Crutches could not stop "Lady X" from swaying to the grooves of the late Aaliyah.
"Rock the boat, rock the boat. Stroke it for me, stroke it for me," the 14-year-old crooned as she cranked up the volume of New York radio station WKTU and bobbed her head and crutches almost hypnotically.
"X" can bring an entire room to a standstill. Some days her blue eyes fume and weep and seem way too hardened for a girl so young.
On this day, X's eyes glowed. It was only 10:30 on a Saturday morning, but she was already looking forward to the evening. Asking repeatedly, "How do I look?" she urged her nursing aides to help her apply her lipstick.
"My boyfriend is coming to visit me," she smiled, brushing her caramel brown hair to the side. "He's my baby, and I love him."
X continued to sing "Rock the Boat" — loudly and slightly off-key — but her fellow residents in The Incarnation Children's Center, a Manhattan-based residence exclusively for children born HIV-positive, didn't wince. They were used to her singing and primping.
A Pioneer in the Shadow of Death
X is a pioneer at ICC. Born HIV-positive and suffering from a form of palsy linked to the disease, X — and her fellow residents — were born into what was thought to be an early death sentence.
But advances in HIV-drug treatment over the past 10 years have enabled these children to live longer, bringing the first generation of "AIDS babies" to adolescence and the cusp of adulthood, and a world of unknown, unanticipated challenges.
"We were losing so many children," said Sister Bridget Kiniry, one of the founders of The Incarnation Center.
"There was a period of time when we were having two or three funerals a month," she said. "We really prepared for funerals. … Then when the protease inhibitors became available to the children, that changed everything radically. Children that you cared for on a daily basis, where you did not know whether they even had a future, now they had a future."
Caregivers who once spent their time trying to make the brief lives in their custody as pain-free as possible, now must confront the new problems.
"The average age jumped from about 2 to 6 years old," Kiniry continued. "[But] you had children now manifesting other conditions that either weren't known or weren't addressed or just manifested. There was a certain amount of scrambling to meet these problems. In this field of [HIV] pediatric care, we were always in uncharted waters. There were never any precedents to say, "This works. This doesn't work.'"
The people of ICC and others, including parents and foster parents, find themselves scrambling to make up for missed educations, to prepare people suffering from learning disabilites, and emotional and psychological trauma to lead independent, adult lives, and to cope with all manner of life's complexities that no one thought they would see.
A Minefield of Challenges
X is the first resident to get that far at ICC, and it's opened a minefield of issues for her custodians.
What do they tell her about sex? What do they tell her date about her illnesses? What kind of rules do they set, and how should they be enforced?
At the Incarnation Children's Center, which has been New York City's only residence exclusively for children born HIV-positive since 1989, they've decided to deal with some of the issues by becoming an extended family for their 18 children, who range in age from 20 months to 16 years.
The administrators, doctors, nurses and volunteers act like surrogate parents, adopted big brothers and sisters — and sometimes whipping posts for the children, who come to the center from foster care, when their parents grow too ill to care for them, or when they are orphaned.
ICC officials are allowing their kids, led by Lady X, 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. They are also allowing them to have friends visit the center on weekends — with permission and advance notice. And the children's parents, when they have them, are always consulted.
"This [dating] is something we've really struggled with," said Carolyn Castro, executive director of ICC. "We very much want to make this a homelike environment. We've never done anything like this before. We set up a time limit, age limit, all the types of things you'd find in a family situation."
And ICC administrators stress that their children do participate in school events like parties and junior proms, enjoying events that their classmates may take for granted.
"They go through your normal everyday teen issues, like everyone else," said Dr. Margaret Heagarty, a longtime physician at ICC. "Sometimes they're 2 years old, sometimes they act like they're 22. They're really your normal teenagers."
Uncertain Lives, Uncertain Answers
Soon, they will be going through adult issues, too, and no one is really sure what that will mean.
