California's Starcross Community Helps the Littlest Victims of AIDS Savor Life in the Shadow of Death
updated 12/12/1988 AT 01:00 AM EST
•originally published 12/12/1988 AT 01:00 AM EST
Passing a shed where wreaths are made, the group enters a barn in which a stained-glass window looks down on a small chapel decked with flickering candles. Brother Toby McCarroll, Sister Marti Aggeler and Sister Julie DeRossi gather the children close and soon have them clapping gleefully and singing "He's Got the Whole World in His Hands." Downstairs on bales of hay sit piles of pumpkins, including four inscribed with the name of each of the children here: DAVID, RACHEL, MELISSA, BETH. Set apart from these sits another pumpkin, also bearing a name: AARON.
Aaron, like Rachel, 3½, Melissa, 2, and Beth, 6 months, was born infected with human immunodeficiency virus (HIV), which is the principal cause of AIDS. At Christmastime last year, 19 days after his first birthday and just as his first tooth was emerging, Aaron died of AIDS-related pneumonia.
It was, unhappily, not a unique occurrence. The Public Health Service estimates that 3,500 children under age 13 suffer from AIDS, almost all of them born to mothers infected with HIV. By 1991, pediatric experts predict, as many as 20,000 children may be infected with HIV. Of these, 20 to 30 percent will develop AIDS within five years of becoming infected. Since the mothers may be intravenous drug users and are often debilitated by AIDS-related diseases, most babies with AIDS become wards of the state and languish in a succession of hospitals and ward-like group homes. Many die within five years. "It's very unfair to a child who may not live that long to be shuffled around from hospital to hospital," says Sister Marti. "Are the children going to live in a bubble or are they going to have some quality in their lives?"
Assuming some of the responsibility for providing an answer are Brother Toby, 57, Sister Marti, 49, and Sister Julie, 41, lay Catholics who have taken private vows of celibacy and poverty, and who call themselves the Star-cross Community. They met in the late 1960s at the Humanist Institute, a San Francisco spiritual growth center that Brother Toby describes as "part of the energizing and often wacky phenomenon known as the human potential movement." McCarroll, a lawyer by training, was the institute's director. Aggeler, a former airline stewardess, was its administrator; DeRossi, a social worker-turned-teacher, took part in seminars at the institute. All three had been married and were on a spiritual quest, says Brother Toby, "to find the sacred in the ordinary." When the institute dissolved in 1976, they sold the San Francisco house that had been its headquarters and bought land in Annapolis, in the coastal farm country of Sonoma County, for a monastic retreat.
To support themselves, the Star-cross family began growing Christmas trees and weaving wreaths. To fulfill their need for public service, they also sheltered and raised, for varying spells, a total of 17 neglected, abused or disabled children from the San Francisco area. But nothing could have prepared them for the adventure of caring for small children with AIDS, which they began in January 1987. "We have learned to grow in the shadow of death," says Brother Toby, who describes their work in his recently published book, Morning Glory Babies.
Until they happened to see a TV news report on babies with AIDS in February 1986, the Starcross family knew almost nothing about the impact of the disease on small children. "It's one of those things that hit you so hard you can't go on without responding," says Sister Marti. "We didn't know what we would be able to do, but we knew we had to do something."
Just a month earlier, Sister Marti and Brother Toby had adopted David, a healthy newborn whose mother was too young to care for him. After seeing the TV program, the group decided to take in children with AIDS. Their pediatrician tried to dissuade them, since their farm is a two-hour drive from the nearest hospital. But a Santa Rosa AIDS specialist, Dr. Marshall Kubota, encouraged them. "We have no cure, so what's the big deal about being close to a hospital?" says Kubota, who now gives the Starcross children monthly examinations and resistance-building gamma globulin treatments. "What Starcross has to offer these children—raising them in a wonderful environment with love and the companionship of other children—outweighs what our present medical facilities have to offer."
