Woman ill with AIDS seeks home for her child 4-year-old also has the disease


Catherine Williams calls her only child the "sparkler" who brightens her life. She wants nothing to dim her 4-year-old's spark, not even the imminent loss of a mother.

At 37, Ms. Williams has AIDS. She uses her waning strength and dwindling time trying to find a home for her child, who also has AIDS, battling a foster care system she finds ill-equipped to deal with parents in her situation.

"Stress and trauma from my death could be devastating to her immune system," says Ms. Williams, who uses her daughter's middle name, Elizabeth, to protect her from discrimination. "If she already is placed in a loving family, it would be easier for her."

The Frederick County woman's problem echoes the case of a New York mother whose plight recently drew national attention.

The story of Rosemary Holmstrom, a 34-year-old mother with AIDS, was picked up by newspapers across the country when she told the New York Daily News how she is estranged from her family, wary of the foster care system and trying to find a home for her 8-year-old son.

Hundreds of people responded. Ms. Holmstrom has met prospective families who might adopt her son, and is considering several. The child, however, has been teased and shunned at school by other children.

By the year 2000, the United States will have 80,000 AIDS orphans, and probably 20 percent of them will be infected with HIV, the virus that causes AIDS, according to a recent study by the Centers for Disease Control. The study did not include breakdowns by state, and Maryland does not have estimates of its own.

"The number of children and adolescents made motherless by the AIDS crisis in the United States is large and rapidly increasing," the study says. "There is ample evidence to warrant immediate action. Children already orphaned cannot wait for the normally slow policy process to take account of their complex needs."

Ms. Williams cannot wait, either. She is fiercely determined to find foster parents and build a relationship with them while she lives. She says she will not hand Elizabeth over to strangers.

But Ms. Williams, a former state social worker with more than a decade of experience in foster care, says she can find no program in Maryland to help terminally ill parents ease the transition for their children.

Ms. Williams believes she contracted AIDS during a relationship that she ended in 1987 when she discovered the man was a drug abuser.

"We were both from small Frederick County towns," recalls Ms. Williams, who says she has never used drugs. "I didn't suspect any problem. I was lied to."

Ms. Williams didn't trace the source of her illness until 1991, when she was having health problems. A blood test proved positive for HIV. She learned that her former lover had died of AIDS the previous year.

The news was particularly devastating because by then Ms. Williams had given birth to Elizabeth, the daughter of a man to whom she had become engaged in 1988.

She and Elizabeth's father lived together for nearly two years. They never knew Ms. Williams was carrying the virus, and Elizabeth's father did not contract the disease. But the relationship failed, the couple never married and they separated not long after Elizabeth was born in January 1989.

"I have always been solely responsible for my child," Ms. Williams says.

Ms. Williams says when she tested positive for HIV -- on the eve of her 35th birthday -- she suspected immediately that Elizabeth, then 2, also was infected.

"I was seriously exhausted and suffering from . . . symptoms common to women with HIV," she says. "Elizabeth had chronic ear infections and the most frightening diaper rashes."

For nearly two years, as the disease devastated her immune sys

tem, Ms. Williams has struggled to keep herself and her daughter well.

"Mercifully, I have met people at their best," she says. "I also have met the absolute worst, willfully ignorant people who treat AIDS patients like animals. I won't tolerate that treatment. It means we deserve it.

"I am proof positive that everyone is at risk," says Ms. Williams, who has a master's degree in social work and serves on two boards at Johns Hopkins Hospital.

Elizabeth remains relatively healthy and is developing normally. Her mother, however, is fighting several AIDS-related infections and counting her own life in months.

"I have to operate on a realistic level," says Ms. Williams. "I haven't given up, but there won't be a cure in time to save me. I'm not going to survive, and Elizabeth is going to last longer than me.

"She knows I'm sick and that she has the same bug, and we have talked about my death. She won't understand permanent loss until she experiences it, but she knows Mommy is going away permanently."