In an article for February's American Journal of Public Health, Dr. Stephen Nicholas, director of pediatrics at Harlem Hospital Center and a co-founder of ICC, called the especially troubled population of children born HIV-positive growing into teenagers a "new crop of 'boarder babies,'" some of whom are being rejected by adoptive parents who were surprised at how long they have lived and were not prepared to deal with their various problems. Nicholas warned that there were no ideal settings to address all these children's needs and that some are destined to end up in the juvenile justice system.
And no one really even knows how many children are about to come of age.
The Centers for Disease Control and Prevention estimates that in the early 1990s, about 1,000 to 2,000 infants were born with HIV each year, and that between 1992 and 1998, perinatal HIV cases (HIV cases manifesting in the months before or immediately after birth) dropped 75 percent. But they are not sure how many of those children lived.
In its most recent statistics, the CDC says they know of 8,207 children under the age of 13 diagnosed with HIV/AIDS who have mothers who were also HIV-positive or were at risk. But CDC officials say they do not have an exact number on how many children have reached or are approaching their teens. Some cases simply are not reported to the government. And some children were not diagnosed with the disease right away.
Caregivers are all too familiar with the severe mental and behavioral problems encountered with some children. The mothers of many of these children abused drugs while they were pregnant, and experts are not sure how much parental drug abuse affected child development.
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."
Battling Isolation: A Quest for Normalcy
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.
"With some of the youths that we've had, we've found that those who have been bounced around in foster care have really had a hard time keeping up with the medicine simply because they have not had the role models, someone who could help them integrate and show them that the illness is not necessarily bad," said Chris Waisman, a social worker at the Adolescent AIDS Program. "They will frequently feel that since the illness is bad, then I am bad. A typical way to deal with these bad feelings is to deny them."
As these children grow into teenagers and teenagers become adults, another challenge providers face is helping them get a sense of their future. Part of that involves helping teens find out what they want out of their relationships, what they want out of their lives and what goals are realistic.
"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 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 teens born with HIV could become potential health risks.
"As a country, we have a tendency [to] 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."
Outgrowing the System
What happens when HIV-positive teenagers outgrow the foster care system remains another open question.
"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 Sister Bridget Kiniry. "They are teenagers who have this [virus]. They're more than their HIV — they have to learn what that means."
When Hardened Eyes Collide
As "Lady X" grows up, so does The Incarnation Children's Center. She is preparing to attend high school in the fall and says she wants to be the first lawyer in her family.
Now, a social life is still high on X's priority list. A week before her first date, X went on a trip with the younger children to Ringling Bros. and Barnum & Bailey Circus. She was already planning for her big night.
"I can't wait until Friday," she said to a group of volunteers and nurses, balling her fists with glee. "I told them I can't be hanging around all the time with these little kids."
Once inside, X's smile melted when Madison Square Garden attendees wanted to seat her in a special handicapped section.
"Tell them I can climb up the steps and sit with everyone else," she said. "I climb steps all the time when I'm in school."
So X pulled herself out of her wheelchair, and with one hand on a handrail and another on a nurse's aide's shoulder, she climbed up the steps and found her seat. Despite the noise at the circus, X borrowed a cell phone and managed to hold a conversation with her "peeps." No matter where she was, she had to stay in the loop with her friends.
X finished using the phone by the time the performances ended. While waiting for a chartered bus to arrive for the trip home, X sat in her wheelchair with her chin in her palm. She said she had an appointment to get her nails done.
Then she saw "Baby" waddling next to her. Baby was not yet 2 years old and is one of the newest arrivals at ICC. With her white furry coat, she was a living baby doll.
But like X, Baby also had hardened eyes. She smiled sometimes but it was rare. She was a tough audience for the Ringling Bros. clowns.
"Come on … come here to me," X said as she held her arms out. Baby slowly reached out to X and let her take her up into her arms.
Lady X bounced Baby to Robert Palmer's "Simply Irrestible" blaring in the background. Soon, Baby began to smile, bouncing in the arms of a young pioneer, who is leading the way for her and a lot of other children once thought to have been born to die.
Baby's eyes didn't seem so hard anymore.
ABCNEWS.com's Bryan Robinson has been a volunteer at The Incarnation Children's Center since March 2001.