Infected and rejected: the children of HIV

Despite her young age, María is a veteran at fighting the invisible enemy inside her body. She has been living with the HIV virus ever since she was born, when she contracted it from her infected mother through perinatal (mother-to-baby) transmission. Her personal battle began at age three. "The first pill they gave me was really huge, I remember because I threw it up all over the nurse," she recalls. Ever since then, María has not stopped taking pills of every size and description every day of her life. She is about to begin a new treatment because the drugs she was taking until now damaged her liver and bones. María complains that the medicine gives her more trouble than the disease itself. She knows she will have to put her studies on hold for a year because the treatment will be strong, and no matter how she tries, her memory will not respond.

The eldest of the HIV generation are over 25; the youngest are in their teens

"All of us who have the virus have to ask the same question: 'do I say it, or not'?"

These children born with HIV are now having perfectly healthy babies of their own

"I study, but when I'm sitting in front of the exam my mind goes blank," she says. María is at the mercy of HIV, but she considers herself lucky. "Nobody wants to be ill, but I have accepted my condition and I live my life. Besides, I was born at a time when I could be treated with antiretroviral drugs. And medicine is making quick progress. They might find a vaccine soon, and then we won't have to take any more medication."

María has no scores to settle with life. She does not even torment herself wondering why her sister, 14 years her elder, was born healthy. "The explanation is easy: when she was born, my mother was not infected." She was raised by "two mothers," as she says. "My grandmother handed out the gifts; my sister handed out the punishment." Her biological mother died when she was a little over two, but hearing her talk, nobody would doubt that she grew up in a safe, affectionate environment.

Although María looks like any other kid her age, she has the maturity of someone who grew up fighting a disease, making constant trips to the hospital, examining analyses and taking pills. She is part of the first generation of children born with HIV in Spain who got it through mother-to-baby transmission. There are just a few hundred of them at the most, although nobody will advance a figure because official records only consider AIDS patients. The eldest of the HIV generation are over 25 years old, while the youngest are in their teens.

"In the period prior to antiretroviral drugs, a third of children died or developed AIDS by age six," says José Tomás Ramos, head of the pediatrics department at Getafe University Hospital in Madrid and one of Spain's leading experts on child HIV. Back then, available medicines were made for adults, because labs had focused their research on the most numerous victims at the time, the gay community.

"In the end we realized that children needed proportionately larger doses than adults," says Ramos, who has been treating children with mother-to-child HIV since 1984. "Until 2007, the European Drug Agency did not establish the need for pediatric research on drugs."

Ramos admits that things have changed radically since then. "It's infinitely better now. New treatments have turned the infection into a chronic disease," he says.

These days, there are practically no children born with HIV in Spain. New drugs and greater medical control of pregnancies has reduced the percentage to a tiny amount. That is the reason why the first generation of HIV-infected babies went down in clinical history as an isolated group; an oddity. Since birth, these individuals have had to live with the social stigma of being HIV-positive.

"At the hospital we have children with diabetes and heart conditions, and they are pampered by society. But this infection causes a lot of rejection," says María José Mellado, a pediatrician who specializes in infectious diseases at Carlos III Hospital in Madrid, and the president of the Spanish Infectology Society.

This stigma explains the silence surrounding these patients, their refusal to use their full names for this story, and even the hostility displayed by some doctors in reply to this reporter's questions.

"In Guipúzcoa province they received regular schooling and they're like any other youth with a chronic disease. They enjoy complete social normalcy," says Dr Juncal Echeverría, a neonatologist at Donostía Hospital in San Sebastián who treated HIV-positive children between 1984 and 2004, after which no more babies were born with the virus. But that normalcy is the result of silence: fear of rejection forced the families and tutors of these children to keep the disease a secret. "There are children who had to change homes, neighborhoods and even cities when people found out what they had," says Dr Mellado. "The message for society is that HIV is only transmitted through bodily fluids: blood, semen, vaginal fluids, breast milk."

