Women Living With AIDS By Barry Yeoman Originally published in Glamour, August 2001 WHEN AUTUM AQUINO WAS BORN IN 1985, she was already infected with the AIDS virus. Although she was a sickly baby, the disease wasn't formally diagnosed until she was two years old. At that point, her doctors didn't expect her to live to see her third birthday. At age seven, she watched her mother die of complications from the AIDS virus. But Autum has so far defied the odds: Today, at 16, she is delighting her family by performing in school plays and hanging out with her friends, and she is one of the oldest living females in the United States who was born with AIDS. When Nicole McCabe was four years old, her family became the focus of a nationwide media frenzy. The grim reason? Her stepfather, a hemophiliac, her mother, a nurse, and her baby brother had all been diagnosed with a mysterious and deadly new disease. At a time when most Americans saw AIDS as a "gay disease," the family became the mainstream embodiment of AIDS—and proof that it can afflict anyone. Sixteen years later, Nicole and her mother—who is still very much alive—are working to educate people about the continued risks of the disease and to keep the AIDS crisis in the public consciousness. Twenty years after the first case of a woman being infected with AIDS was reported, there is still no cure—but there is hope. In the early years of the disease, the life expectancy after diagnosis was just 11 months. Now, thanks to new antiviral medications and protease inhibitors—often taken together in what's called the "triple cocktail"—AIDS patients can live for years, possibly even decades. What's more, medical researchers are busy developing and testing new vaccines to treat and potentially prevent the disease. Nevertheless, the rate of new AIDS cases in the United States among women has more than tripled: In 1986, only 7 percent of new cases were women; in 1999, that figure had risen to 23 percent, according to a recent report by the Kaiser Family Foundation. And since women are much more likely to become infected with the disease through sex than their male partners are, continued education, vigilance and awareness are essential for keeping this devastating disease at bay. "I have only known a life with AIDS" Autum Aquino answers the door of her house outside Bangor, Maine, cradling a miniature schnauzer in her arms. She's wearing a blue wraparound skirt and four-inch white platform sandals. Her curly hair is pulled back with a sparkling blue headband, and her fingers and toes are painted to match. In other words, Autum seems like any ordinary, fashion-conscious high school student. But she's far from ordinary. Now 16 years old, Autum has been living with AIDS her entire life. Her father was a former intravenous drug user who probably infected his pregnant girlfriend before the couple separated; he died when Autum was four. As a toddler, she was barely able to eat, and she constantly needed feeding tubes, and occasionally IVs, to keep her alive. Her mother, who was still healthy at that time, and her aunt cared for her, and gradually Autum became well enough to start school. In fact, Autum didn't even know she had the virus until she was in kindergarten, when she overheard her mother on the telephone talking about the illness. When Autum asked what AIDS meant, her mother, Theresa Wade, a former health educator, knew she couldn't keep the truth from her daughter any longer. "You and I have a disease that has to do with our blood," she told Autum. "Will we die from it?" the little girl asked. "Yes," her mother replied, "but everyone dies. Maybe we will just die a little bit sooner." Theresa was determined, however, that she and Autum would not tell anyone else about their condition. She knew that people were paranoid about AIDS, and she had heard stories about HIV positive children being barred from school and shunned by their classmates. But at show-and-tell a few weeks later, a diabetic classmate gave a presentation about his illness, and that afternoon, Autum pleaded with her mother. "He can tell people he has diabetes," she said. "Why can't I tell people I have AIDS?" That innocent question provoked a profound change of heart in Theresa. The next summer, as Autum entered first grade, Theresa decided to go public. At her request, the school held a public meeting, which was covered by local TV stations. The community rallied around them, and the family quickly became local celebrities. "I was always in the news, always in the media," remembers Autum. She relished the publicity. "I thought, I'm the celebrity girl. Everybody loves me. I'm so cute. The reason for all the attention was pushed to the back of my mind." But Autum's health wavered, and after she'd spent just a year at school in Maine, doctors suggested that warm weather would be easier on her immune system. The family moved to the conservative community of Lakeland, Florida. But this time, when they alerted Autum's new school about her illness and held a public meeting, the gathering turned ugly as frightened parents took to the microphone. "We've got to do something," declared one mother. "How can we let them infiltrate the school system where they can date your son and my daughter?" Theresa pleaded for tolerance, to no avail. "We cannot treat them as normal people because they are not," the same mother told the TV cameras. "They are marked, and they are going to stay marked until they die." The family received several death threats, and the local Ku Klux Klan burned a cross on a neighbor's lawn, apparently thinking it was theirs. "The experience was scary enough for the adults to deal with," says Autum's aunt, Lynn Woods. "And we thought they might kill Autum." A few days after the explosive meeting at Autum's school, Theresa looked out the window of the garage door and panicked as she saw a procession