Very few foster families take children with AIDS
"I opened the door and saw a little girl of 10, pitifully skinny, neglected and ill, whose personal belongings consisted of a few clothes and a large plastic bag filled with medicine."
That is how Dorit describes the entrance into her family of Osnat, an AIDS carrier from birth, who today is 15 (all the names of the children who are carriers and the names of their foster families have been changed). Dorit and her husband, religiously observant parents of four, were the first couple in Israel to agree to being a foster family for an orphan with AIDS. Osnat's late mother had AIDS, and her father also has the disease and is periodically hospitalized.
"My husband heard on a radio program they were looking for a home for a girl with AIDS," recalls Dorit. "He was moved and took pity on her, and asked me if I was willing to raise her. I agreed immediately, and a few days later, we met her. The child, who was in the custody of her father who had AIDS, had not really been cared for. She took the cocktail of medicines irregularly and showed signs of the illness.
"During the first meeting with her, we saw a very sick child. She was thin, really neglected, out of it, staring into space, and she had pus-filled wounds. It was a difficult sight, and in spite of that, we were overcome with pity, which caused us not to be deterred and to give her a home."
About one-third of the children who are AIDS carriers are orphaned of one parent. "We have difficulty finding a home for them because of the stigma of the disease. These are children whose health can now be restored with medicine, but we, as a society, ignore them," says Estelle Rubinstein, the deputy director of the department of social services at Hadassah University Hospital, Ein Kerem, and a social worker at the Pediatric AIDS Center there. At present the center is looking for foster families for two children with AIDS, aged 8 and 12.
"It's hard to find foster families for children with AIDS," agrees Shalva Leibowitz, the national supervisor of foster parenting services in the Labor and Social Affairs Ministry. "We estimate that because of the condition of the sick parents, in the future there will be an increased need for homes for such children. The public is very afraid, there is prejudice regarding the disease even though we know that one can grow up with a sibling with AIDS without becoming infected. We are looking for families who will respond to the challenge of raising a child with AIDS, families with children who will open their hearts, and we promise to pay for them and to provide professional guidance."
Most of the families with AIDS who have children with AIDS are single-parent families: The disease has usually killed one of the parents, or has caused conflict and the disbanding of the family unit, and the child with AIDS usually grows up in a home with a single ill parent. "We see many adults who are in denial about their illness, have difficulty accepting it or even do not believe that there is hope for them and refrain from taking the cocktail," says Rubinstein. "They make sure that the child with AIDS takes the medicine, but they don't take care of themselves, and then their condition deteriorates. Sometimes we see parents whose physical condition makes it difficult to raise the child, and they ask us to find a foster family. In the other cases, the parent has died or is dying, and a solution must be found for the child.
"The child with AIDS grows up with a heavy emotional burden, with anxiety about the ill parent. This anxiety is paralyzing and he is not emotionally free to enjoy his childhood. The concern for the ill parent fills his entire world. These are children suffering tremendous deprivation," says Rubinstein. "They are deprived of warmth, of love, of attention, but there is tangible deprivation as well: They don't know whether the mother who isn't feeling well today will be able to get up tomorrow morning and take them to kindergarten. These are children whose parent is not always able to make sure they have a meal. They sometimes see that the pills in the cocktail that they get every morning and evening are running out, and they have no idea whether their parent will be able to go to the HMO the next day and bring them medicine.
"They are dependent on an ill parent who is not capable of fulfilling all the many tasks of such a family unit. Moreover, they experience a large number of losses, both in the sense of losing a parent who dies and of everyday losses: Once mommy used to take me to the park, now she's unable to do so; once daddy used to take me to kindergarten, and now he doesn't. They lose their parents gradually every day."
Dorit and her husband spoke with professionals about taking in Osnat. "We spoke to the top doctors and understood there was no fear of contagion," she says in a relaxed manner. "Because we were the first to serve as a foster family, the welfare workers didn't really know how to advise us. They told me, 'Get large quantities of bleach to sterilize the house, and disposable gloves.' I must admit that to this day my children make balloons out of the gloves I bought, and that there was never a need to sterilize the house or to wash dishes with bleach. We use the same dishes, drink from the same glasses, wash their clothes together, everything without separation. The house runs normally."
A few days after she joined the family, Osnat's health deteriorated, and she had to be hospitalized. "That was the first shock," says Dorit. "I had to drop everything and be at her bedside in the hospital. I felt I was neglecting my biological children at home."
