AIDS Unit for Youngsters: A Tragic Necessity at L.A. Childrens Hospital

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.

Pediatric AIDS cases account for only a fraction of the Southland’s and the nation’s AIDS patients. As of mid-July, the Centers for Disease Control in Atlanta reported 22,319 full-blown AIDS cases in adults nationwide, 316 in children under 13. Of the adults, 55% have died; among children the figure is 62%.

But for each infected child, and the child’s family, the ailment is somehow different than it is for an adult, with a new set of ethical and moral questions. “The need is crucial for a program to streamline medical and psychological services for families,” Kaplan said.

Social Ostracism

AIDS brings not only illness to the normally energetic years of childhood, but a sudden social ostracism that can bewilder a 4-year-old and his family.

Kaplan cited one of their cases, a 4-year-old AIDS sufferer in a central California town. A nurse there, despite medical privacy laws, told someone who worked with the child’s father, Kaplan said. The word spread. The father lost his job, the sick boy’s siblings couldn’t play with other children, and at the grocery store, the boy’s mother saw acquaintances draw away from her in horror.

“It’s a bad situation if they (patients) go to a clinic, (and) if there is part-time help (who) find out what they have, they are treated like dirt,” Church said.

Even some health-care professionals do not understand that AIDS can be acquired with the serendipity of a lightning strike, and not just by the sexual or drug-abuse roulette of high-risk groups. Two children in New York have gotten AIDS through sexual abuse.

‘It’s Mind-Boggling’

Pediatric AIDS is not a usual ailment on a doctor’s diagnostic checklist. “It’s mind-boggling that physicians in private practice can’t believe it when ‘their’ kid comes down with the disease,” Church said of some physicians’ reaction to discovering their young patients are infected.

Isolated, and without the kind of support network that adult homosexual AIDS victims set up, parents of young AIDS victims wonder what to tell friends about their doctor visits, their home health precautions.

“I think the feelings parents have are similar to cancer victims’ (families) two decades ago,” said Kaplan--except for one thing:

“The difference is, we’re dealing with a contagious process that’s a terrible social stigma for parents,” Church said. “Not only the medical process, but friends won’t call them any more, relatives don’t see them. A number of parents ask, ‘What shall we tell our friends our baby died of?’ I can give them no right answer.”

Law Remains a Problem

When Childrens Hospital formed its AIDS task force last fall, it addressed the problems that might be encountered in treating young AIDS patients. But one has remained unsolved: The law.

In one instance, a pregnant woman came into the hospital with a sick child. The child had AIDS, and after the second baby was born, the mother, who was AIDS-positive herself, refused to consider permanent birth control, and did not have the new baby tested for AIDS either, Kaplan said.

California AIDS laws and regulations were not written with children in mind--and Church often finds himself in a bind because of it.

When the law was written, “no thought was given to other than gay groups; it simply was never thought of in any other clinical setting.”

‘Definite, Limited’

Under the law--and under penalty of a $10,000 fine and jail time--an AIDS blood test cannot be given without the written, informed consent of the subject, which in Church’s case means that he must technically get permission from a year-old child, or younger. Although courts might not argue with a parent signing a release form, Church said that technically he is violating the law every time he accepts a parent’s permission in lieu of the child’s.

“The law is definite and limited,” Church said. “Written informed consent is required for the AIDS antibody blood test, and each and any disclosure of results must get written, informed consent, one for each time it is sent out.”

“There have been abused children, (and) you have to ask permission of the suspected abuser if you can test him (the abuser), and by law he can refuse,” said Kaplan, although in a single case of this type that was handled by the hospital, the person did not refuse.

Confidentiality Conflict

Again under the law, unless a person has AIDS, and is therefore registered with public health services, “The law says I’m not allowed to inform (other doctors) of blood test results without written consent for each disclosure,” Church said.

So Kaplan and Church face a confidentiality conflict: A parent’s attitude of “I don’t want anyone to know” versus the phone calls the hospital staff must make to doctors and social agencies to get the families the services they need.

Assemblyman Art Agnos (D-San Francisco) has drafted a “cleanup” bill to give doctors easier access to test results. It would, among other things, give guardians the right to consent to blood tests for minors, and allow involuntary blood testing for convicted rapists or high-risk foster children before placing them in foster homes.

Too New a Disease

AIDS is too new a disease to offer consistent medical answers. “At least with cancer you can give parents some statistics,” Church said.

“A mom (of an AIDS patient) will ask me, ‘What is going to happen?’ And I have to say, ‘I don’t know, there’s no way I can predict,’ ” Church said. With gamma globulin treatments bolstering the endangered immune systems of children not too far gone in the disease, “We can buy them some time. . . . Kids I thought would be dead in a month are alive a year later--I’m amazed,” he said.

The new pediatric AIDS center, which Church and Kaplan want eventually to have at least a full-time social worker, a nurse coordinator and a computer to chart patients’ progress, will also streamline AIDS outreach services to make life more normal for families.

Problems Just Beginning

“Education is the first thing,” Kaplan said. “We recognize the potential for problems that parents don’t even think of.”

Once the diagnosis is made, a family’s social problems are just beginning.

There is finding day care or baby sitters, visiting nurses, local doctors who can, for example, give the every-three-week gamma globulin treatments so that out-of-town patients need only come to Childrens Hospital every few months.

Although school-age children can safely attend classes, Church said, health guidelines advise against group day care for nursery-age children because they might not be toilet and hygiene-trained. But “we can arrange something in the home until they’re old enough to go to school,” Church said.

“We’re working very closely with the AIDS Project of Los Angeles,” Kaplan added. “Now they’re trying to branch out to adapt services and initiate more services for kids.”

Psychological Effect

The psychological effect of children’s AIDS demands attention, too: “There are a number of parents we dealt with whose hostility level is extremely high,” Kaplan said.

In AIDS pediatric centers in New York and New Jersey, Church said, most AIDS families are black and Latino intravenous drug users. In Miami, some Haitian women immigrants brought the ailment with them, gave birth to infected children, and died.

By contrast, Southern California’s pediatric AIDS families, while mostly minorities, are more socially varied, and Kaplan has not been able to organize the kind of parent group therapy that has been helpful in the East.

“Ours are just a more diverse group. We couldn’t put together a group of parents who could sit and talk to each other, they’re so diverse,” said Kaplan, who has done her AIDS counseling one-on-one.

Gomperts is working up counseling programs for young hemophiliac AIDS patients, some of whom are getting old enough to be sexually active and therefore at risk of spreading the disease to their sex partners.

“By and large it’s a difficult situation,” he said. “We do advise restraint, counseling and educating them and (their) parents as well.

“There’s no doubt families affected in this way need to talk to each other.”