"Helping kids connect to their own sense of what they want, what's possible will be a challenge," Futterman said. "In relationships, [it will be] teaching them not to be afraid to have love as a very important part of their lives and what role sex will have in their lives and helping them make reasonable decisions when they're ready. Many want to have children because they see it as having someone who will love them. But they do do not see it in terms of what they will have to give up, that they will have to grow up."
Experts say teens must continue to learn about their illness and continue to take their medication. Safe and responsible sex must to stressed, and women must know about and have access to good prenatal care to protect their newborns. Without continued education, experts say a new generation of HIV-born teenagers could become potential health risks.
"As a country, we have a tendency think that something is no longer a problem if we've had success combating it and then we withdraw money away from programs," said David Harvey, executive director of AIDS Alliance For Children, Youth and Families in Washington, D.C. "We must not let our guard down."
There is also another challenge: dealing with HIV-positive teenagers who outgrow the foster care system.
"On a policy level, more needs to be done once they age out of the foster care system." said Waisman. "Many times, it's not that the kids lack drive, but they do not get enough support. Kids with families have a lot more potential."
A sense of normalcy for these teenagers may be just as vital. Their HIV status may prevent them from ever leading a completely "normal" life, but some say caregivers and counselors must help the children realize their own self-worth.
"They have to learn about themselves. They are not HIV," said Sr. Bridget Kiniry. "They are teenagers who have this [virus]. They're more than their HIV — they have to learn what that means."
And that's what officials at ICC are trying to do. Eighteen children, whose ages range from 20 months to 16 years-old, live at The Incarnation Children's Center, which has been New York City's only residence exclusively for children born HIV-positive since 1989. The children come to the Center when their parents are either too ill and cannot care for them, they are orphaned because both parents are deceased, or come from foster care.
The administrators, doctors, nurses and volunteers at ICC are these children's extended family, acting like their surrogate parents, their adopted big brothers and sisters — and sometimes their whipping posts.
"They go through your normal everyday teen issues, like everyone else," said Dr. Margaret Heagarty, a longtime physician at ICC. "Sometimes they're two years old, sometimes they act like they're 22. They're really your normal teenagers."
Recognizing that their older teenagers do have specific needs, ICC officials are allowing them to go on closely supervised dates with a strict curfew. Administrators say they are planning to deal with dating requests on a case-by-case basis and have age limits on dating. They are also allowing them to have friends visit them at the center on weekend — with permission and advance notice. And the children's parents are always consulted.