Osnat returned home after a week, but was soon hospitalized again. "For a year and a half the child was in and out of the hospital," recalls Dorit. "It was very hard, and I felt that I didn't have the strength to take care of her. After a year and a half, I felt like a caregiver. She didn't communicate with me, was immersed in her own world, didn't react much and didn't give any warmth, and I saw that I was becoming weak from taking care of her."
Dorit notes that the Pediatric AIDS Center in Hadassah accompanied and supported her, and restored her desire to continue to raise Osnat. "At first she was treated in a clinic for adult AIDS patients in another hospital, and they didn't pay attention to her special needs," she says. "Only at the pediatric center in Hadassah did we discover that she was not swallowing the medicines, but throwing them out very cleverly without my noticing, and that's why there was a constant deterioration in her condition.
"That is a typical phenomenon among child AIDS carriers who have to swallow six pills and two syrups morning and evening. I tasted them to see what it's like, and I must say they're right; it's disgusting."
Osnat's condition gradually stabilized. "She became a healthy child in every respect," says Dorit. "She takes the medicines and goes for a checkup every month or two."
Three years ago Dorit came across an article in a newspaper about an AIDS patient whose days were numbered, and the welfare authorities were looking for a home for her young daughter.
"I didn't hesitate," she says. "I turned to the welfare authorities and asked to take care of her, too. They laughed and said, 'Do you want your home to be a hospice? Have you opened a hospital?' We had to insist and to fight and in the end they allowed us to add Einav, who is now 8 years old, to our household."
At a meeting at the Pediatric AIDS Center, Einav is all over Dorit, calls her mommy and gives a warm smile to the entire medical staff. When Dorit comes into the room for a moment to consult with the doctor, she waits in the corridor, but a few minutes later she knocks at the door, thrusts in a head full of pigtails, and makes sure that mommy is there, she hasn't disappeared.
"She always has to see me out of the corner of her eye," says Dorit. "She doesn't speak much about her mother, but I know that she would lie in bed, almost motionless. Einav would wander the streets barefoot, and nobody made sure she went to kindergarten, ate or showered. But she is a child with a strong character and emotional fortitude. She knows what she wants, she's determined and she's loaded with personal charm."
Like many children with AIDS growing up in Israel, Osnat and Einav don't know about their illness, and like the many Israeli families who are dealing with AIDS, Dorit and her husband make sure to conceal from their close environment, and even from their children, the fact that the two girls they have taken into their home carry the disease.
"It's a heavy burden," admits Dorit. "My husband and I keep the disease a secret from our parents, our good friends and the children, who are growing up with the girls as siblings in every respect. We live in a wealthy area that has an educated population, but I know that the moment it is discovered, everyone will ostracize us and won't accept the girls with AIDS."
Dorit says that every time she returns home from the pharmacy with the carton of medicines for the girls she quickly removes the stickers and the brochures with the name of the disease.
"My husband and I never mention the name of the disease, for fear that one of the children will hear," she says. "I keep loose-leaf notebooks about the girls with newspaper clippings and documents in a hiding place in our bedroom."
She adds: "I see what happens when I go in with the child for a superficial checkup to doctors other than those in the Pediatric AIDS Center. They cover themselves from head to toe, wear a mask on their faces and gloves and a plastic hat, approach her with profound anxiety, and tell me, 'We must protect ourselves.' And if that's how a doctor behaves, then what can I demand of an ordinary person? Society is full of a genuinely demonic fear of AIDS."
Next week Dorit and her husband are invited to a meeting at the AIDS center, which is meant to prepare them for revealing the disease to Osnat.
"I admit that I prefer not to tell her, but I understand that she's getting to an age when it's important to inform her," says Dorit. "It's actually Einav who is more inquisitive and asks questions about the pills. Until now I've told them that there's something wrong with their blood. That they have pneumonia. That's also what I told my biological children, who see that their sisters with AIDS are in constant need of medicines. At present, thanks to the medicines in the cocktail, the girls are completely healthy and are enjoying a regular childhood. As strange as this may sound, ours is an ordinary household.
"Along with all the difficulties and challenges involved in raising children with AIDS, each time we are surprised, we are touched anew," adds Rubinstein. "The children with AIDS who are in our care have extraordinary emotional fortitude and surprising joie de vivre. They attend school or kindergarten, go to Scouts, play, laugh out loud and even make a mess in the clinic."
(Part of a series)