AIDS victims' other problems The urban poor are frequently confronting more immediate things than a fatal disease

February 12, 1991|By Mary Maushard | Mary Maushard,Evening Sun Staff

ARLENE BUTZ and Dr. Nancy Hutton could not have guessed at the results of their three-year study of babies at risk of catching AIDS from their mothers.

Not the research results. Those are yet to be determined.

It's the Christmas trees, the warm dinners, the child-care arrangements and the taxi fares.

It's the bonding among the care-givers and the care-takers, women from radically different backgrounds and circumstances.

It's the realization that as horrible as AIDS is, other problems -- such as finding a place to live -- overshadow the disease in many families.

Those are the results no one predicted.

Hutton and Butz set out, with several nurse practitioners and social workers from Johns Hopkins Hospital, to follow a group of children at risk of AIDS. The goal: To determine the health risks of HIV-positive children and to compare the risks with those for children who are not infected.

And, from a nursing standpoint, the team wanted "to learn about the disease and to understand the psychology of people who become HIV positive,'' says nurse-midwife Jenine Woodward.

The study is being paid for by a $100,000-a-year grant from the National Center for Nursing Research. The grant will expire this summer; Hutton and Butz are searching for money to keep the project going.

Slightly more than half of the 160 babies in the study have mothers who are HIV positive, says Butz, an assistant professor in Hopkins' School of Nursing and the study's coordinator.

All the children were born at Hopkins to mothers determined to be at risk of having AIDS. The infants were tested for the disease -- with their mothers' consent -- soon after birth.

The majority of the women in the study are from poor, urban families. About 90 percent are black; about two-thirds are drug users; most are single mothers. The median age is 26; most have other children.

The heart of the project is regular clinic visits, beginning when the infants are only a week old, coupled with home visits every other month.

It is from those contacts with the mothers -- those with AIDS and those without -- that surprising findings, and results, have emerged.

''I think the home visits are like a safety net,'' says Butz. Although designed to check on the child's health and development, the visits have confronted the health-care workers with ''a lot of other problems that have nothing to do with being HIV positive.''

Butz and her co-workers have discovered families without furniture, AIDS-infected mothers needing help with their children, mother who did not bring her baby for his checkup because she had no way to get there.

The threat of AIDS, Butz has found, "may be the least of their problems. Housing is the biggest," she says. Since the study began, two-thirds of these families have moved. Butz has even been known to drive through patients' neighborhoods looking for them.

"We are able to look at the barriers to health care and come up with creative ways to get through those barriers," says social worker Gayle Gilmore.

"When you come to the house, it's not the nurse, it's your nurse," says Woodward, who visited many of the families. "There is truly a bond."

Nurse-practitioner Mary Joyner remembers an HIV-positive mother whose child missed several clinic appointments. When she finally came, "the first thing she said to me was 'I thought you were going to be a mean doctor.' That told me a whole lot about what that lady's experience had been," says Joyner.

On a wintry morning not long ago, Butz's first stop is an East Baltimore row house. There, she visits 13-month-old Tommy, a ++ bright, busy child who is not infected with the AIDS virus, although his mother, Tina, is. (Tommy and Tina are not their real names.)

From her bag, Butz produces a stethoscope, a tongue depressor and some small toys for testing developmental skills. She chats with Tina, while casually examining Tommy as he plays nearby.

Tommy pulls back from the stethoscope; it's a little cold against his chest.

The small Pegboard is more to his liking.

Butz asks Tina what her son is eating, how much milk he drinks a day, what words he says, how long he's had this congestion and what she's doing for it.

Tina assures Butz that she watches Tommy closely. "I don't have no problem with him being sick. He does real good," she says.

Butz's next question is about Tina.

''How are you feeling?'' she asks.

Then, ''Are you drinking the supplement?''

(AIDS-infected patients often have no appetite, Butz explains later, and are given a calorie-rich food drink to help them maintain or gain weight.)

''How are you going to get to the clinic? We'll give you money for a taxi to go home.''

But Tina won't need that. A friend will take her and Tommy.

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