marching up the street toward her house. Fearing the worst, Lynn met the protesters in front of the garage while insisting that Autum and her mother remain inside. But instead of coming to harass the family, these marchers were protesting for them. Some of the people in the crowd were even in tears. They had come to disavow the fear and hatred they had seen their neighbors display at the meeting. "We live in your neighborhood, and we want you to go to our school," a young woman told Autum. Another woman hugged the little girl and said, "You make such a difference for every other child that has to go through this. Welcome." Sickness and Health Within the year, Theresa's health had worsened—she was losing weight and getting fatigued easily—so the family decided to move back home to Maine to be closer to their relatives. Upon their arrival, they received a hero's welcome: Nearly 100 people (friends, relatives and the media) met them at the airport with flowers and a giant teddy bear for Autum. But Theresa's health soon deteriorated even more. Seven-year-old Autum didn't understand what was going on or why her mother was in and out of the hospital. "I remember going to visit her," Autum says. "It never crossed my mind that she wasn't going to come out." A few weeks after her mother was admitted for the last time, Autum was woken before daylight and brought to the hospital. That's when she learned the news. "Do you know where your daddy is?" someone asked her. "Yes, he's in heaven," Autum replied. "Well, your mommy's there too." Although she was surrounded by her family's grief, Autum barely cried. "I don't think it clicked in my mind," she says. "I didn't really comprehend that she wasn't coming back. I don't think I had a grasp of how my life would change." Soon after, Autum's health also declined. The next three years were a whirlwind of pneumonia, chicken pox, shingles, migraines and vomiting. She was constantly in and out of the hospital and had to gulp down 14 different medicines twice a day. There were antivirals for the HIV, antibiotics to prevent infection, drugs to keep her heart beating and her kidneys working, drugs to control her asthma and stimulate her appetite. And through it all, she still managed to attend school. "From the time she woke up at 6 a.m. until midnight, we were giving her meds," recalls her aunt Lynn, who has been caring for Autum since Theresa's death. "I was so scared that I was going to lose her." When Autum was in sixth grade, she was put on the newest treatment regimen: the protease inhibitor Viracept, which prevents infected cells from producing more HIV, along with the antiviral drugs Zerit and Epivir, which help prevent healthy cells from becoming infected with the virus. The drugs are usually taken in combination—one protease inhibitor and two antiviral medications—to make them more effective. As with many AIDS patients who were able to hold on until the development of protease inhibitors, Autum rebounded. She soon stopped needing the liquid nutritional supplements and medicines that she had been receiving through a gastrointestinal feeding tube nightly since she was four years old (because she had been unable to tolerate food well enough to get adequate nutrition). Last year, doctors finally removed the feeding tube altogether. It wasn't just the drugs that helped Autum spring back to health, says Scott Clough, M.D., a pediatrician in private practice and Autum's physician. "She has a great support system," he says. "Everyone knows she's HIV positive and treats her like a normal person. Mentally, it allows her to thrive." Now Autum takes her "cocktail" in the morning and evening—she takes only the Viracept in the afternoon—and receives a monthly intravenous treatment of synthetic gamma globulin to help prevent infections. After everything she's been through, Autum thinks it's important for her to talk about her experiences to teens and young adults, and she recently gave a presentation to her own classmates for the first time. "I was really nervous, but everyone was great about it," she recalls. Autum realizes how profoundly AIDS has affected her. It's been eight years since her mother's death, and she claims not to grieve for her anymore. "I realize that nothing I do will change the fact that she's gone," she says, although the stoic teenager remembers her mother on holidays by placing roses next to her mom's urn, which rests on a hutch in the living room. Once the object of scorn herself, Autum has learned not to reject others, and her friends tend to be goths, individualists and other school outsiders. "I've always said that if I didn't have AIDS, I might have been a spoiled little brat," she explains. "I wouldn't be as optimistic and accepting of other people." And the future? There's a strong probability that her drug regimen will eventually stop working. "There's always a worry that the virus will change or mutate and become resistant to the medication," Dr. Clough says. "Hopefully, when that happens, there will be some new medications and the virus will be responsive." Dr. Clough can't predict how long Autum will survive, but he's optimistic. "She has lived so long that her prognosis looks good," he says. "I'd like to believe that with continued technological development, she could live for many years." Autum, who feels fine and hasn't been hospitalized in about four years, is proceeding as if she has decades of health in front of her. She's not letting her illness dictate her fate, and she refuses to let herself get depressed about it. "I hate it when people try to give me sympathy," she says. "It's not going to change anything—it's just a waste of time." Autum's not sure she's the marrying sort or if she wants to have children, but she knows she wants to work with children, probably as a pediatric nurse. "When I was in the hospital, they made me the most