showed that the so-called tumor, perhaps an unidentified mass or blockage, had abruptly disappeared. "The rabbi thought it was a miracle," says Howard. "I thought it was Brooke."
His daughter had still more magic up her tiny sleeve. Doctors don't know why, but when Brooke turned 5, the medical emergencies stopped and her condition stabilized. It was then that they placed her in the Ridge School. "Three years ago we got this fragile little girl with more question marks medically than there were answers," says Bob Davison, the school's former vice principal, now Brooke's music teacher. "We moved very slowly. But Brooke just kept getting stronger and stronger." In her first year at school, therapist Bruns and the school's custodian devised padded wooden leg braces that allowed her to stand up straight. Then they fitted a baby walker with a customized seat that let Brooke scurry across the floor. "As soon as she understood that she had the power to move, there was no telling her anything," says Bruns. "She seemed to be saying, 'I like this!' "
Thrilled as they are with Brooke's progress, the Greenbergs do have one quibble with Ruxton: The playground consists of a single swing. "These kids deserve better," says Howard. He and Melanie hope to -raise $100,000 to build a full-scale play area; until then, partly in response to pressure by the Greenbergs, school officials say they will spend $50,000 to add four swings and a sandbox over the next few months.
Picked up by a yellow bus at 8:15 one recent morning, Brooke sits in a baby seat behind the driver for the 15-minute ride to school. Later, in music class, she makes it clear that she's not to be ignored: Davison begins playing an autoharp, then gives each child a chance to try it-except Brooke. "She knew she had been skipped, and she told me with noises and baby language that she wasn't putting up with it," he says. "Then I gave it to her, and she just grinned ear to ear. I said, 'I didn't know you cared that much.' "
Later that day, in her speech and art class, Brooke takes her turn pushing the play button on a tape recorder. Then she gleefully dips her hand in pink paint and scrawls circles on drawing paper. "When Brooke first came here, everybody wanted to know, 'What can we expect from her?' " says Bruns. "I say, 'Let's pretend that she can do everything, and see where she goes from there.' "
Her destination? The very nature of her enigmatic illness makes it impossible to predict. "Right now we just take it day by day and week by week," says Pakula. With that in mind, Howard and Melanie resolve to savor every moment with their small wonder of eternal innocence. "We love her the way she is," says her father, "the kindest, sweetest person in the world."
Jane Sims Podesta in Reisterstown, Md.