Growing up with HIV

CHICAGO - A little more than a year ago, LaToya Rodgers, who was in the hospital for tests, was spending a typical evening gabbing on the phone with her friends from Merrillville High School in Indiana. Within hours, the 18-year-old was in a coma, induced by doctors at the University of Chicago Comer Children's Hospital after she suffered a severe seizure.

The seizure was the result of the human immunodeficiency virus, or HIV, which in this case caused HIV encephalitis. The crisis would come within a hairbreadth of killing Rodgers.

Rodgers is one of the 6,000 or so U.S. children and young adults who received the AIDS virus from their mothers around the time of birth and are today living with the consequences. Medically fragile, they inhabit a dangerous twilight world where they not only struggle with the fact that they have an incurable, often fatal disease, but in most cases agonize over whether to disclose their illness in view of its continuing stigma. Even if their health remains stable, they face an uncertain future in which a normal life, including the possibility of forming romantic relationships, is seriously in jeopardy.

One such individual is Mary, 22, a lively Chicago college junior who asked to be identified only by her middle name to avoid identification. Mary, who was born with HIV, has never told anyone outside her immediate family that she has the virus. She worries about how to inform friends or a boyfriend that she is infected.

"It is hard because I don't know how to go about doing it, except just saying
it," she says. "It may be time that I started talking about it." But so far, she has not mustered the courage.

People like Mary and Rodgers are alive primarily because of a major medical advance just over a decade ago that saw the development of anti-viral drugs and other medications that have changed HIV infection and AIDS from a likely death sentence to a treatable, chronic disease.

The same advance has caused the number of birth-related HIV infections to plummet. In the early 1990s, an estimated 1,700 babies were born each year in the United States with HIV that they had acquired from their infected mothers. Today, fewer than 150 children are born annually with the disease. Treatment of infected mothers with the drugs during pregnancy and childbirth, plus administration of the drugs to their babies and the elimination of breast-feeding, has caused the rate of transmission from mother to newborn to drop from 25 percent to less than 2 percent.

Dr. Ram Yogev, a founder of the HIV program at Children's Memorial Hospital in Chicago, recalls the feeling of futility he experienced when HIV-infected babies began showing up shortly after the dawn of the AIDS era.

"These children first appeared in our clinic in 1984," Yogev says. "By the late 1980s, they had a life expectancy of three or four years, and by 1990 they lived to be 8 or 9."

He breaks into a smile as he says, "It is unbelievable that we now have had them for such a long time. Instead of going to a funeral once a month, I am going to graduations and weddings."

In many ways, Rodgers epitomizes the first generation of HIV babies to come of age. But in one important respect, she doesn't. Her HIV status is public knowledge.

Soon after Rodgers' birth in 1988, her great-aunt, Jeannie Tapley, of Gary, Ind., received a phone call telling her that Rodgers' mother had been hospitalized with what was believed to be multiple sclerosis. Upon her release, Rodgers' mother left with her two older children, leaving Rodgers with Tapley. She said she was too ill to handle an infant.

The Tapleys were delighted to have the baby and became her legal guardians. But trouble was ahead. When Rodgers was 2, her lymph nodes and tonsils became enlarged. Two weeks later, the Tapleys were told that baby LaToya had tested positive for HIV.

Rodgers was put on the main drug available at the time, AZT, which reduced the amount of virus in her body. She also received daily gamma globulin injections to strengthen her immune system.

Tapley decided not to make a secret of Rodgers' affliction. Her justification was that the community needed to be more understanding about HIV and AIDS.

So when Rodgers was 2, after paramedics taking her to the hospital for a high fever refused to touch her or take her vital signs, a furious Tapley called the local newspaper. An article ran in which Tapley castigated the EMTs for their behavior. Then another story about Rodgers' HIV status, along with her picture, ran in the paper when she was in second grade.

Some of Rodgers' classmates began calling her "the AIDS girl" and would not play with her. "I used to go home crying," she says. Eventually, she convinced the other children that they could not catch the virus simply by being her friend. She didn't have a problem after that.

A constant burden

On the other side of the disclosure divide is Mary.

When Mary was in sixth grade her mother left home, going on to die of AIDS. Mary's grandmother took over her care, along with that of her younger half-sister, who does not have HIV.

When Mary turned 21, she reluctantly had to transfer to an adult infectious disease physician. For 15 years she had been treated by Dr. Kenneth Boyer, chairman of pediatrics at Rush University Medical Center. Says Mary: "I didn't want to stop seeing him. He knows everything about me."