When Ms. Williams was diagnosed with full-blown AIDS in May, she says she "really panicked and started digging deeper" to find a family for Elizabeth. She retired from state employment on disability, knowing she "would be on a roller coaster with erratic health." But so far, her search for a foster home has proven fruitless.

She says she didn't even bother trying to place Elizabeth through the state's Department of Social Services because she knows from her years as a social worker that the policy is to insist on a family member taking care of the child.

Ms. Williams has a list of reasons why family is not an option in her case.

She says she and the child's father, who does not pay child support, have agreed that it is best if Elizabeth is adopted because he is suffering from cancer and asbestosis.

"If he took her and died, it would be a double trauma for her," she says. The father, like other members of Ms. Williams' family, declined to be interviewed.

Elderly and ailing grandparents pose the same dilemma, Ms. Williams says, as they would be unable to handle such a seriously ill child.

Elizabeth's father has a 21-year-old daughter from a previous marriage who is helping to care for her half-sister now. Ms. Williams' will names the young woman as Elizabeth's guardian, in case her efforts to locate a family fail.

But Ms. Williams fears that arrangement may not work, particularly since the 21-year-old is a newlywed and likely to have children of her own soon.

"When she has her own children, what will happen?" she asks. "I hope she has not bitten off more than she can chew."

Lillian Lansberry, coordinator of the Maryland Adoption Resource Exchange, the state agency that handles foster care placements, confirms that the state's first choice is to place the child with a family member.

But she says even if Ms. Williams overcame that obstacle, she might have trouble with a state placement because she insists on establishing a relationship with the family that takes her daughter. Adoptive parents often do not want to meet the birth parent, Ms. Lansberry says.

"People on the other end have choices," she explains. "We can be a resource and we are willing to work with her, but she has to be willing to go along with our program."

Given her concerns about the state's program, Ms. Williams turned to Family and Children's Services, a private, nonprofit adoption agency.

But Ms. Williams says negotiations there broke down when that agency also insisted Elizabeth be placed with a family member. "The agency had no respect for my judgment," she says.

Betty Kavanaugh, the agency's director, says Family and Children's Services policy is not to discuss individual cases, but she acknowledges that they do push for a family member to take the child.

Ms. Kavanaugh adds that Family and Children's Services does have a foster-care program for children infected with HIV and has had "no difficulty finding homes" for them in other cases.

She says a person in Ms. Williams' circumstances, facing problems with a family placement and determined to get to know the adoptive parents, is better off trying to arrange a private adoption.

Frustrated with traditional placement agencies, Ms. Williams expanded her search. She contacted ministers and AIDS support groups, and even appeared anonymously on a syndicated TV talk show -- all to no avail.

Ms. Williams says she is convinced that what the state needs is a central repository listing AIDS parents who need foster care and those willing to provide it, so people in her situation can find help.

"If I had the money, I would set up a data base myself," she says. But reduced income and medical bills have devastated her finances.

In Maryland, she says, virtually all money for AIDS goes to research, and very little to other services, such as foster placement.

Such services, however, do exist elsewhere in the country. In Los Angeles, fledgling movements like Children with AIDS Project of America are trying to match parents with AIDS with foster families.

"I get 30 to 40 calls a day from dying parents who want to meet a family for their children," says Patricia Porter, who helped found the project. "If it keeps up, we could become a nation of orphanages."

"There are more dedicated families willing to take these children than I ever thought possible," but not enough to meet the need, she adds. "The government needs to do more and faster."

Ms. Williams says she will continue to work for the peace of mind of AIDS-ravaged parents and the thousands of little Elizabeths "who cannot make a way for themselves."

"I never realized how hard-headed I was until I took on this fight," she says. "I found my voice and I have more motivation than most people."

She is writing to first lady Hillary Rodham Clinton and Marian Wright Edelman, founder of the Children's Defense Fund, hoping to enlist their help in the battle.

"I agree with Ms. Edelman," she says. "We don't have a single child to waste."

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