He was weak, malnourished and ailing with pneumonia. He had been in and out of hospitals for much of his sickly two years of life, and his medical paper work listed him as a possible victim of neglect. There had even been a police protective-custody hold on the boy, and the hospital had barred his family from visiting him, since it was his family who were suspected of neglecting him.
But it wasn't his family who had been slowly ruining the boy's health all those months. It was AIDS, undiagnosed for those weeks that the boy had been kept apart from the family who loved him, by people legally and morally obligated to help him.
Once AIDS was diagnosed, the boy was transferred by court order to Childrens Hospital in Los Angeles, and his family was at his bedside again.
First Patient Turned Up in 1983
Childrens Hospital's first AIDS patient turned up in 1983. Now, having treated a good portion of the Southland's young AIDS and AIDS-related complex victims--children from San Diego to San Bernardino County, from well-to-do beach homes and impoverished barrios--the private hospital has begun organizing the first AIDS pediatric unit on the West Coast--the fourth in the nation.
Such a center has been tragically necessary. In a social climate where, as one social worker said, "AIDS is not looked at as another of the diseases children can get," they are getting the disease, and with greater frequency.
Children born prematurely or hurt in accidents get AIDS from transfusions of tainted blood, donated before donor screening tests were developed. Children inherit it from a father or mother who at one time took drugs intravenously with a contaminated needle, and often, the children become a second generation of AIDS victims.
One of Childrens Hospital's young patients got the virus from his mother, who died of AIDS herself shortly after the boy's birth; the same AIDS-tainted semen that had made it possible for her to conceive her child through artificial insemination infected both of them. Another child died of AIDS from a blood transfusion that his mother had received five years before he was born.
Another couple, who had worked their way into solid middle-class lives after kicking drug habits years before, have had their old ways come back to haunt them: The child, conceived long after the parents gave up drugs, is AIDS-positive, and so are they.
"The problem is growing," said Dr. Edward Gomperts, head of the hospital's hemophilia center and the man who will be co-director, along with Dr. Joseph A. Church, of the new pediatrics AIDS program. A grant application is in the works for the program, and Church hopes that it will in full operation by fall.
The pediatric unit will be a single clearinghouse for medical and psychological services to help the young victims of a notorious disease--children who suffer from an ailment so stigmatizing that they might otherwise have to check into their local hospitals just to get a dental checkup. With its labs and specialists in children's blood disorders, cancer, surgery, adolescent medicine, and ear, nose and throat diseases, Childrens Hospital is unique in its ability to handle young AIDS sufferers, Gomperts said.
And because most of its young patients are from minority groups, the pediatric AIDS program will try to contact social-help groups in black and Latino areas, so they can provide personalized services and education.
"It means expanding the capability of what we have. With the center concept, that adds a different dimension," said Marcy Kaplan, the hospital's clinical social worker who handles the AIDS and other infectious-disease patients.
21 Young Patients
So far, 21 young Southern California AIDS patients, averaging not quite 3 years old, have come to Childrens Hospital at various stages of infection, and nine have died, Church said. Twelve suffered full-blown AIDS, seven had AIDS-related complexes, and two show AIDS-positive blood tests, but not the disease itself. (In Los Angeles County, 16 cases of full-scale AIDS in children have been reported to health authorities.)
Six Childrens Hospital cases were born prematurely, and were given blood transfusions--ironically to improve their chances of survival. Five got tainted blood later in life, nine had AIDS-carrying parents, including at least two drug-using fathers who passed on the ailment to their non-drug-user wives, and a woman who had received a tainted blood transfusion and gave birth to an AIDS-infected child, who has since died.
"The numbers of little children who will become infected through their infected parents will grow in number, there is no doubt about it," Gomperts said. By contrast, the risk of infection from tainted blood transfusions, the cause of some of the nation's first child AIDS victims, is diminishing, he said, because blood donations are being more carefully screened.
"While the blood supply is purer, the virus out there will spread other ways," he said.