Busybodies were the topic at a recent meeting of parents of children at a Bronx day-care center.
Busybodies are the relatives who wonder why Janie is sick so often, the people at church who remark that Billy hasn't been there much lately. They're the women at the bus stop who ask how they can get their children into this city-funded child-care program that picks up its students and delivers them home, that serves hot meals, that has four students to every teacher and that provides regular medical attention.
The answer is simple: All you have to do is have a child with AIDS.
As in the game of hide-and-seek, "this place serves parents as a home-free-all," said Carolyn Lelyveld, director of the Day Care Center at the Bronx Municipal Hospital Center. "A place where they can stop hiding and even joke."
As for the 22 children currently enrolled in the 20-month-old program, "it's about quality of life," said Barbara Weiss, the center's full-time registered nurse.
"A kind of safe haven," added pediatrician Dr. Henry Adam, the specialist in children's chronic illnesses who helped start what is thought to be the country's only day-care facility for children with acquired immune deficiency syndrome.
A report based on a statewide study of all infants born in November and issued this week showed that one in 61 babies born in New York City that month carried antibodies to the AIDS virus. In the Bronx, home to all the children at the day-care center, the figure was one in 43. Calling AIDS a leading threat to infant health in New York City, the study projected that nearly all the 1,000 babies born this year infected with the virus will be born in New York City.
"From our point of view, the numbers do not have to be this large for us to feel that we are important and that we are doing something that is very useful," Lelyveld said. "We certainly know that the numbers are growing, and they're growing in a disturbing way, and there are a lot of mothers or mothers-to-be who are at risk out there."
At the day-care center, the atmosphere is cheerful, filled with the children's colorful paintings and scattered with toys and educational play projects, including a miniature city of high-rises that the children have constructed out of cereal and toothpaste boxes. One morning, the air in what was once a tuberculosis ward was filled with the aroma of fresh pancakes, that day's make-it-together breakfast project.
In the big, sunny waiting room, the long-awaited arrival of a shipment of toys and educational supplies provoked curiosity and eager hands sifting through the cache of treasures. Thinking it might be a Christmas replay, 6-year-old Jocelyn (not her real name) asked, "Are they presents? Do they have names on them?" Like many of her classmates, Jocelyn is small for her age, but bright, alert and blessed with a huge and ready smile. But her voice is husky, betraying the thick, wheezing quality that often accompanies pediatric AIDS.
While most children tackled educational play projects, some slept in nurseries equipped with cribs and a healthy assortment of stuffed animals. One child, fussy this morning, clung to the arms of teacher Gary Fishman. Often, Fishman said, "There is a lot of acting-out behavior" among the children. "There's a lot more teacher intervention needed here."
Out in the hall, one of the older children, Rosalie, hands on tiny hips, was firmly asserting herself in a standoff with another teacher. One day, Lelyveld said, one of the students decided she had had enough day care, thank you, and calmly put on her coat and hat to leave for home--hours before the school was scheduled to be dismissed. "We stopped her," Lelyveld said, laughing.
AIDS, though not a banned subject, is seldom discussed or mentioned. "If a kid has a bloody nose, it's just a bloody nose, not an AIDS bloody nose," teacher Alwyn Thomas said.
Children Are Shielded
Except perhaps for the older, more sophisticated children--and even they do not talk about it--the students here are not likely to know what AIDS is, much less that they suffer from it. Skipping about the halls like students at any other preschool, the children are protected, shielded from journalists, photographers and other outsiders who might clumsily mention their condition. (The Times was allowed to observe the children, but not allowed to interview them or their families.)
"It's not something we ask, and it's not something we talk about," Lelyveld said. "We talk about being in the hospital, and being sick, and these kids all know they are sick from time to time."
They study ambulances in their educational curricula, and in play therapy, said social worker Naomi R. Buchanan. "The kids are always hooking up i.v.'s, things like that."
Within the comforting walls of the center, Buchanan said, "they are different, and they know they are different, but here it's an acceptable kind of difference, and they can live with it."