Boyer says Mary has a tough time with what HIV infection means for her sexuality and interpersonal relationships. "This is a constant and a very tough burden to carry around," he says, adding, "The stigma of HIV can be a potential nightmare, if it is known."

Outwardly, Mary is flourishing. A vivacious woman who has done modeling, she is adamant about getting good grades, is an activist on campus and works part time. She plans a career in health care or corporate communications when she graduates. She also wants to help children with autism.

Mary remarks on how much she'd like to change the public perception of those who live with HIV. "It is irritating that some people think that the only person who can survive HIV is Magic Johnson," she says, adding: "I am hardly ever sick. I take one pill a day, like a one-a-day vitamin. I don't think I have a bad thing. I am really cool, a smart college student. I don't think about HIV. It is just a part of who I am."

But she can't lobby for HIV patients if she doesn't come out. And, "No one knows I was born with HIV, not even my whole family."

There remains the vexing problem of how to broach her health status to a future romantic partner. She is not sexually active and says she's not ready to become so any time soon.

Dr. Robert Garofalo, director of adolescent HIV services at Children's Memorial, which treats 150 young patients who were infected perinatally, calls children born with HIV "a forgotten group."

"They don't have many peer groups. The youth who are born with HIV have very different issues with their family, parents and mothers. But like all adolescents, they are still struggling to establish autonomy from their parents, to understand their emerging sexuality," Garofalo says.

Disclosure is a huge problem in other ways. In some cases, parents don't even tell a child that he or she has the virus. Often by the time they tell their children they are infected, they are not surprised, says Lori Wiener, coordinator of the National Cancer Institute's Pediatric HIV Psychosocial Support Program. "For those who have not been told upfront, the lie continues to affect the relationship. ‘What else are you not telling me?' Wiener adds that "those who have done the best psychologically are those who have people in their lives that they share their diagnosis with and can talk to openly."

Chance for normal childhood

Despite the progress in reducing the number of children born with HIV, Yogev and others say there are still problems. Close to 35 percent of U.S. women who carry the HIV virus are unaware of their condition going into labor. A year ago, the Centers for Disease Control and Prevention launched "One Test, Two Lives," a campaign to make HIV testing a routine part of all prenatal care. About 20 states have passed laws that promote such tests.

Another wrinkle: Women can be free of virus when they discover they are pregnant, but can become infected during pregnancy. For that reason, some hospitals schedule a second test just before the baby is delivered.

In any case, there remain women who get little or no prenatal care. Often they are from economic strata where HIV is common. For this reason, it will be difficult to get the number of HIV births down to zero, experts say.

When the AIDS epidemic first began, it was viewed almost exclusively as a disease of gay men. Almost no one gave a thought to children catching it. In the mid-'80s, Terry Rucker, a hospice nurse, was working with AIDS patients at Illinois Masonic Hospital when she heard there were children infected with HIV. She and her husband decided to adopt one. "Our plan was to give a baby a home and help the baby die comfortably," she says. Their first child was 5-yearold Tony.

They then were asked to take in a 7-year-old foster child who was quite sick. The boys didn't seem to get along, but when the older one was dying at Children's, he asked to see Tony. "Thank you for being my brother," Rucker recalls him saying.

Six-year-old Faith was the next child they adopted. After attending funeral services for an HIV-infected friend, Tony and Faith quizzed Rucker about funeral arrangements. When Rucker said people can decide what they want, Tony said he did not want to be buried with his shoes on, and Faith said she wanted to be dressed as a princess and have balloons with ‘Bye' written on them. Faith died in 1995, a year after Tony.

"You knew there wasn't going to be a long-term future," Rucker says.

But the lives of today's HIV children "are close to that of average, normal kids," Rucker says. "They do have some major problems. Many have learning disabilities, perhaps because many of their mothers were drug users. They also have emotional and adoption issues. But as long as they follow medical protocols, their health is much better."

From age 3, LaToya Rodgers had never been hospitalized. But in October 2006, she suffered the seizure that led to her being intentionally placed in a coma. For a month and a half, she lay attached to tubes and machinery.

Doctors did not expect her to survive.

When her condition began to improve, the staff tried to wean her from her breathing tube. Eventually, she opened her eyes. One day, she got out of bed.

It took a long time for Rodgers to get better. An honor student, she could not go back to school because she had lost much of her memory. She had to relearn her ABCs.

Several months ago, as she got stronger, Rodgers decided she could manage to give a speech on HIV at a high school.

She told the students about her life, about taking "a whole bunch of pills, about a dozen pills a day." Then she looked out at them, and her trademark smile faded. "HIV is not a joke," she said.