An Ailing Little Boy Teaches An Adult World the Meaning of Courage and Hope

updated 07/16/1979 at 01:00 AM EDT

originally published 07/16/1979 01:00AM

Five-year-old Donnie Wartenberg is a supremely happy, well-adjusted little boy, and no one can understand why. To a tragic degree, his body is the victim of congenital mistakes and their complications. He was born with no left ear. His right leg has been punctured by so many injections that the muscles have deteriorated. He suffers from curvature of the spine and must wear a brace. Worst of all, he has only one lung, and a shortage of oxygen has caused his heart to stop no fewer than 18 times. His breathing is assisted by a mechanical ventilator that forces air with 40 percent oxygen (the atmosphere has only 21 percent) through a hose to a plastic tube implanted in his windpipe. Since he was 4 months old, Donnie has lived at Children's Memorial Hospital in Chicago, most of that time in the intensive care unit.

Yet he has a serene, almost beatific quality, as if his terrible handicaps were no more than a nuisance. With an IQ that is "extraordinary," according to one of his physicians, Dr. Allen Goldberg, Donnie has become the delight of the hospital staff (lately asking Goldberg to teach him French), the joy of his family (he calls his five siblings, aged 16 to 21, "my kids") and a high-spirited companion for his three roommates in the hospital—two with heart abnormalities, the third paralyzed. Donnie's frail, tethered life somehow seems to have turned him outward. "He is incredible," says nurse Carol Vaughn, 32, who has been with the boy since he was two hours old and is almost a second mother. "In intensive care, children come in and go home, or they come in and die. Maybe because he's watched a lot of death and suffering, Donnie is extremely sensitive to people and their needs. He's grown up real quick here. When a child in the unit dies, Donnie puts his arms around us and pats us on the back."

His courage has filled his life with small triumphs—for a time when he was unable to speak because of the tube in his neck, he made up a sign language and taught it to his family and nurses. By age 2½ he could count, by 3½ write his name, by 4 identify colors. Incredibly, the damaged little boy seems capable of accomplishing almost anything he sets his mind to, except what he wants most—to go home. "Donnie needs to be with his brothers and sisters," says his mother, Betty, 41, and the doctor agrees. "Donnie isn't sick," Goldberg says. "He just needs support. He'll do better at home—he'll get into fights and learn about life, which he can't do here." But the state of Illinois has been reluctant to pay for all the home care he needs, and Donnie is limited to weekly visits to his family in Joliet. (He stays for 10 hours every Sunday.) "This problem with the state is really getting to me," says nurse Vaughn. "They act as if they just don't have to answer to a 5-year-old."

Donnie has lived in the hospital since the day in 1974 when his mother noticed him turning blue beside her on the front seat of their station wagon. "We were going to buy some shoes," she recalls, "but I took him to the doctor's office instead." He was 4 months old then and had stopped breathing. In exploratory surgery, doctors discovered that his left lung had atrophied and they removed it. (In the first three weeks of his life Donnie was operated on six times to repair a defect in his stomach wall.) His parents had no choice but to consign their youngest son (born when Betty was 36) to a hospital childhood.

"A normal child usually has two adults he has to relate to and prove himself to," explains nurse Vaughn. "But here some 60 nurses take care of Donnie. Every one of them has a different philosophy, and Donnie has had to adjust to them all." In crucial child-rearing decisions, like toilet training, the staff has always consulted Betty and her husband, Donald, 41, owner of a small trucking company (she, for example, believes the nurses should discipline her son more vigorously). The Wartenberg family has also joined in celebrating such events in Donnie's life as sitting up, standing, walking and sprouting his first tooth. "It's very easy to take over," Vaughn admits. "It's harder not to, but more important." Still, she admits, "The first time I put him in the van to go home, I cried because he was so excited to be leaving."

The fact that Donnie's permanent homecoming has been delayed by bureaucracy makes Dr. Goldberg, among others, furious. "Imagine living in this room for five years," he marvels. "It's a nice room with nice people, but I'd go out of my mind." The care Donnie needs around the clock is extensive. The ventilator must be watched constantly to make sure the flow of oxygen is uninterrupted. Donnie's bronchial system has to be drained of secretions by suctioning every two hours because he cannot cough them up himself. He must have frequent respiration therapy (pounding on his chest to clean the air passages) and physical therapy to strengthen his right leg and back. When he goes out of the intensive care unit, he must be connected to a cylinder of oxygen, installed in a cart that Donnie can push himself. Eventually, Goldberg hopes that Donnie will no longer need the respirator. ("Lungs do grow for the first 10 years," the doctor points out.) To prevent heart failure, however, Donnie will require bottled oxygen continuously for several years.

The boy's parents and his two brothers and three sisters have been trained to care for him at home, though he will need full-time nurses at least at first. Goldberg estimates that home care will cost the state $7,000 a month, compared to $13,500 in the hospital. (Two state agencies and the federal government are expected to provide the money—an arrangement that has taken months to work out.) "The state is looking at a book that never had a Donnie Wartenberg in it," Goldberg argues. "He's the most incredible kid I've ever met."

Meanwhile, Donnie grows stronger—he's 36½ inches and 25 pounds now, up two and a half inches and four pounds in the last eight months. He is sure to have some adjustment problems when he leaves the hospital for good, but his parents, optimistic that the bureaucratic snafu will be solved in the next few weeks, have begun construction of a new room on the house for Donnie. Nurse Vaughn knows the time has come. "I miss my mommy," she heard him crying in his sleep not long ago. "I want to go home."

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