Launched with a $400,000 grant from the city, the center began as a pioneer effort to provide an educational environment for young children with AIDS. As is the case with any first-of-its-kind endeavor, it started with a long list of unknowns and only a handful of dependable data.
Public schools and conventional day-care programs often barred such children, easy targets for identification because of their high absentee rate. As children primarily of drug-using mothers who passed on the human immunodeficiency virus during pregnancy, many come from families too poor to consider child care. While existing institutions feared children with AIDS might infect the schools' healthy populations, the families and physicians of AIDS-infected children had their own concerns about how exposure to normal childhood illnesses might affect children with crippled immune systems.
That same possibility haunted organizers of the Bronx Municipal Hospital day-care center. What about cross-infection, they worried. What if these children, placed in a group environment five days a week, passed around their germs and viruses? If one child developed a cold, the flu, the measles, would its spread prove lethal in an immunosuppressed population? How would surviving children with AIDS handle the death of a peer?
Medical, Emotional Questions
As the center geared up for operation, some of the score of full-time staff members questioned the medical and emotional implications for themselves as well: Preschool children would not necessarily be toilet trained. Even the most normal of young children would be prone to the chewing, drooling and biting responses that physicians politely call "mouthing behavior." The working environment could prove intense, spending entire school days among children suffering from a devastatingly fatal disease. Would staffers fall prey to their own anxieties, even depressions?
One year into its existence, however, the center was reporting in its first report that such concerns were ill-founded.
"AIDS children," the report stated, "with careful planning and good supervision can participate in group programs without jeopardizing their health and, in fact, need opportunities for educational growth and development to occur."
Absenteeism has proved low. "We have one child who did attend the public schools and had a 50% attendance rate," Lelyveld said. At the center, originally designed for preschool but where age limits have been stretched to accommodate children as old as 9, Lelyveld said the same child has a 100% attendance record.
Rigid medical protocol, adhered to in a friendly, "nonintrusive" fashion, has dispelled the cross-infection argument. Along with individual medications, the children receive daily medical screening. An outbreak of chicken pox, for example, was identified immediately and as a consequence, proved benign.
Adam, known as Dr. Henry to his young AIDS patients, called the program's rate of hospitalization "reasonable," about one hospitalization per 9.2 months of attendance, "which is not unrepresentative at all for children with AIDS or ARC (AIDS Related Complex)."
In fact, Adam said, though he has no hard data to back up this possibility, "one of our gut feelings is that because we see the children every day, we are able to pick up incipient illness early and treat it before it has a chance to become life-threatening to the kids."
To preserve what he described as a "school setting, rather than a medical setting," Adam said medical examinations are performed playfully, with lots of laughter and cheer. "It's the best part of my day, going over there to play with the kids," Adam said.
"We try very hard to avoid doing anything that is in any way threatening or painful to the children in the school," Adam said. "If it involves needles or X-rays, I take the child away," over to the pediatrics unit of the hospital complex.
Dealing With Deaths
Out of 25 students enrolled since the program began, one boy has succumbed to AIDS. But he had been at the center only briefly, and so his departure prompted far less discussion than the deaths of two mothers of students in the program.
"One mother died in a hospital, which is a problem for us, because our kids go to the hospital a lot," said Lelyveld. Quickly, the staff embarked on a discussion about hospitals, "about how a hospital is not just a place where you go to die."
Then all the students spoke to the daughter in a group telephone call, Lelyveld said. "They had very matter-of-fact conversations," she said. Far from fatalistic, the students seemed intent on reassuring the girl, said Lelyveld. "It was important to them that she know that she had not changed even though her mother had died."
Trained in early childhood education, Lelyveld has worked extensively with children in hospitals. She has worked with child leukemia patients, and in South Africa, worked with cancer-afflicted children in black and white communities.
But AIDS follows few precedents.
"We are very new in doing this," Lelyveld said. "There are very few directors I can call, very few people I can call and say 'Hey, what do you do when. . . .' "
Conversely, there are few people with whom Lelyveld and her colleagues can share information gleaned at the day-care center. At first, for example, the facility was seen as "a place to make the best of the lives of these children in the short term," Lelyveld said. But as most of the children are living longer than originally anticipated, "our perceptions are changed by our experience."