comfortable," she says. "I wanted to be just like them." Whatever she does, she doesn't plan to let AIDS get in the way. "I don't think it will limit my choices," she says. "I was taught that I could do whatever I wanted, and I live by that." "AIDS was a disease that didn't happen to people like us" In 1984, Nicole McCabe was just another three-year-old on a family vacation when a stranger's plea changed her life forever. Her family was eating pizza at Busch Gardens, in Williamsburg, Virginia, when a woman rushed up and pointed to Nicole's two-month-old half brother, Dwight, who was crying inconsolably, as he often did. The woman had noticed the boy's blue lips and flaring nose, and she knew this was more than just a cranky infant. "I'm a paramedic," she said to Nicole's mother. "Your son is in respiratory distress. You need to rush him to the emergency room or he'll die." At the hospital, Dwight was diagnosed with congestive heart failure and pneumonia, and doctors warned the family that he might not survive the night. Somehow he did, and he spent the next three months undergoing a battery of tests to determine what was wrong with him. Nicole's 23-year-old mother, Lauren Burk, a psychiatric nurse, had a suspicion about what was going on. Her husband, Patrick, a mental-health aide, was a hemophiliac, and for several years, Lauren had been reading medical reports about blood supplies that had been contaminated with HIV. Both Lauren and Patrick had been experiencing swollen glands, a common symptom of AIDS. But a doctor incorrectly assured Lauren that as long as she and Patrick hadn't had anal sex, she couldn't be infected and therefore couldn't have passed on the disease to Dwight while she was pregnant or during his birth. Lauren believed the assurances that Dwight couldn't have AIDS. "It was kind of frustrating on one hand, because no one knew why he wasn't getting better," she says. "On the other hand, it was a relief that they were saying it wasn't AIDS because from everything I knew, no one could survive that disease." But the tests eventually proved that Dwight did have AIDS, and then Lauren and Patrick tested positive for HIV. Nicole, Lauren's daughter from a previous marriage, was the only member of her family who didn't have HIV, and Lauren and Patrick feared that the three-year-old could become an orphan before she finished elementary school. Breaking the Silence "The doctors told us that we might want to tell our friends and family that Dwight had cancer. They didn't know how the town would react," says Nicole, now a poised 20-year-old college junior with fine blond hair and pale green eyes that mirror her mother's. "AIDS was seen as a gay disease that didn't happen to people like us." After the diagnoses, Lauren and Patrick sat down and discussed their options. Going public with their tragedy could throw them into the media spotlight, which would take time away from Dwight's care. "But we didn't believe that lying was the right thing to do," says Lauren, who now, at age 40, has beaten the odds and lived with the virus for 17 years. "We thought we needed to show that it could happen to anybody." The federal government was responding slowly to the epidemic, and the Burks thought that perhaps the story of their all-American family could spur additional spending for research and education. "We didn't want to die in vain. We wanted our deaths to mean something," recalls Lauren. When the family began to tell people about their plight, their community near Altoona, Pennsylvania, rushed to help. They held fund-raising dances, delivered cooked meals and baby-sat for Nicole while her parents took Dwight to the doctor for numerous treatments, including spinal taps and open-lung biopsies. At the same time, the media descended on the small town. Reporters from 60 Minutes, Time and People started calling the Burk house, hoping to profile a mainstream family seemingly condemned to die from a disease that was, at that point, still closely linked only to homosexuals. For Nicole, the attention was disorienting and scary. "I remember thinking, I'm going to lose my whole family," she recalls. "I didn't understand anything more than that." While she watched reporters troop in and out of her house, Nicole also noticed her little brother's health deteriorating. At Christmastime in 1985, he was just 20 months old when he died of toxoplasmosis of the brain, a common complication of AIDS. Patrick's health also declined. "Dwight's death took a lot out of Dad because he blamed himself," Nicole recalls. Patrick's weight dropped from 185 to 85 pounds, and his wife and daughter had to feed him. Six-year-old Nicole, already developing a stoic shell, tried to act like an adult when her 29-year-old stepfather developed tuberculosis of the bone marrow and died in 1987. She suppressed her grief, staying strong for her mother. "It's difficult for me to show my feelings in front of my mother because I feel like her stronghold," she says. But inside she was terrified. "It's so hard to see your brother and father die," Nicole says. "I wondered, Am I going to have my mom tomorrow? Will I have her tonight?" A Fighting Team For the next seven uncertain years, Lauren tried to make Nicole's life as normal as possible, signing her up for dance classes, theater productions and beauty pageants, and frequently inviting her friends to their home. Parents never kept their kids away, and Nicole's friends accepted Lauren's illness. "My mom was their mom, the type of mom everyone turned to," Nicole says. But in 1994, Lauren, who was no longer working and lived solely on her disability income, came down with an often fatal strain of pneumonia and was so close to death that she even received last rites from a priest. Nicole, who was 13 years old, worried constantly and often woke up in the morning wondering if her mother would survive the day. "With