Pam Nuytkens came to the seminar about children with AIDS, not because she has youngsters with the disease under her care, but because she said she wouldn’t know what to do if she did.
“We haven’t been faced with that (acquired immune deficiency syndrome) yet,” said Nuytkens, acting director of Inglewood’s Harry A. Mier Center, an infant/child development program of the Crippled Children’s Society. “But, before it happens, I’d like to have some sort of reasoning for parents, people referred to us and for the staff.”
Nuytkens and about 35 other health care professionals, teachers, representatives of state social service agencies and a dental hygienist came to Childrens Hospital on Sunset Boulevard last weekend to listen to doctors, nurses and social workers talk about “AIDS in Young Children in Group Care.”
Sponsors of Workshop
The workshop was sponsored by the Infant Development Program of the Exceptional Children’s Foundation, a nonprofit multiservice organization for developmentally disabled children and adults.
Like Nuytkens, most people who attended the Saturday morning workshop said that they had no pediatric or adolescent AIDS patients, but came to educate themselves as a matter of preventing panic about AIDS when they do have to deal with children who have the disease.
“There is a lot of fear, insecurity and misinformation about AIDS in the health care community as well as the general population that needs to be addressed,” said Dr. Edward Gompers, director of the Hemophilia Comprehensive Care Center at Childrens Hospital, who spoke to the group.
“The fear reaction is both unappropriate and appropriate,” Gompers said. “That is why you have to educate people about the disease.
“As the months tick by, we are finding much less misinformation in the health care community, especially in pediatrics. The issues are rapidly being addressed. People are asking, ‘What is the threat of AIDS?’ and ‘How do we deal with it when cases come to us?’ With adult care facilities, you’ll find most internists have been in contact with one or more AIDS cases, so they know what to do. But with children, the numbers of cases of AIDS in children are small at this time.”
Gompers said that in Los Angeles County there are currently 12 pediatric cases of AIDS. Five of those are being treated at Childrens Hospital; the others are at Harbor-UCLA Medical Center in Torrance and at UCLA Medical Center in Westwood.
Disease Swift in Children
Children with AIDS, the majority younger than 2, die sooner than adults with the disease, Gompers said. “Once the diagnosis is made, they will live a matter of months, rather than years,” he said.
In most of the current pediatric AIDS cases, the disease was transmitted to the child by a parent, Gompers said. “And 80% are minorities and lower-income people. They get the disease from their mothers, who may be intravenous drug users or were infected through a sexual partner.” The disease is contracted before birth.
Gompers said that although there have been previous cases of babies contracting AIDS through blood transfusions, there have been no new ones lately, presumably because blood donors have to be tested for the presence of HTLV-III antibodies.
Babies’ Development Lags
AIDS in babies affects the central nervous system and causes slow development and brain atrophy, according to the physicians and nurses at the workshop. “The symptoms surface in the child not developing normally, growing properly, not cooing, not sitting properly,” Gompers said.
“Because of the lengthy incubation period of the disease, the first features (of AIDS) will show up between six months to a year or 15 months. The incubation tends to be much shorter in children. In adults it can be seven years, maybe eight or 10.
“There are many more ARC cases (AIDS related complex) and they live longer (in both children and adults). They need a lot of care and attention. But there are no accurate statistics on ARC cases. It is generally estimated that for every one AIDS patient, there are 10 with ARC. Now, if you have 10 with AIDS, that’s 100 with ARC.”
Gompers said that many physicians treating babies who are sick fail to recognize ARC symptoms. “There are a lot of things to make kids sick, but the physicians are treating them for pneumonia, colds, ear infections. It hasn’t clicked that they may have ARC,” he said.
The number of adolescents with AIDS is even smaller. Of the 1,651 AIDS cases reported in Los Angeles County by the end of March, only two are teen-agers.
“But, it’s very important to get the information about AIDS out to these kids, the adolescents, now,” Gompers said. “There aren’t many cases now, but a year or two down the road we’ll see them. My own opinion is that adolescents are the major group threatened today. As they physiologically enter adolescence, they enter a phase of sexual activity and promiscuity and the drug scene.
“The media, the schools, everybody ought to be getting AIDS information to these kids. The important thing they should know is that AIDS is a sexually transmitted disease.”
Gompers, who came to Childrens Hospital eight years ago from Johannesburg, South Africa, where he practiced at the South African Institute for Medical Research, an affiliate of the Witwatersran University Medical School, is on the board of Los Angeles City-County AIDS Task Force.
Gompers told workshop participants that he is particularly upset about the fact that California has yet to publish guidelines for dealing with students with AIDS and AIDS Related Complex.
The first state to determine educational guidelines concerning AIDS patients was Connecticut, in 1984, according to Gompers. “In August, 1985, the CDC (Centers for Disease Control in Atlanta) issued guidelines on the issue, but California has yet to do it.”
