HIV infects three lives but not their happiness

by Joe Tarr

In a trailer home north of Knoxville, a 3-1/2-year-old boy is lining up matchbox cars on a coffee table. Behind him, the Cartoon Channel flashes on a TV screen, but the sound has been muted.

At the front of the procession, the boy pushes a miniature Dunkin' Donuts semi with pictures of steaming hot coffee and fried cakes on the sides. Dressed

in yellow-and-blue-striped pajamas, he studies his toys. His head is covered with short kinky blond hair. On his feet are tiny white socks. Next in line, he moves a Milk Duds delivery truck. Then the boy, Kevin, arranges several cars, bumper to bumper.

Suddenly, he jerks his head up, waving excitedly to his father in a recliner a few feet away. "Daddy, Daddy, Daddy," Kevin chirps. "I see," reassures his father, John. Kevin beams as he stares down at the convoy.

The child's mother, Sandra, is slumped on a couch in front of him, exhausted after a long day of clerical work.

Kevin looks up and points his tongue at his parents, giving a long, "plthththth," and starts to giggle. His parents lightly admonish him, but it's clear they adore the playfulness. "Come here and give me a big hug," his father says.

All three of them are infected with the HIV virus. (They have been given pseudonyms to protect their identities.) Because of the disease, their son cannot walk or eat and speaks only a handful of words.

But the virus hasn't robbed their happiness.

"People say that all the time. 'How do you live knowing your son could die tomorrow?' Well how do you live knowing your son could walk out the door and get hit by a car?" John says.

"You just don't take anything for granted," his wife adds. "Nobody's guaranteed a tomorrow."

Children are among the smallest group of people infected by the HIV virus. In the Knox County region, about 10 children are infected with the virus, according to the Tennessee Department of Health.

But as the number of people with AIDS increases, more children are becoming infected.

Parents are threatened with watching their children die from a disease they unknowingly gave them. The children, both those infected and those not, may end up orphans when AIDS claims their parents.

But faced with such a bleak scenario, many families find the strength and hope to carry on with life.

John and Sandra believed their son was a healthy baby when he was born in May 1994. The couple did not know they were both HIV positive. Their son weighed more than 7 pounds and ate well.

When Kevin was about 3 months old and the family was about to embark on a vacation to Texas, Kevin seemed sick and wasn't eating much. The doctor diagnosed him with a cold and said the boy was well enough to travel. Instead, he grew sicker and sicker on the trip.

They rushed him home and he was admitted to the hospital with pneumonia. His T-cell count dropped to zero.

So he could recover from the pneumonia, doctors induced a coma. "His body was worn out. He needed time to rest and heal. They told us they'd done everything they could do, and they really thought he was going to die," says Sandra.

As a last resort, they tried a drug used on premature infants to develop their lungs. This helped and he soon began to recover.

But doctors still didn't know what had caused his illness. They looked for everything, including cancer and Legionnaires disease. An HIV test turned out negative, because the tests of the day weren't as accurate. Doctors never gave it a second thought, since they didn't suspect his parents were infected.

When he was 8 months old, they again tested him for HIV and found him infected. And John and Sandra learned they too had the disease.

The couple believes Sandra was the first to become infected in 1985. She needed a blood transfusion at a time when blood screening procedures were just being implemented. With a rare blood type, they believe Sandra got an infected batch that slipped through.

The couple's own health has been relatively good. They haven't had any of the illnesses related to AIDS.

And for that matter, neither has their son. Aside from his bout with pneumonia, he hasn't had any of the diseases associated with AIDS. His days are spent getting tutored in his home and playing.

Children infected with HIV present unique problems for doctors because they don't have the same arsenal of drugs for children that they have for adults. Of the 11 drugs approved to treat AIDS, only six have been approved for children. Drug testing for pediatric use can lag months or years behind that of adults. Doctors may prescribe adult medications to children, but the effects are unknown and could do more damage than good.

Dr. Pisespong Patamasucon, a pediatrician specializing in infectious diseases at the University of Tennessee Hospital, says giving medicine to children is not simply a matter of reducing the dosage.

"A child is not a small adult. They don't function the same way," Dr. Patamasucon says. The difference is children have undeveloped immune systems.

In his first three years, Kevin had a T-cell count that dwelled treacherously at three. T-cells kill off invading viruses in a body. An average count ranges between 800 and 1,200.

About six months ago, Kevin started getting one of the new protease inhibitors approved for children. These drugs work by inhibiting the protease enzyme, which HIV needs to replicate. The drugs have given many AIDS victims hope of leading a normal life. But the medication is not a cure for the illness, and some experts are skeptical about how long they will work.

With the new medicine, Kevin's T-cell count has climbed to almost 400. He has been eating more, sleeping less, and feeling better, his parents say.