Buoyed by Kubota's support, Star-cross invited neighbors to a meeting at the farm that August to "share our plans, which had the possibility of being controversial," says Sister Marti. Few showed up, but a month later the San Francisco Chronicle ran a front-page story about the Starcross plan, sending a wave of apprehension through the Annapolis area. An uneasy crowd of 100 attended a meeting called by a worried neighbor at the local grade school. Brother Toby recalls that just as "a small, loud, very macho clique was preparing to attack us for bringing AIDS into an uncontaminated area," a respected resident of the area rose to defend the group, explaining that her own brother-in-law had AIDS and that her family had attended an AIDS-education class and were no longer "afraid of getting it.... There is," she declared, "too much ignorance in this room!"
That was a turning point, but Star-cross's troubles were not over yet. Soon afterward, the Sonoma County Department of Social Services attempted to revoke Starcross's foster-care license but failed when the county's Board of Supervisors intervened on Starcross's behalf.
After the arrival in January 1987 of the first baby with AIDS, 5-month-old Melissa, the hysteria began to subside, thanks largely to sympathetic coverage by local newspapers and TV stations. People began dropping by the farmhouse to baby-sit or help with chores. Still, the local dump refused to allow Starcross to dispose of its garbage until Steve Parker, director of the AIDS Project of Sonoma County, personally delivered their dirty diapers to the dump and assured the workers they were not at risk.
Born addicted to cocaine and heroin, Melissa had already overcome one attack of pneumonia before arriving at Starcross. A psychologist in the hospital where Melissa had spent her first few months had described the little girl as "a frantic, desperate infant...who did not smile." Sister Julie began coaxing the baby to eat and carried her around all day in a backpack, talking to her while doing her chores. Three months later the same psychologist said Melissa had "a lovely social response, smiling at her own reflection, enjoying frolic play."
"We didn't do anything special," says Brother Toby. "We provided stability, love and the adventures of an ordinary day."
Aaron and Rachel arrived at Starcross in October 1987. Rachel was 2½ years old but had spent her entire life in a hospital room and could not walk or talk. She had never seen the sky or played with another child. Even sunshine frightened her. "Almost every hour we introduced her to something fun," says Brother Toby. "The swing, the apple blossoms. It felt like we had just freed a hostage."
The Starcross family keeps in touch with their babies' mothers, the youngest of whom was only 16 when her child was born. Melissa's mother visits her away from the farm and regularly receives photographs of her child, whom she now refers to, when talking to Sister Julie, as "our daughter." Beth, the group's fourth child with AIDS, came to the farm after her mother discovered during prenatal testing that she was infected with HIV and that there was a 30-to 60-percent chance she would pass it on to her baby. Knowing she would be too ill to care for her child, she called an adoption agency which then referred her to Starcross. Sister Julie agreed to adopt the baby herself, and at the mother's request attended the delivery. "I've discovered that these women are not cruel or heartless," she says. "It's just tragic circumstances that get them into this situation."
Aaron's teenage mother tried at first to care for her son, who was sick from birth and spent his first six months in hospitals. Ultimately, she decided she could not handle the emotional or financial strain and asked a social worker to find a loving home for the boy. When the 9-month-old arrived at the Starcross farm, "a suitcase of his medications weighed more than he did," says Brother Toby. Though Aaron gained enough strength to enjoy playing with the other children and was dressed up as a baseball player for Halloween, he had recurring neurological problems. Last December his breathing became labored, and the family called an ambulance. The local fire department failed to respond, a fire fighter later explaining, "I was under the impression these babies didn't have long to live anyway." Another fire company brought Aaron to the hospital, where, two days later, he died.
The other children were too young to talk about their feelings, but Sister Marti remembers them looking for Aaron in his crib. Sister Julie recalls that David kept asking where was "Bau-by."
"Aaron's gone," they told him, as gently as they could.
As David, Melissa and Rachel play in a turtle-shaped sandbox behind the farmhouse, it is impossible to tell that two of the children are fatally ill. "I think people have an image that the virus makes the kids sickly and weak," says Sister Julie. "But most of the time they are well." Still, David is more than likely to outlive them both, and the effect that may have on him is a matter of concern to his Starcross family. "How do I explain to him that all his playmates will die?" Sister Marti tearfully remembers thinking one day. "But then I asked myself, how would I explain to him when he is older that, because we wanted to protect him, we did nothing as thousands of children were left in hospitals to die?"
—Bonnie Johnson, and Cindy Ruskin in Annapolis, Calif.