Right to Attend School
Gompers said Connecticut guidelines provide that AIDS students have “a right to a free and suitable education.” He said he believes that a schoolchild with AIDS “has the right to attend school, with special provisos.”
“The life expectancy of a child with AIDS is short, and we know this virus is very easy to kill,” Gompers said. ". . . The normal washing process--washing your hands, washing clothes--kills the virus. You can use soap and water, detergents, wipe off a surface with a bleach solution. We recommend this to schools and hospitals.”
Gompers said in one instance he had met with a child with AIDS, the child’s mother and school officials to set up a contract so that the child could attend school.
Need for Guidelines
If California had state guidelines, Gompers said, much of the “media circus, the court circus, the antagonism of parents and school districts, parents and teachers, and the stigmatization of children wouldn’t be happening.”
“Many states have developed guidelines for education,” said Gompers. “They act as an anchor, a resource and a foundation on which the school districts, principals, teachers and nurses can deal with these cases. Had there been state guidelines, I think the El Toro school board would have acted differently. There would have been no need to go to court. No need to have the child such a subject of focus.”
Gompers was referring to the case of hemophiliac Channon Phipps, 11, who had to go to court to get the Saddleback Valley Unified School District to readmit him to school this winter. Phipps has AIDS antibodies in his blood, but does not have the disease.
He also mentioned the national attention that has been focused on the Indiana case of AIDS patient Ryan White, 14, who a judge ruled could go to his Kokomo school. After losing their battle to keep White out of the school, a group of parents set up a separate school for their children in an American Legion hall.
Gompers said the state Department of Education approved AIDS guidelines for California schools last year, but the “Department of Health has sat on it. I feel the senior officials have not been responsible.”
After Gompers’ opening speech, there was a round-table discussion headed by social worker Sherry Szeles, child-development specialist at Childrens Hospital; Dr. Deane Wolcott, assistant professor of psychiatry at UCLA; and Nancy B. Parris, nurse epidemiologist at UCLA.
“My concern as a child development specialist is looking at the needs of children, all ages,” Szeles said. “But in the kids under 3, you find they are usually six months to a year behind (normally developing infants). But all of them are alert, active and physically appealing. My responsibility is to interact with them. Right now, though, the population is not big enough per se to have an AIDS nursery or AIDS preschool. The ones who have it are isolated, alone, and they need a lot of attention.”
Szeles spoke briefly of four babies with AIDS, two who contracted the disease from their mothers, two from blood transfusions. She said hospital staff members have a specific program for each baby, a certain time for play, for parental visits, for naps. Each has toys and pictures of his or her family. One child’s mother made a tape singing a song so that her baby could hear it in the hospital.
“But the main issue for parents (of AIDS infants) is the isolation they feel from everything in the outside world,” she said. “It is devastating to the families . . . There’s the confidentiality issue. I’ve had parents say to me, ‘I don’t know who to tell.’ I’ve other families where siblings aren’t allowed to play with their brother or sister because he/she has AIDS. You get different reactions . . .
“We need education and health professionals just to be aware of the problems and not to jump to conclusions,” Szeles said. “There are long-term needs and we have to look at planning for them.”
Wolcott spoke, too, on the problems families have when they have a child with AIDS, psychological affects, stress and distress, parental guilt, problems of dealing with death and grieving, the social stigmatization surrounding the disease.
“It’s a real crisis,” said Wolcott. “Parents are overwhelmed when the doctor says, ‘Madam, your child has AIDS.’ There is fear, guilt and acute death anxiety, the same as with families with cancer patients. . . . A physician I know told me his son is dying of AIDS, and he said ‘I can’t tell anybody on my staff or others in my family.’ ”
Wolcott said that with pediatric AIDS, many of the babies come from “chaotic families, mothers who are prostitutes, i.v. drug users . . . There are many psychosocial phases the normal family goes through in responding to an illness. The chaotic families have additional stresses.”
Wolcott recommended having massive educational programs for families whose children have AIDS or ARC and support groups for the parents.
Fear of Unknown
“ARC patients have more psychological problems than people with AIDS,” he said, because they don’t know if they will contract AIDS.
Nancy Parris dealt mostly with educating health care staffs, giving them guidelines on repeated washing of their hands, wearing gowns if they are likely to come in contact with infected material, wearing gloves if the patient has open sores or they have to clean up a child’s secretions.
“Because AIDS is not airborne, we don’t advise wearing a mask,” Perris said. “If the child is coughing a lot or spitting, wear a mask . . . You take the best possible precautions you would when providing the same contact with another sick child. You follow good common sense. You are not going to get AIDS from handling a toy.”
Parris said that during a two-year study in which she had participated, 300 people who work with AIDS patients “handling blood, feces and body fluids” had been monitored, and no one had developed the AIDS virus.
She proposed educational programs for all health care personnel in dealing with the AIDS crisis.
“There are two diseases,” Parris said. “One is AIDS, the other is AIDS hysteria. We can combat the latter through education and common sense.”