A Motherless Generation : HIV-Positive Women Plagued by Fears of Their Children's Uncertain Futures

By SUSAN HOWLETT

April 25, 1993 12 AM PT

SPECIAL TO THE TIMES

The nightmare began for Tamara Lindley-Brown when the hospital called with the results of her HIV test. She was told to come in immediately.

“I knew what it meant,” said the young Costa Mesa mother. “If the test was negative, they would have told me over the phone.”

Feeling faint, she ran to the bathroom and vomited, then pulled herself together enough to get into the car with husband Gary and year-old son Joshua.

As she looked at her husband and baby on the way to the hospital, she didn’t cry.

“I didn’t want to let him see me like that . . . . I just prayed. I said, ‘God, do anything to me, but please save my baby. Let this be a sick joke.’ ”

Being HIV-positive was bad enough, but as a mother with the virus, Lindley-Brown has the rest of her son’s life to worry about.

She and thousands of other HIV-positive mothers are struggling with the same frightening issue--when they die, who’s going to take care of their children? It’s a question one shouldn’t have to ask at 32.

About 82,000 children nationwide are projected to be left motherless by the AIDS epidemic by the end of the century, according to a study released in December by the Journal of the American Medical Assn.

“Almost unnoticed, the (AIDS) epidemic has been responsible for the creation of a new, large, and especially vulnerable group of motherless youth,” the study reported.

“Unless increased attention and resources are devoted to this vulnerable population, a social catastrophe is unavoidable,” it said.

Recent figures released by the Los Angeles County Department of Health report that AIDS has claimed the lives of 171,890 nationwide, 35,356 in California and 1,557 in Orange County.

The World Health Organization estimates that 40 million people could be infected by the end of the century if the plague is not controlled.

HIV-positive mothers often blame themselves, no matter how they contracted the virus, leaving many of them in the shadows and unwilling to talk.

“The first thing I thought was ‘I killed my baby and my husband,’ ” said Lindley-Brown.

That sense of fear and guilt is what makes many women unable to accept their fate, leaving many HIV and AIDS cases unreported.

There have been 148 cases of AIDS reported by Orange County women, but the number is thought to be much higher. Many go to and from support groups, never sharing their fatal secret with neighbors, friends or even family members.

“Research estimates that the number of HIV-positive cases is actually eight times what is reported,” says Karen Jones, chairman of the Orange County Women’s HIV Task Force. She added that national statistics can be deceiving, leading many women to believe they are not at risk.

“Something people don’t realize is that the No. 1 mode of (AIDS virus) transmission for women nationally is IV drug use,” Jones said, “but in Orange County, it’s heterosexual sex.”

After learning she was HIV-positive, Lindley-Brown started calling friends and was devastated to learn that an old boyfriend had recently died of AIDS. “I felt betrayed and just dumbfounded,” she says.

He was a part of her past that seems a lifetime ago.

Lindley-Brown left home at 14, full of rebellion and attitude. “I thought my parents were unfair. Can you believe it? “ she says.

Now friends with her parents, Lindley-Brown and her husband are learning to deal with the unfairness of HIV.

“A lot of men leave their wives when they are HIV-positive. But he’s a rarity,” she says.

Gary’s eyes often fill with tears when he looks at his wife of four years. She calls him her “soul mate”--the guy with strong shoulders and a sympathetic ear.

“I just love her as much as I can,” he said.

Gary and Joshua have both tested negative for HIV but if her husband should test positive in the future, Lindley-Brown says she doesn’t know exactly who will take care of their son.

After their immune systems develop at a year old, only about 30% of the babies born to HIV-positive mothers will test positive for the virus.

“I’m very fearful,” she said, “My mom and dad and Gary’s parents assure me that he will be well taken care of, and I have a lot of friends around me, but it’s an uneasy feeling.”

That “uneasy feeling” is not an emotion unique to Lindley-Brown, for several Orange County mothers are staring at early death and the likelihood that their children will be raised without their mother’s love.

“Everything is in a rush,” explained Denise, a Costa Mesa mother with HIV, who asked that her real name not be used. “You want to have quality time all the time, and you feel so guilty.”

Denise learned she has the AIDS virus three years ago, after health problems led to an HIV test. She is already experiencing AIDS-Related Complex--an indication that her immune system is beginning to break down.

At 39, she lives in fear for her daughter’s future, and she worries about the discrimination that HIV has brought to the 8-year-old’s life.

“I have told my daughter about what I have, and about my illness, but it’s very hard,” she said. “I tell her not to be ashamed, and yet I tell her not to tell anyone. You may feel very rational about discrimination, but when it’s your child, you just want to kill.”

Special counseling is essential for the fragile emotions of the children of HIV moms, according to Donna Fleming of AIDS Services Foundation in Irvine.

“Like their mothers, these kids suffer a large degree of isolation,” she said.

Last week, the AIDS Services Foundation started the Kids Club, an eight-week support group for children who have a family member or loved one with HIV, Fleming said. However, similar programs are rare, leaving these kids the forgotten link.

The program consists of group discussions between counselors and about a dozen children, 6 to 12 years old, whose lives have been touched by AIDS in one way or another, Fleming said.

Anger, sadness, fear and disbelief are emotions that are addressed in the session, she said.

“It’s a safe place where it’s OK to talk about it. That’s the bottom line. We’re giving kids a place to express their anger,” she said.

Denise says the last few years have been a dark ride on “an emotional roller coaster.” She never makes plans more than six months ahead--a form of “weird arithmetic” she uses to prepare for the onset of crippling AIDS symptoms.

“You live with this feeling . . . when anyone else has a cold, they’re going to get better,” Denise said, “When I get a cold, I’m absolutely scared.”

Denise’s boyfriend and eight brothers and sisters will be able to care for her daughter when the need arises, and she has come to terms with her uncertain prognosis.

“For the moment, I’m OK,” she said, “I’ve done a lot of bargaining with the illness, but now I’ve come to a point where I accept my disease . . . . You have to hope for the best.”

Flanked by her husband, Lindley-Brown admits that her life also is in a frustrating state of limbo. But she says people are amazed by her boundless energy and positive outlook.

“I’m a fighter,” she said, “I’ve got to fight every day so that I can go to (Joshua’s) graduation.”

She and her curly-haired toddler are joined at the hip these days, and the young mother feels she has to cram a lot of life and knowledge into her little boy.

“I find time so precious now, and have to teach him things more quickly,” Lindley-Brown said. “I take him everywhere, taking the time to put him on my lap and point things out to him.”

One of the toughest things is seeing other mothers with HIV that she’s gotten to know over the past year who are dying.

Their gaunt appearance and exhaustion portend what may lie ahead--for Lindley-Brown’s immune system is already showing signs of deterioration.

“I have three friends, and I’m watching them die,” she said, “When that happens, it feels like someone’s squeezing and pulling your heart out.”

Said Denise, “My daughter is going to have to watch this . . . me growing old, getting so sick, and dying,” Denise said, “You’re on a time clock from now on.

Where to Get Help

AIDS Services Foundation

17982 Sky Park Circle, Suite J

Irvine, 92714

(714) 852-1010

HIV Women’s Voices

P.O. Box 4671

Laguna Beach, 92652

(714) 253-1507

Orange County Health

Care Agency

HIV testing information