The official number of children under the age of 13 who have contracted AIDS from infected mothers or from blood transfusions after birth is 125. The Centers for Disease Control, however, believes the standards for reporting infant AIDS are too stringent and that the actual total is much higher. Some institutions, such as Children ‘s Hospital National Medical Center in Washington, D.C., have notified parents of children who received blood transfusions in 1982 and 1983—before screening was instituted largely to eliminate blood contaminated by the AIDS virus—that their children may be at risk and should be tested for presence of the virus. For those most innocent victims who develop the disease, the prognosis is not good. The mortality rate for pediatric AIDS now stands at 72 percent nationwide. But Dr. James Oleske in New Jersey seems thus far to have had better luck with infants.
“Have you seen my purple rabbit? I must have dropped it,” says Dr. James Oleske, as he wanders in and out of a series of rooms at Children’s Hospital of New Jersey in Newark. “A patient asked me to carry it around,” he explains as he scoops up the stuffed animal and wedges it into his pocket. “How are you, buddy?” he says, now bending over a playpen. The child’s eyes sparkle with recognition. “Where do you want to go?” the heavyset man asks the 4½-year-old AIDS victim, who opens his mouth but cannot speak. “I can’t hear you,” says the doctor.
“Home,” the boy finally rasps.
“I thought so,” says Oleske.
James Oleske is a pediatrician by profession and—because he loves kids and swore by Hippocrates—an AIDS doctor by necessity. Oleske is one of a pair of physicians who in 1981 simultaneously broke the grim news that children could get the disease once thought peculiar to homosexual men. “We were the first to see AIDS in children,” he says, “because our population [in Newark] was heavy into drug abuse. One of the biggest culprits in the spread of the virus may be bisexual men who go over to the New York City bathhouses but live in Newark with a wife and children. Bathhouses are dens of iniquity—they’re places where infections spread.”
Over a four-year period Oleske has seen 20 of his tiny patients waste away and die. To date he has cared for a total of 44 kids “and counting.” They come one and two a month. Half of them have neurological problems. They have trouble speaking or they have difficulty walking and seeing. “There is clearly a nervous-system involvement in pediatric AIDS patients,” says Oleske. When it comes to treatment, Oleske is not a miracle man. “We do not do dramatic things with AIDS” is the way he puts it. Some of his patients are fed nutritional supplements intravenously or through tubes into the stomach. All of them are given monthly infusions of gamma globulin, which works to bolster the immune system. For the rest, the good doctor practices the laying on of hands: He hugs his patients at every turn. He does this, in part, to create a climate of optimism and healing. He wants visitors to the hospital, as well the resident professionals, to see that these kids are not lepers.
Fear of AIDS is, however, nearly as epidemic as the disease itself. When he first discovered AIDS in children, Oleske says, some physicians would not shake his hand for fear of being infected. One doctor asked whether he should fire his Haitian housekeeper, who’d worked for him for 20 years. “I was so angry at the physician’s ignorance that I said, ‘Only if you’re having an affair with her,’ ” Oleske remembers. Apprehension has even been rampant in his own family. “Daddy,” 13-year-old Jimmy, eldest of Oleske’s three sons, recently asked him, “are you really sure you are not going to get AIDS? Are you careful?” Says Oleske, “His concern shocked me. I had to tell my own son what I had been telling health-care professionals—that you can’t get AIDS by casual contact.”
Oleske remains overtly optimistic. “Our mortality rate was around 50 percent, and seems to have dropped to about 30 percent.” But he admits to being exhausted, maybe even burned out. “After a while,” he says, “seeing children die is very upsetting. I went into pediatrics because I loved children. I wasn’t emotionally equipped for AIDS. I wasn’t equipped to handle a disease where children die so often. A lot of times I go home at night crying while driving on the parkway.”
He continues on his rounds. He looks into a crib and is heartened by what he sees. “Tanya has stabilized,” he says. “We have had her since birth, and she has improved. We give her good nutrition and an infusion of antibodies.” Then he comes to Judith. “Even with the best of love and care, we are losing the battle with Judith. I am not going to give up, but we have already reached the point where she has liver failure.” A few days later the 10-month-old child, who’d spent her life in the hospital, was just another statistic and a sad memory for the physician who had given his best for her.