Some children did not receive the best prenatal care or were diagnosed with HIV late and did not receive the intense care they needed. As children have grown older, experts have found that some of them suffer from attention-deficit disorder, depression and various learning disabilities.
In addition, some children are behind in their schooling because early in their lives, survival, not necessarily education, was their first priority.
"Early on, for parents and foster parents, it wasn't so much 'What do you want to be when you grow up?' because it was too scary [to think about] at that time," said Dr. Warren Ng, director of the Special Needs Clinic at Columbia Presbyterian Hospital in New York.
Some HIV-positive teenagers must also deal with the frustration of not being as scholastically advanced as their classmates — some have learning disorders, and some who live at home with their biological families may also have to help their HIV-positive parent struggle with their own illness, taking away time for other things. The burden can be too much for any teenager.
"These kids can be so angry. They hold a lot inside of them," said Luella Purse, a former volunteer coordinator at ICC who has helped mentor children born HIV-positive for seven years. "Often they take on the family responsibilities — the parents' responsibilities — because their parents are having trouble dealing with their own problems. So when someone confronts them [at school], they get angry and act out, cursing the teachers out and blaming everyone around them. And the thing is they know they're angry, and they don't know why."
Purse recalls one 14-year-old boy who could only read at a first-grade level and how he would be sent to his school principal's office for fighting. She also remembers how one 8-year-old boy could not tie his shoes or make change at a grocery store.
She is also a "big sister" to a 16-year-old girl she first met at ICC who lives with her mother, who is also HIV-positive and often hospitalized. Purse sighs as she worries about the girl, who must often take on the responsibilities of an adult and has been known to refuse to take her medication to the point where her doctors had to perform an intervention.
"She has a T-cell count of 10," said Purse. "It's like living with a time bomb. If she gets a cold, she could get pneumonia."
Teens who have untreated mental illness also tend to have more difficulty taking medication. Experts say refusal to take medication can represent the rebellion and growing pains adolescents undergo as they seek independence. It can also reflect their desire to feel normal, and depression over their illness, especially if they have watched their parents die while on medication.
"With some of our perinatally born clients, those who have grown up with the disease, a lot of the perception of the medicine came from the early part of time when patients used AZT [zidovudine] just before they died," said Dr. Donna Futterman, pediatrician and director of the Adolescent AIDS Program at Montefiore Medical Center in the Bronx. "If one of your parents die while on medication, you lose a lot of hope. 'My mother died, why am I going to live?'"
These teenagers can feel isolated, making the challenges even greater.