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NC Now: AIDS in Children
Imagine being born with a disease you know one day will kill you. That's the reality for thousands of children in the U.S. who live with HIV, the virus that causes AIDS. In North Carolina, the Department of Health and Human Services says last year, nine children contracted HIV at birth from their mothers. Many of those children will live to be teenagers, like Gerrod Henderson, who contracted HIV from his mother.
Gerrod Henderson/15 years old: My hobbies are basically just playing the piano, watching TV like a normal teenager.
In almost every way, Gerrod Henderson is a normal teenager. Except one.
Gerrod Henderson: Basically I was born with HIV. I found out when I was five or six, one of those, and it was through eavesdropping which little kids like to do.
Gerrod's mother now lives in a nursing home in Maryland. We met him in Durham, where he lived with extended family. When Gerrod was born in the late 1980s, there was nothing doctors could do to prevent HIV transmission from mother to child.
Dr. Susan Fiscus/UNC-Chapel Hill: If a mother was HIV positive, there was a one in four chance that her baby would be infected.
Dr. Susan Fiscus runs the state lab at UNC-Chapel Hill that tests babies born to HIV positive mothers for the disease. After promising research in the mid-1990s, doctors began treating pregnant women with AIDS drugs, and Dr. Fiscus watched the transmission rate plummet.
Dr. Fiscus: It went from 25% in 1993 down to about 10 to 15 percent for the next two years, then went down to about 5% for several years, then about 3% and last year 2.4%. We have about 3 to 5 kids every year who are infected, and the sad thing is that many of those transmissions could be prevented.
Doctors say the first step is HIV testing. North Carolina law requires pregnant women to have an HIV test unless they specifically choose not to. A state survey found in 2003, 83% of women were tested during pregnancy or delivery.
Dr. Coleen Cunningham/Pediatric Infectious Diseases, Duke University Medical Center: Women should be educated as to why that test is important, why it's not a reflection of anybody's perception of their behavior, their good behavior or their bad behavior, why it's just important for every woman who's pregnant to know what her HIV status is because there's something that could be done to protect her child if it was positive.
Dr. Coleen Cunningham is the chief of pediatric infectious diseases at Duke University Medical Center. Her department also treats pregnant women with HIV, often using antiretroviral drugs.
Dr. Cunningham: The monitoring, once you start a woman on treatment, the monitoring particularly during pregnancy is intensive because some of the medicines usually have more side effects in pregnancy.
Once they're born, babies take medicine for six weeks. If any of the virus was transmitted during birth, the medicine might prevent infection. Then Dr. Fiscus' lab tests the babies' blood for HIV. She says nowadays, most transmissions happen because mothers either didn't know they had HIV or received no prenatal care.
Dr. Fiscus: I had to call one of the pediatricians to tell them this baby was infected so they called back some time later after talking to the mother, and she said she would have been tested if only her obstetrician would have asked her or mentioned it to her. It's hard enough when everything has gone, everyone has done it according to plan and there's a transmission. That's bad. But it makes me kind of angry as well when I know that a lot of these could have been prevented. Not all of them. But a lot of them could have been prevented.
Babies who have HIV are treated through the North Carolina Children's AIDS Network, which includes Duke, UNC, East Carolina, Carolinas Medical Center, and Wake Forest. The doctors there are quick to point out, though, that they also treat a large number of children and teenagers just like Gerrod, who contracted HIV before doctors knew how to prevent mother to child transmission. They say those families face a special set of issues, including deciding who to tell.
Dr. Cunningham: What I frequently see is families are so terrified of the reaction they're going to get from the people around them, whether it's the church or the school or friends or neighbors, that they do keep it a big secret. The stress of keeping that secret is actually very hard on the kids and their families. It also sends a message to the child that there's something we're ashamed of and there's something that if people knew it about you they would be horrified.
Gerrod says he picks and chooses who to tell but is always glad to educate people about HIV.
Gerrod Henderson: It gives me an opportunity to talk to them, just about anything they have questions about. I feel I'm helping the world, helping mold people's minds into what it is. It's not all about you being sick, cause I ain't sick. I don't look sick.
To stay that way, Gerrod eats a balanced diet, exercises, and takes several medicines each day. Doctors say it can be difficult to get the right dosage for children because the drugs are made for adults and many kids just don't want to take them.
Dr. Cunningham: Many kids can't swallow pills, so they have to take the liquid version. And the liquid version of many of these medicines tastes like kerosene.
Gerrod says he had trouble taking his medicine when he was younger, but it's second nature now. He says the bigger problem is a lack of social support for HIV positive teenagers.
Gerrod Henderson: Sometimes you may be feeling just like ugh, I wish I didn't have this, and you know hearing the other person say I felt that way too, or I understand where you're coming from is so reassuring.
He hopes to start a club at school for students coping with diseases. He's also looking toward the future. Gerrod plans to go to college. He's thinking about being a lawyer, a social worker, or a pediatrician. And he's not thinking about HIV.
Gerrod Henderson: I don't think about it killing me because I'm very healthy, and I go through life with that.
Gerrod Henderson: I actually wrote a poem a little while ago for English class, and it says in the last part, 'I want to live to be 60 or greater you see, if it's in God's plan you see. Are you understanding me? Now this thing will be zero. Undetectable. Gone. C'est la vie. That's all you need to understand about me.'
Researchers at Duke surveyed school districts across North Carolina and found no cohesive policy on HIV. They say some districts go to great lengths to protect a child's confidentiality and educate teachers about HIV. But they say in one district, a child was not allowed to play a sport because of HIV, and in another the policy called for HIV positive children to be removed from the regular classroom. |