Nationwide Toll Grows
The very newness of pediatric AIDS, identified just seven years ago, adds to its enigma. Across the country, at least 2,000 children are thought to suffer from AIDS, though that number is expected to grow with the recent change in the official definition of pediatric AIDS. Until just a few months ago, pediatric AIDS meant having an opportunistic infection, something from which uninfected individuals would not normally become ill, and having the HIV virus that causes ARC.
The definition, as issued by the Centers for Disease Control, however, has recently been broadened to include children who not only carry the HIV virus but have a lung condition peculiar to children's AIDS called PLH, or pulmonary lymphoid hyperplasia. Such a child, Adam said, "now has full-blown AIDS." What the new definition means to mortality rates, he added, is not known.
Often, when a child is terribly ill, definitions are all but irrelevant. AIDS, Adam said, is the exception, "because AIDS is a political and social phenomenon."
The family whose child has sickle-cell disease or kidney failure may turn to its church or other outside sources for succor and support. "That's not true for families that are suffering from AIDS," Adam said. "They feel the need to maintain secrecy."
For all involved in the cycle of pediatric AIDS, he said, "that's a very heavy additional burden."
Until relatively recently in the United States, when AIDS began to stalk women through heterosexual contact, the overwhelming majority of women who contracted the disease were intravenous drug users who passed the virus on to their children in the womb. Most fit a profile of poverty, confined largely to urban areas.
"It's a voiceless population, that's what makes it different," said Aviva Mayers, a social worker at New York Hospital who also works with children with AIDS. "The pediatric AIDS population are the children of a disorganized, stigmatized group of people who have not had a voice. They're last on the list to get services."
"When something is hard to face, hard to understand, the different parts of it are encapsulated," Lelyveld said. In the case of this invariably fatal disease, she said, "there is the gay AIDS, there is the drug AIDS, but the children's AIDS is not seen."
Support Group for Parents
The center's weekly support group gives natural and foster parents of children with AIDS the chance to help sift out the confusion, anger, guilt and anticipatory grief that often accompany the condition.
"We're helping them pull their strengths together and cope with the devastation that comes with AIDS," social worker Buchanan said. "What we are seeing is that we have now added to the burden of poverty a disease that is going to decimate families, and the system is not really dealing with it."
The center's staff members operate with a high level of information, with photocopies of medical journal articles and stories in the popular press circulating constantly. CDC medical guidelines are stringently observed, but never with the kind of fanfare that might make the young patients feel like pariahs. When contact with students' body fluids is even remotely possible, for example, rubber gloves are a kind of assumption. Quietly, staffers maintain a steady focus on realism, and the sober reason for their work is never in question.
But gloom and doom are nowhere in evidence, nor, as yet, is any kind of pediatric AIDS battle fatigue. "You really don't have that much time to think about it," Fishman said of the disease.
Yet, as in the adult population, AIDS shows no prospect of abating in children. "I'm afraid that we're the tip of the iceberg," Adam said. "What we're seeing today here, in the Bronx, and in Harlem and Newark is what is going to follow in San Francisco and other communities."
As a result, this pink-tiled day-care center may find itself a kind of national model. Inquiries have come in from other communities, and visitors have begun to examine the workings of what Lelyveld acknowledges is "not ordinary day care, although we like to be as normal and as every day as possible."
As their health shows signs of improving, some of the center's older children may be re-integrated into public school settings, thus helping to ward off fears on the part of Adam and others, that AIDS-afflicted children may be "ghettoized" into their own separate settings.
"The only reservation I have long term is a sort of concentration-camp environment where we lend credence to the notion that people with AIDS ought to be isolated and separated," Adam said. "One could argue that as data accumulate which prove that the risk from daily contact with very young children who have AIDS is nonexistent, is there any reason to have a day-care center for children specifically with AIDS?"
But for now, Lelyveld said, "these kids are not dying in six months. They are living and they are growing, and they need the same kind of chance at living and growing as everyone else."