Rahmeir Hall does everything that any active 2-year-old does and more, his foster mother says proudly. He clambers energetically onto, then off, the living room furniture. He points out family members in a framed photo, carefully listing each name. He is learning to talk and, after several television appearances, to beam cherubically into a camera lens.
Only his scratching--at his eyes, his groin, the roots of his curly hair--indicate something is wrong. It was a rash "from the top of his head to the bottom of his feet" that sent his guardian and aunt, Ethel Chambers, to a dermatologist and, eventually, to Dr. James Oleske, who soon saw that this was no allergy. Pneumonia, infections, fevers, liver and spleen abnormalities, a reversed cell ratio in the blood--in grown-ups, the disease with these symptoms is called AIDS.
Oleske is a pudgy, 38-year-old pediatrician who looks like Captain Kangaroo in a white coat. He comes to work at St. Michael's Medical Center here with arms bruised from a weekend struggle to hang a backyard basketball hoop for his two sons, and with tales of the mighty Parsippany Red Sox, the Little Leaguers he has coached to a 9-0 season. He grabs a plastic cup of lousy coffee from the urn and takes a deep breath. Oleske's days have become mad marathons since he began saying--in newspaper articles and on the evening news and last month in the pages of the Journal of the American Medical Association--that he and his colleagues have seen 11 infants and toddlers like Rahmeir who have what he believes is Acquired Immune Deficiency Syndrome, and that four of them already have died from it.
Waiting outside his office this morning are: A 9-year-old whose mother recently died of AIDS and whose father is frightened that she may have somehow passed it to her son. A premature infant wrapped in a yellow blanket whose parents are panicky about a blood transfusion from a diseased donor. A nurse from a nearby children's center who wants to know what to tell parents about the syndrome.
"I'm not sure we know what to tell parents," Oleske says wearily to the note-taking nurse. "I'm not sure we know what to tell anybody."
Oleske sounds calm as he discusses the apparent cases of juvenile AIDS--previously seen in adult homosexuals, intravenous drug abusers, Haitian immigrants and a few hemophiliacs--and the children of families at risk. He greets each young patient with a hug or kiss, and never frightens them by wearing a mask or gloves (though he's very cautious when drawing or handling their blood). He's not worried about contaminating his family or his Little Leaguers, and he thinks the San Francisco Police Department's issuance of masks to some officers in heavily gay neighborhoods is "a joke." He tells the nurse from the children's center to reassure the parents--AIDS isn't likely to start traveling through elementary schools. "Casual everyday contact is okay," he says. "You don't get it from the air, a plate, a glass. Uncle Charlie with AIDS can come to the family birthday party, though he shouldn't squeeze and hug and kiss a newborn."
Yet there is something particularly horrifying about AIDS in children. There is something frustrating to Oleske about his abruptly becoming the juvenile AIDS expert--an expert with no research grants or federal funds. The Newark team's findings, if they're correct, mean that Oleske has to help toddlers who've just learned to walk start fighting for their lives without knowing what weapons to use, without even knowing the exact nature of the enemy.
The mortality rate among the 1,450 cases of AIDS so far reported to the Centers for Disease Control in Atlanta is nearly 40 percent, and since no one has yet recovered from AIDS, epidemiologists are starting to wonder if the death rate over time may be 100 percent. The Newark findings also mean that AIDS can spread without sexual contact, blood transfusions or dirty needles. "The innocent, nonconsenting victims," Oleske calls them.
He first began to see these unexplained immunological deficiencies in the late 1970s, as he was setting up an Immunologic Diagnostic Center here in the poorest of the nation's big cities. Oleske's positions at St. Michael's, at the nearby University of Medicine and Dentistry of New Jersey, and at Children's Hospital of New Jersey, and his unusual joint specialty of pediatric immunology brought him referrals from physicians unable to explain what was ailing these babies.
"Once a year we'd see a kid with an immunological deficiency so rare we'd send him over to Sloan-Kettering" in Manhattan, where Oleske is also an associate. "But starting in 1980, we began seeing many more children with unexplained deficiencies." At the same time, the Newark team was asked to start blood testing for gay adults suffering from the mysterious and apparently lethal syndrome that was not yet called AIDS. The repeated infections, the unusual blood test results--could there be some connection? "In the back of my mind it was dawning on me that what we were seeing in the kids was what we were seeing in the adults. Obviously these kids weren't homosexuals or drug abusers. But after six months or a year it occurred to us that all these kids were from families with one of those risk factors."
What cinched his conviction was a chance meeting: Oleske recognized a man who showed up at the lab for testing as the father of a little girl who had died the year before of a rare pneumonia. When the man's work-up indicated AIDS, Oleske called in researchers from several northern New Jersey hospitals and the state health department (New Jersey ranks third in reported AIDS cases, behind New York and California), and the group began sifting through their young patients' histories.
"In each situation, the child was born into a family with a known risk for AIDS," Oleske says--a black or Hispanic family where a mother or father used intravenous drugs (but may not have shown AIDS symptoms) or, more rarely, a Haitian or Dominican immigrant family without I.V. drug habits or AIDS. The syndrome appears different in children--they suffer similarly from recurrent infections, have anemia and a particular form of pneumonia, show enlarged spleens and livers, but don't develop cancers like the Karposi's sarcoma that has killed so many gay men. It seems just as deadly, however. "They all know we're fighting an uphill battle," Oleske says of his kids' parents, with whom he spends hours talking. "I really don't know what to tell them. I say we'll do the best we can."
Oleske shares the widening conviction that AIDS is caused by an infectious virus, and he theorizes that children's intimate contact comes from being born through a contaminated birth canal ("which is as intimate as you can get without sexual contact") or from the kissing, cuddling and nibbling showered on newborns by parents who have AIDS (though they may not know it). Older children seem less at risk. The doctor is treating some of his patients intravenously with the blood product gamma globulin, which seems helpful, "But we're shooting in the dark," Oleske acknowledges.
Juvenile AIDS, if that's what this is, so far has attacked the children of the poor, of immigrants, drug users and prostitutes.
Oleske's lab hasn't gotten a public or private nickel to pay for all the expensive testing his indigent patients rarely even get billed for. Third parties like Medicaid and Blue Cross have not stepped in with reimbursements. He and his technicians still do essential but tedious cell-counting by hand, peering through a fluorescent microscope set up in a former bathroom pressed into lab service, but Oleske doesn't have $200,000 for a cell-sorter.
He'd be happy to return to the bone marrow transplant unit he wants to establish, and to his private practice. He'd be delighted to go home with his kids after the Parsippany Red Sox whomp their opponents instead of driving back into Newark. "We just wish the whole damn thing would go away," he says. "I wish I would never see another referral for an AIDS kid. But that's probably not going to happen."
So, however dispirited he privately becomes, with his patients and their parents there is insistent good humor. Oleske helps when Rahmeir needs an ambulance or his special formula. He jokes about how there is more of the 2-year-old's blood in various laboratory refrigerators than in his small body.
"I've got hope because Doctor Oleske says that in 10 years we'll hold a reunion for all the babies," Ethel Chambers says. "If Doctor Oleske has hope, I have hope, and he says Rahmeir's going to make it."