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


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.

Tina hasn't been out of the house much, she confides to Butz. She's reluctant to walk, even as far as the bus stop, because she doesn't have much strength in her thin legs. Tina is happy to be part of the Hopkins study, she says, because Tommy "gets a lot of help" from the clinic and home visits. "He listens and he does a lot for her [Butz]; he does real good for her."

Tina, too, has taken some hope from the people she has met through the study and at Hopkins' clinic for adult AIDS patients. "I've come a long ways," she says, since learning she had the AIDS virus while pregnant with Tommy. For a while, "all I'm thinking about is dying."

When Tina learned that her son was not HIV positive, "I said, 'Oh, praise the Lord.' That was a big relief," adds the 30-year-old woman, who also has three daughters. Tommy was 10 or 11 months old when his AIDS test showed he did not have the virus.

The test used assumes that if antibodies are present the disease is present. And because all babies inherit antibodies from their mothers, it's impossible to determine if a child is infected until he develops his own antibodies and sheds those from his mother, explains Hutton, who oversees treatment of all pediatric AIDS patients at Hopkins.

This may take as long as 18 months in some children, she says.

Only 10 youngsters have tested positive so far, says Butz. The infected babies are put on the drug AZT as soon as the virus is detected.

A baby can get AIDS from its mother either during pregnancy or at the time of its birth through the mother's blood, Hutton explains. Why some infants don't get AIDS is not completely understood. "We presume that the placenta is very protective," she says.

Those babies who did not inherit the disease from their mothers "will be healthy children; their chances of being a healthy person will be good," says Butz.

One of those children is 18-month-old Christine, whose AIDS test turned positive late last year. "She beat the odds; she's negative now; she can have a normal life," says her mother, 25-year-old Andrea, who is HIV positive. (Not their real names.)

The negative AIDS test "was a relief. I worried that she was going to get sick," says Andrea, who has two other children. Even before that diagnosis, Andrea took some comfort in being part of the Hopkins' study.

She finds the home visits heartening. "Arlene [Butz] reassures me that she's growing OK," the woman says of her daughter. "I like that." She also likes being able to take Christine to the Hopkins' clinic -- even without an appointment -- for ear &r; infections, colds and other childhood maladies that crop up between regular visits.

Andrea, too, has found support from the nursing study team. They "adopted" Andrea and her family at Christmas, bringing enough food and gifts "for three families," she says.

A student nurse who worked with the team is godmother to Andrea's middle daughter. Andrea's social worker is trying to find her a home away from the high-rise projects where she lives.

And her own spirits have been buoyed by others' concern, she says. "It means a lot for someone to care about you. The more love you get, the more willing you are to fight."

The mothers and babies of the study

THERE ARE 160 babies in the Hopkins study of infants at risk of getting AIDS from their mothers. They have all been born since July 1988; 84 were born to HIV-positive mothers.

* Only about 40 of the 84 babies born to HIV-positive mothers are old enough for the infection to be determined.

* Ten of these 40 infants are HIV positive. This is consistent with other such studies, says Arlene Butz, the study's coordinator, although much lower than expected when the study began.

* No babies in the study have died.

* The HIV-positive babies have been somewhat sicker -- and hospitalized more frequently -- than babies not infected; when they are admitted to the hospital, it was usually for an infection. The positive babies are not, however, as sick as many children with other chronic diagnoses, says Dr. Nancy Hutton, who works with pediatric AIDS patients at Hopkins. Yet, "that is not to say that in a few years they won't be sicker."

* Developmentally, Butz suspects, the HIV-positive children are beginning to lag behind healthy youngsters, but the findings are too preliminary for the researchers to be confident of them.

* 68 percent of the infected mothers contracted the virus through intravenous drug use; 23.8 percent from a sex partner.

* 17.5 percent of the HIV-positive women in the study have become pregnant again.

L * Two mothers have died: one a homicide; one from pneumonia.

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