AIDS, any little illness could have taken her away from me," Nicole says, still shaken by the memory. Given that possibility, Lauren tried to prepare Nicole. "One day, I sat her down and said, 'You know what happened to Daddy and Dwight? That might happen to me,'" remembers Lauren. "I asked Nicole what kind of funeral she would want me to have, who she would want to say the Mass and who she would like to go live with." They decided together that if Lauren died, Nicole would live with her biological father and stepmother. Her biological father, a railroad foreman who lived nearby, became more involved in Nicole's life after her stepfather died, spending time with Nicole, especially when her mom was sick. Lauren did survive, but it took nine months for her to recover. Her sister came from Florida to help out, and friends, neighbors and church members offered support and assistance. But whenever possible, Lauren would try to take care of her daughter herself, using a cane to hobble into the kitchen to prepare breakfast and dinner. She would sit on the couch all day, saving her strength for Nicole's return from school. Nicole would bathe her mother and do the housework, then sit at Lauren's bedside reading Romeo and Juliet and The Scarlet Letter aloud. "I blocked out a lot of the suffering and death," Nicole says. "Instead, I tried to focus on the good times we had together as a family in order to get through it." Her father and stepmother offered their help whenever they could, taking care of Nicole and providing emotional support. "He could have been a real jerk and taken Nicole away from me," says Lauren, "and he definitely would have won custody." In the midst of this concern for her own health, Lauren admits that she worried about her daughter's emotional well-being. She asked her priest to counsel Nicole, saying, "Father, I'm really sick. I'm afraid of how this is affecting Nicole." To everyone's surprise, Lauren was still alive in late 1995 when the next generation of AIDS treatments—the "triple cocktail"—was released. Nicole's mother has regained much of her health over the past six years; her blood test results are now similar to those of an HIV negative person. (This is a common response to the cocktail, but doctors suspect that the virus is still present, hiding out in such places as the brain, lymph nodes and retina, and it would return if drug treatment stopped.) The side effects of the medications can be debilitating, however. Lauren now suffers from fat-redistribution syndrome, which has caused her body fat to migrate from her extremities to her midsection, causing a "buffalo hump" between her shoulder blades that makes it difficult to support her body weight. The fat could be removed by liposuction, but Lauren's HMO won't cover the procedure. If there can be any positive effect from Lauren's disease, it's that AIDS has helped forge an extremely tight bond between mother and daughter. "She gives me so much strength, so much hope," Nicole says. "Everyone can look at what she's been through and how she's raised me to be a normal 20-year-old. I just hope that one day I can be as good a mom to my children as she's been to me." They are so close—and Nicole is so worried about her mother's health—that Nicole decided to attend school only 10 miles away from home at Saint Francis University in Loretto, Pennsylvania, where she is studying to become a social worker. She lives in the dorm and participates in sorority activities, but she rarely stays out of touch with her mother for more than a few hours. "It hurts me because she's missed out so much on life," Lauren says. "As a mother, you look at that and you think maybe it would have been better if I'd died a long time ago." Hearing her, Nicole grows quiet and tender. "Don't ever say anything like that," she says to Lauren, almost in a whisper. "I know," Lauren replies, "but I feel that sometimes." "I would never want to give you up," Nicole says. The two women consider themselves not just a family but a team, so Nicole doesn't really think in terms of who's healthy and who's sick. "There are people who are infected with AIDS and those who are affected by AIDS," she says. Together, Nicole and her mother travel to local schools and churches and talk to students about Lauren's illness, how she contracted the disease and how, just as Lauren looks normal and healthy, you can't tell a sexual partner's HIV status by his or her appearance. When they started, Nicole, then only seven, simply accompanied her mother for support. But youngsters began asking her what it was like to have a mom with AIDS, and gradually Nicole stepped up her participation, using her own experiences to help audiences understand that someone can grow up in a family of people with AIDS and not get infected. As someone who has lost half her family—and could also lose her mother—Nicole wants to do whatever she can to keep the issue in the public eye. "People are still getting infected in massive numbers, and scientifically they're still far from a cure," she says. Fourteen years after her stepfather's death, it's still not easy for Nicole to share her story in front of a crowd. "Each time is hard for us because we go through the pain and agony again," she says. "But if we can help one person, we've done our part." It seems like she and her mother have helped a lot of people. After a talk at a Pittsburgh-area campus, a state department health official called Lauren to tell her that there was a flurry of people coming in for HIV testing. "I'd often wondered if our message was sinking in," recalls Lauren, "so when I heard that, it made me feel awesome." "What we're going through is saving people's lives," Nicole told her mother at the time. "So maybe Dwight and Dad didn't die without reason." Return to home page Articles | Bio | Contact | Links | Home Page Copyright © 2012 Barry Yeoman