Growing Up Positive

Michal, 11, is burying things in the sandbox so nobody can see them. After the therapeutic game, she sits down to talk with medical psychologist Ahuva Yavin-Arnon, and tells her she had a rough time the day before. Her friends came to sleep over, and she had to slip away, go to the bathroom and take six pills.

"Why do I have to take pills every morning and evening?" she asks. "And why do I have to keep it a secret?"

Michal is one of 105 HIV-positive children in Israel who were infected by their mothers during pregnancy, at birth or while being breast-fed. Like most of the children, she is unaware she is a carrier. However, she knows she must hide certain facts: the pills, medical monitoring, frequent blood tests and visits to the hospital.

She is the youngest of three children. Life was normal until, at age 6, Michal was hospitalized with pneumonia. There it was revealed that Michal, like her mother, is HIV-positive.

Michal's father and two siblings tested negative. The discovery of the illness, the guilt and the mutual accusations between the parents made the family unit disintegrate. Nowadays Michal lives with her mother, who has difficulty discussing the nature of her disease.

"Because of the stigma AIDS has, in terms of inappropriate sexual behavior, the guilt of parents who have infected their children, the shame and the fear of discovery, many parents conceal the illness from their children and demand they conceal everything connected with their medications and blood tests," says Yavin-Arnon, the only psychologist in Israel who specializes in the treatment of HIV-positive children.

'Did you infect me?'

The Pediatric AIDS Center at Jerusalem's Hadassah University Hospital in Ein Karem, where Yavin-Arnon works, treats 30 children. The center, established eight years ago, is Israel's only pediatric AIDS facility. "Many parents fear the inevitable question, 'Mommy, how did you get infected?' or the question that is actually an accusation, 'Mommy, did you infect me?'" explains Yavin-Arnon. "There is also a close connection between the trauma of the parents and the way they reacted to the discovery that they were HIV-positive, and the fear of telling their children that they also are infected. They are afraid their children will become depressed, will lose the will to fight the disease or will simply not want to go to school.

"Chiefly, there is a fear these parents share - that their secret will be discovered through their child. One girl told her best friend that she and her parents were HIV-positive. The friend spread the story, and the girl's family was ostracized and forced to move to another city."

How does the need to keep the disease a secret affect the children?

"It creates an emotional burden, a problem for relationships based on trust, and a suspicious attitude. They can speak about the illness only with their parents and the medical staff." Yavin-Arnon notes that although the doctors cannot tell the children they are HIV-positive, they aim to encourage them to ask questions and to encourage the parents to respond. "We don't tell a 5- or 10-year old, 'You have AIDS.' Instead, we help the parents to reveal the truth to their children gradually. When children first arrive in the center, we tell them they have a virus in their blood. When they ask why they have to take pills, we reply, 'So that you'll be strong.' When they ask, 'Why do only my mother and I take pills?' the discovery process progresses."

"Sometimes," she confesses, "we work with these children, sitting in front of a poster reading, 'Hug me, I have AIDS,' and the children still choose not to connect the poster with their condition." The process of discovery is effective: "A 14-year-old girl who learned of Ofra Haza's story asked her father if she had the same disease as the singer. Because the process was gradual and because we had built trust with the parents, the girl accepted the news with understanding. It didn't shatter her because she had had some inner knowledge that she had a disease. Now the disease suddenly had a name."

The parents are silenced by their fear of discovery and shame. They refused to be interviewed for this article, even with a false name, because of the fear that people might identify them.

"I was once interviewed by a newspaper. Although I used a false name, the reporter didn't sufficiently blur my identity and people identified me. I was fired from my job, my family was ostracized and blackballed, and my son and I had to move to another community," recalls S., who has AIDS and whose son is HIV-positive. "I fear something like that happening again."

Estelle Rubinstein, deputy director of Hadassah's social services department and a social worker at the Pediatric AIDS Center, becomes very emotional when she sees Rachel arrive for the first time with her 6-year-old daughter. The girl, who had previously come only with her father, pulls her mother with determination. "Rachel was angry with her husband because he had infected her with HIV, and as a result, she had given birth to an HIV-positive child," explains Rubinstein. "She translated that anger into passivity, and she conveyed a message to her husband: 'You infected me, so you'll have to handle our child's treatment.'"

"Treating HIV-positive children is family treatment," Rubenstein says emphatically. "The question of who infected whom is always asked, suspicions are aroused and there are strong guilt feelings that, in most cases, break up the family. The dynamics between the parents have an impact on the children, who feel they are the source of the parents' quarrels. Moreover, in most families, there are healthy siblings who live with the family's secret and are neglected because the parents' attention is naturally focused on the carrier child."

An HIV-positive mother faces worse stigmas, even when infected by the father, because she transferred the virus to her child - in pregnancy or while nursing. According to Rubinstein, the most difficult part of the treatment is the emotional, not the medical, aspect, because the child must contend with a society that treats people with HIV as pariahs.

Healthy, normal children

Professor Dan Engelhard, the head of the Pediatric AIDS center, has worked in this field for 20 years. "AIDS has been transformed from a fatal disease to a chronic illness people can live with," he says. "In the past, when children with AIDS came here, they were dead in a year or two - even before they could ask what their malady was. Today, with the new medications, the life expectancy of people with HIV has increased. We have children whom we have raised from infancy and who are now healthy, energetic 16- and 17-year-olds; however, society makes life difficult for them. They learn that, to survive, they must lie."

Unlike children with cancer, who are supported by their parents and who can tell friends about their illness, "HIV-positive children," explains Engelhard, "have at least one parent who has AIDS or is HIV-positive, and they cannot tell their friends, 'I have AIDS, but don't worry, I can't infect you.' The truth is they cannot infect them - there have been no cases of the disease being transmitted at school - but they're still scared to death. They will tell their parents, who will refuse to send their children to a school where a student has AIDS. HIV can be transmitted in three ways: from a mother to her baby (although in recent years, HIV-positive women have given birth to healthy babies via Caesarean section), through sexual relations; and through direct contact with blood.

"We felt that children are swallowed up at the adult AIDS centers," observes Engelhard, "and we decided to give them the attention and dignity they deserve."

"In most cases," he continues, "HIV-positive children grow up in single-parent homes in difficult economic circumstances. A third of the children we treat are AIDS orphans placed in foster families. Children with cancer have public organizations, and companies try to outdo each other in helping them. And that's a good thing. However, in Israel there's not even one organization for HIV-positive children."

Engelhard says that over the years, he has tried in vain to interest organizations and companies in supporting HIV-positive children. The Israel Aids Task Force has limited resources and offers as much help as it can.

Rubinstein: "Our goal is to give hope to HIV-positive children and their families. Without hope, a mother and her child will not take eight, sometimes 13, pills every morning and evening. But we see that life can overcome all difficulties: Carriers fall in love, raise families and bring healthy children into the world. We also see HIV-positive children who are optimistic and full of zest for life, who want to grow up like other children."