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Fighting AIDS

Both Tim and his mother had frequent infections. Tim was her sixth child. At first his infections were bacterial, but then he began getting viral infections. He also had swollen glands—lymphadenopathy. Tim's mother had a seventh baby, and it was sick from birth with serious, recurrent infections—so sick that Dr. Rubinstein's team felt at that time that a bone-marrow transplant was the only way to save the child's life. They tested the other children to find one who could serve as a bone-marrow donor.

They were astonished to find that all seven children had different fathers. Tim's mother revealed that she was a prostitute and a drug addict and was often in jail. The baby died. Tim's mother developed AIDS and disappeared.

Soon a second child with what turned out to be AIDS was referred to the clinic, and then others. "From the beginning it was clear that these children had an immune deficiency that was different from any we'd seen in the past," he told me. The blood of patients with recurrent bacterial infections related to an immune deficiency usually has low levels of gamma globulin—which helps the body, fight off infection—or no gamma globulin at all. The children that Dr. Rubinstein saw actually had levels of gamma globulin that were above normal, but when they were immunized against common childhood illnesses, their bodies did not make the expected antibodies.

"We thought we'd found a new congenital immunodeficiency. Then we found that the mothers had the same pattern of immunodeficiency as their children, but they were healthy. This was even more puzzling," Dr. Rubinstein says. Such a situation did not fit the pattern of any known congenital immune deficiency. In late 1980 and early 1981, Dr. Rubinstein began hearing about the first cases of adult AIDS, even before the reports had been published. Although the disease occurred in homosexual men, it sounded like what Dr. Rubinstein was seeing in children and their mothers.

"Now we know the mothers got it because they were intravenous-drug users, or sex partners of IV-drug users or bisexual men," Dr. Rubinstein says, "but in 1981, nobody knew you could get AIDS through intravenous-drug abuse. That knowledge didn't come out until the following year."

Tim was placed in a foster home and later adopted. Like many children with AIDS, his development is neurologically delayed, and he is in a special school. He is part of Dr. Rubinstein's treatment study, receiving high doses of gamma globulin to boost his immune system. AZT has not been tested enough to be used for treating children.

"We can give kids infected with the virus an acceptable quality of life. They can go to school and not feel handicapped."—Arye Rubinstein

"In the past, children with AIDS died at the age of two or three from opportunistic infections that take advantage of an immune-deficient person. Today, more children are surviving to school age and may reach puberty. Their long-term prognosis is unclear, but we can prolong their lives and give them an acceptable quality of life. They can play with other children, go to school, and not feel handicapped," Dr. Rubinstein says. So far, he has seen nearly 200 children infected with the AIDS virus, and more than 100 are still alive.

Children infected with the virus who need medical care come to a special pediatric unit where they can be treated and go home the same day. The atmosphere is informal and relaxed, the room filled with toys. The kids call their doctors by their first names. Since many of these children come from broken homes or their parents have died from AIDS, foster care is desperately needed. At one point, Dr. Rubinstein says, there were six AIDS children living in Jacobi Hospital because they had no place to go. One child lived in the hospital for three years. "She stopped talking and I thought it was neurological deterioration from the disease, but shortly after she was placed in a foster home, she was singing, smiling, and speaking," he says.

Relatives or foster parents of the children have had a difficult time taking them in because of AIDS hysteria. "When one family walked up the stairs to their apartment, a neighbor would come out and wipe the railing with alcohol after them. People had to isolate themselves or keep the illness secret," Dr. Rubinstein says. Meanwhile, a study of families with AIDS patients showed that the disease had never been transmitted by casual, even cozy, contact—not by sleeping in the same bed, not by eating from the same dish, not even by sharing the same toothbrush.

To help the children and to enable their parents or foster parents to go to their jobs, a day-care center has been opened at Bronx Municipal Hospital Center as part of its comprehensive AIDS family-care program. Children are carefully screened by physicians, psychologists, social workers, and nurses before they are enrolled at the center. Because these children's immune systems are impaired, an infection in one child could pose a risk to the others. Therefore, they see a doctor and nurse first thing every morning before they come to the center for lessons and play groups.