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.
However, 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.
X is a pioneer at ICC. She is the first resident to start dating, giving caregivers at ICC an issue they once never thought they would have to confront. Born HIV-positive and suffering from a form of palsy linked to the disease, X — and her fellow residents at ICC — were born into what was thought to be an early death sentence.
However, advances in HIV-drug treatment over the past 10 years have enabled these children to live longer. Caregivers who once prepared for funerals must confront new and unanticipated problems as children approach their teens and adulthood — such as dating, helping them cope with their disease while encouraging them to live as normal as life as possible, and emotional, psychiatric trauma, behavioral and learning disabilities associated with their condition.
From Planning Funerals to Planning Lives
According to the Centers for Disease Control and Prevention, in the early 1990s, approximately 1,000 to 2,000 infants were born with HIV each year. Between 1992 and 1998, perinatal HIV cases dropped 75 percent and the numbers have continued to decline.
"We were losing so many children," said Sr. Bridget Kiniry, one of the founders of The Incarnation Children's Center. "There was a period of time when we were having two or three funerals a month. 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.
"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.'"
Severe mental and behavioral problems are among the issues caregivers have 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 available at the time or were diagnosed with HIV late and did not receive the intense care they needed right away. 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.
Playing Catch Up
Besides being HIV-positive, some teenagers must deal with frustration over their own learning disorders or knowledge that they're not as intellectually advanced as their classmates. And some teenagers who live at home with their biological families may also have to help their HIV-positive parent struggle with their own illness. The burden can be too much for any teenager to bear.
"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 even tie his shoes and make change at a grocery store. Purse believes New York's public school systems are not addressing these children's deficiencies and is trying to establish a learning center geared towards their special needs.
"We're hoping to enable children to feel like they have a support center while they're developing their skills and [we're hoping] to give them self-confidence," Purse said. "Unfortunately, we're not talking about sending them to the best colleges. We're talking about getting these kids to learn how to read at the 8th grade level because with some of these kids, learning to read at the basic level represents such a tremendous hurdle."
"But reading is only one aspect of it. They need life skills," Purse continued. "They need to know how to go out into the world and interact with people. They need to be able to go to the grocery store and make change. Sure, we've saved their lives and that's great. But if we don't show them how to live, then what have we really done?"
Purse's proposed learning center would not replace school but would supplement it. Each child, Purse said, would have an individual educational plan for learning disability and a special educational teacher would be assigned to each child. Purse also wants the center to provide AIDS education, give children a place to discuss their illness, learn more about AIDS and above all, be a refuge for them and perhaps their family members as they try to live with the disease.
"What the learning center would enable them to do is play catch up, give them a support system for what they're dealing with at home," Purse said. "A lot of the time, when children live with their families or go home to their families, the families are totally dysfunctional. … It would give them a safe place to be."
The center would also provide counselors for teenagers who did not have learning disabilities that would prevent them from going to college, and they would help them find grant and scholarship opportunities. Purse's center is in its very beginning stage as she is looking for sponsorship and funding. She says New York's Jewish Board of Family and Children's Services has shown early interest in her project.
Battling Isolation, A Quest for Normalcy
Purse is also a "Big Sister" to a 16-year-old girl she first met at ICC and she wishes a center existed for her. Her "little sister" 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 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 their 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?'"
In some ways, these teens have been robbed of their childhood because they were born with a disease and have had to tackle circumstances that many adults could not handle.Some take several doses of powerful medication a day that doesn't make them feel well. They must grow up fast and learn to confront their own mortality — as well as their parents' fatal illnesses.
These teenagers can feel isolated and it is important for them to have a strong network of support — friends, relatives, mentors, support groups who can give them a sense of hope and show that they can lead productive lives.
"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."
The Bridge to Living With HIV
Support groups of peers — HIV-positive adolescents — like the ones provided by Montefiore's Adolescent Aids Program, as well as a strong support group of family, friends and care providers, are vital to teens with HIV, especially if they are hesitant to disclose their HIV status to others.
"I think with many of the kids who have grown up with the disease come from families who remember when there was a lot of overt discrimination and a stigma," said Futterman. "With many young people, so few are willing to share their status publicly. There is still a tremendous amount of fear about being isolated from their friends being cut off. In relationships, we've found that a lot of teens are afraid of disclosing their HIV to their partners. They fear they won't be loved, that their partner will break uo with them. In reality, these relationships can be very brief, and if they are monogamous, it's serial monogamy."
With support groups, teens can at least openly discuss issues that only others similar in age and cirmstances would understand. It enables them to cope with living with their illness.
"It's very, very important for them to have age appropriate peers with which to share common issues," said Waisman. "That can be a steppingstone to adjustment and living with HIV."
‘They’re More Than Their HIV’
In its most recent statistics, the Centers for Disease Control and Prevention says there are 8,207 children under the age of 13 diagnosed with HIV/AIDS who have mothers who were also HIV-positive or were at risk. However, CDC officials say they do not have an exact number on how many of these children have reached, or are approaching their teens because some cases are not reported. In addition, some children were not diagnosed with the disease right away.
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 childrens needs and that some are destined to end up in the juvenile justice system.
As these children grow into teenagers and teenagers become adults, one challenge careproviders will face is helping them get a sense of their future. Part of that involves helping teenagers 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 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."
Prepping For the First Date and Beyond
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.
"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."
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.
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.
However, 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, ringing 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 two years old and one of the newest arrivals at ICC. With her white furry coat, she was 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, a bouncing "Baby" began to smile. Her 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.