Anaís, 26, has good reason not to disclose her real name. She tried to be honest w

n she was hired for her first job as a nurse's aide. "As soon as they found out, they said no," she remembers, her hand shaking as she holds a cup of decaffeinated coffee in her hand. "I was very naïve, and I suffered a lot from that rejection. It was my first job and I was happy. I haven't said anything at my new job."

César will not provide his real name, either. He is 21 and got HIV from his mother, who in turn got it from his father, a drug addict. César was raised by his grandparents. "They would give me the medication. One day, when I was 11 or 12, they told me what I had. Well, at least they told me my defenses were weak and that I had to take some pills," he recalls. Slowly, he began to understand the truth. "My closest friends know about it, and I've said it at work, too." The hardest part is when he meets a girl he likes. "I had a girlfriend for three years, and I told her, and there was no problem. We broke up over other issues." The main thing, he says, is to know whether a person is going to reject you or not. "You know who you can tell and who you can't."

Carla, 25, who contracted HIV through breast milk, does not conceal her condition but she does not go around talking about it, either. "We all have a right to our privacy, and we don't have to be level with everyone." Carla uses her real name and was even on a television program about HIV-positive people. She lives with her grandmother and younger sister. Her older sister moved away some time ago. Neither one of her siblings has the virus. "When the eldest was born, my mother was not infected. And the little one was born prematurely and did not breastfeed."

Her condition was detected at age three, and the diagnosis was not good. "My grandmother was told I would not live beyond the age of seven," she remembers. At first, Carla was treated with the only available drug, AZT, a medication meant for adults. There would be many others. Carla grew up without any special traumas. "I think my sisters felt more discriminated than me," she says. These days, Carla is an activist who attends seminars and gatherings of all types to disseminate the truth about a chronic disease that causes so much suspicion.

"People associate HIV with AIDS and drugs, and they look at you funny," says Anaís. That is why she would rather keep quiet about her condition and only tell people who will understand her. "I went out with a guy and didn't tell him. Why should I, if I didn't even know whether the relationship would pan out or not?" Later she met her current partner, with whom she's been living for six years and who came with her to the interview. "It took me a year to tell him, but during that time we did not have full sexual intercourse." He was good about it "even though I'm a hypochondriac," he admits. He was tested for HIV and it came out negative.

"All of us who have the virus ask ourselves the same question: do I say it or not? For me it's very easy: I say it. People can love me the way I am; the others know the way out," says María. It is true that she has had bad moments, moments of panic even, thinking that a confession to her friends would lead to complete exclusion. And she has had bitter experiences, like when she told her best friend, who proceeded to quickly tell everybody else.

"But then everybody left her out, not me," she says. María thinks the problem is lack of information. Little is explained about HIV in schools, and nobody bothers to really find out what the infection is all about, and how small the risk is in a casual relationship. "If people only knew how many HIV-positive people they cross in the metro or at a restaurant!" María also blames infected people for a lack of courage. "We say there is a lot of rejection, but we are the ones who reject ourselves because with the kind of knowledge we have, we shouldn't think that society is going to turn its back on us." María admits she has not experienced a lot of rejection in her life. "And since I've had many more good moments than bad ones, I'd rather forget about the bad ones."

Teresa would also rather forget the bad moments she has had ever since she found out, 17 years ago, that she was HIV-positive. The man she had been living with for five years passed the virus on to her, and she in turn passed it along to their baby. Teresa is a fighter and she does not like to hide, but her son had a hard time at school.

"They really screwed him over. They would sit him down in a corner of the cafeteria, far from the other children," she says. Things got so bad that Teresa had him transferred. The trouble started all over at high school, since there were many kids there from his grade school. But an energetic headmistress put an end to the trouble, and Jorge is now about to start college. He is one of just a third of HIV-positive people who only takes one pill a day. The 18-year-old had access to antiretroviral drugs from the start. "The first treatments were horrible, and all sorts of things happened to you," Teresa recalls. "I took up to 40 pills a day, and he took at least 30. Now it's better. Jorge prepares the pills for both of us along with our glasses of milk."