Although relatively healthy, Kevin has had to live with several side effects from his medication.

Kevin cannot walk. His medication has stiffened the muscles in his heels and weakened his legs. He moves around the house on his knees or by crawling. With the help of a walker, Kevin can maneuver around on his tiptoes.

John lifts his son's 28-pound frame behind the U-shaped metal walker. The boy plows his body across the room, past a chair covered with his Winnie the Pooh and Tigger dolls, and runs into a corner. His father turns him around and Kevin is off again, this time into the kitchen.

Kevin can't eat. Children typically learn to do that at 3 months old, which is when Kevin was in his coma. Aggravating the problem is an on-and-off battle with thrush, a mouth and throat infection that makes it painful to swallow.

His parents tried everything to get him to try food, but so far he's refused. He does drink liquids.

Until recently, he was fed by a tube stretching from his nose to his stomach. That became problematic. When it would come out, they'd have to go to the hospital to replace it. Once the family cat playfully snagged the dangling plastic and pulled it out, leaving Kevin in tears.

Doctors eventually installed a six-inch feeding tube through his stomach.

"In the beginning, we were a little afraid of it. Now it's nothing," John says. "I was always afraid of pulling it out." Now when it happens, his parents simply attach a new one.

Every four hours 'round the clock, they give the boy 100 ml of a nutritional supplement. The feedings are spaced out because Kevin has problems keeping his food down. Too much at one time and he will vomit.

When it's time for Kevin to eat, John pours a can of Deliver into a glass and warms it slightly in the microwave. He mixes in 10 ml of vegetable oil for extra calories. Spreading a polka-dotted quilt on the carpet, he places a pillow on it and lays Kevin on top. The boy knows the routine. Staring up at Scoobie Doo on the TV, he giggles while his father prepares his feeding tube.

The food gets into his stomach using a plunger that looks like the end of a large hypodermic needle. It takes about 10 minutes.

Afterwards, his father lays him down in the bedroom with the family cat. The child can be heard giggling from the other room. After about several minutes, John brings him back to the living room. Gas from the food has upset his stomach. Straddled against his father's chest, Kevin grimaces, his constant giggle turning into a slight moan. John pats his back lightly.

Of the 21.6 million people with AIDS in the world, 830,000 are children. In the United States, there are 7,902 under 13 with the disease. The theme of this year's World AIDS Day on Dec. 1 was "Giving Children Hope in a World With AIDS."

Locally, the number of children infected with HIV is very small. In the 16-county region including Knoxville, the Health Department reports nine children have been infected with HIV, including four who have died.

"We really don't have that many children in Knoxville who have AIDS," says Dr. Jeannie Gillian, director of The Hope Center. "It used to be when a pregnant woman had HIV, everyone took it for granted that the child would be born with the virus."

With the new drugs available, doctors have a good chance of keeping a pregnant woman from infecting her fetus. The rate has dropped from 35 to 8 percent, she says.

"The problem nobody's talking about is women are still being infected. So chances are greater a pregnant woman will have HIV," Gillian says.

AIDS is the leading cause of death among Americans aged 25 to 44. It is the leading cause of death among African American woman aged 25 to 44. It is the third leading cause of death among all U.S. females.

Based on the seventh floor of the Fort Sanders Regional Medical Center, The Hope Center is a resource and advocacy group for HIV victims, their family, and friends.

Although many children of AIDS victims don't get the disease, they are still affected. Many will end up orphans. Those with the disease may die before their parents.

"You're not supposed to see your children die. You're not supposed to see them suffer," Gillian adds. "If the children do not have HIV and mom thinks she's going to be dying soon, you can imagine what that's like. For some of the mothers, they can't stand the thought of dying and leaving the child alone."

Facing the disease together often gives AIDS patients the hope and strength they need, Gillian says.

"A lot of the adult parents have actually gotten better. They think, 'Oh, my gosh, I've got to get better because my little girl has got to be taken care of,'" she says.

Sandra and John try to live as normal a life as they can. They've had abundant support from their families and friends, but they fear being ostracized by the community should their illness become public.

Their son gets tutoring at home, and his doctor said she's determined to see Kevin graduate from high school. For now, he doesn't have much contact with other children since he doesn't go to school or day care. His parents worry about too much contact with other children, because it will expose him to illnesses.

"We are no different than any other family who has a sick child," Sandra says.

"We can have as normal a life as anybody else," her husband says.

"As chaotic a life as anybody else," Sandra corrects, and they both laugh.

After a few minutes of pats from his father, Kevin has stopped moaning, but his face is still anguished. He begins tapping his tiny hand against his father's back.

"Are you trying to put me to sleep?" his father asks.

"Yeah," the boy whispers.