It has been a harder road for the children born infected in the 1980s, when available medication was minimal and pediatricians were helpless. "I was told that my son would inevitably die by age eight," says Irene, 46. "I didn't want him to live in Disneyland or anything like that, I wanted him to go to school and lead a normal life." Her son is now 23 and she tells him: "Now I believe that you will outlive me." Irene is in fact Jorge's aunt: she watched her sister, a drug addict, die, and adopted her baby, who became her own son's younger brother. Irene still gets angry when she remembers how a doctor criticized her for allowing both children to live together like that. She knew there were no risks. "We each had a different color for our most intimate things, like toothbrushes, scissors and so on." Irene devoted all her energy to learning about HIV and asking questions from the doctors who treated Jorge. "I would go to see them with questions written on a piece of paper, and refused to leave until they had answered every last one of them." During this long journey, Irene has had to take care of everything, from telling Jorge about his condition, to the thorny issue of convincing him about the absolute necessity of using condoms during sex.

María found support in the non-profit group Apoyo Positivo, where she has been turning for help ever since she was small. Through the camps and seminars they organize, she has met other young people like herself with very similar problems.

"For these youngsters, it's very important to realize that there are other teens like them, that they are not weird, that they are not alone," says the pediatrician Núria Curell, secretary of the Barcelona-based Lucía Foundation, which was created 15 years ago with the same goals as Apoyo Positivo but with a particular focus on children, teens and young adults. Curell believes there is reason for optimism because of medical advances in the field.

Dr Mellado, of Carlos III hospital in Madrid, speaks enthusiastically about the "seven grandchildren" born in the HIV patient center. She is talking about the children of kids who were born with HIV, but whose babies are perfectly healthy. Flumen Prieto, a psychologist at Apoyo Positivo, is even more optimistic when he considers the circumstances in which these kids were raised. "They did not suffer from the AIDS stigma, which was terrible at first. Although some watched their parents or siblings die, they were very small when it happened. And they did not undergo a life-changing experience when they found out what they had, because they were born with it and were used to taking medication and going to the hospital every three months."

All this does not mean that there are no question marks regarding the future of these youngsters, who have experienced a unique moment in the history of the HIV epidemic and who are being studied by researchers all over the world. "For the most part they are children of HIV-positive mothers with a history of drug use during pregnancy. And for years they've been undergoing treatments with a potential toxicity whose long-term consequences are unknown," explains José Tomás Ramos of Getafe hospital, who is the lead researcher in a project that follows the evolution of HIV-positive kids in the Madrid region. "The medication they take can change the metabolism of lipids, resulting in higher cholesterol and greater risk of cardiovascular disease. They also have a higher frequency of certain neuropsychiatric problems than the general population, and higher school dropout rates."

Still, the greatest risk they face is getting tired of the medication and its secondary effects. Many of these youngsters have spent the last 15, 20 or 24 years taking syrups and pills that cause diarrhea, vomiting and body deformation. Anaís, who will soon be 27, was very young when she developed complications following a case of chickenpox. That is when doctors found out that she, like her mother, was HIV-positive. Anaís remembers the AZT treatment and the string of small problems she suffered during her childhood. But the worst came during adolescence, when she was treated with intravenous injections that she felt incapable of enduring.

"Teenagers are the most fragile group," says Teresa Español, president of the Lucía Foundation. "They've been in treatment for years, and are more fragile psychologically and socially. They have the feeling that they've always been sick, and when they reach an age when they are aware of what they have, they start fearing for their lives." During this period of insecurity, some youngsters decided to drop their medication. This decision can have very serious consequences, because HIV treatment requires following a strict schedule of medication at specific times of the day. César knows it well. He admits with a half-smile that the pill thing is "a pain in the ass." "You're going out with friends and have to take your medication with you. But it's a matter of life and death." And he knows that he wants to live.