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Taking care of the children

Babies born with HIV are growing up, coming of age and wondering just how their disease fits in to their lives

BY CURTIS L. TAYLOR | Newsday Staff Writer

June 8, 2006

Mother Clara Hale cares for Monique Raveau in this January 1985 file photo. Hale took in many children who had lost their parents to AIDS or who were themselves born infected with HIV. (Newsday Photo / J. Michael Dombroski)

They were the youngest victims of the nation's AIDS crisis: infants infected by their parents.

In Harlem, Mother Clara Hale kissed and cradled babies born with the same death sentence handed to their parents, who were too weak to care for them. The media beamed their photographs around the world, giving the deadly disease an infant's face.

Now in the developed world, pediatric HIV/AIDS is rare in children born since 1997, according to state health officials.

The risk of HIV transmission to the newborn is less than 2 percent if the mother receives antiretroviral therapies during pregnancy. The treatment didn't exist 25 years ago.

The advances came too late for Denise, 45, of Manhattan. Her daughter was born with the virus and died from related complications at age 6.

"My boyfriend knew he was positive and took the lives of two people," said Denise. She declined to give her last name.

"The big message is that pediatric AIDS is a vanishing disease," said New York State Health Commissioner Antonia Novella. "The success has been great, but there remains challenges to HIV/AIDS education and prevention. It is important for us to reach, in particular, women, because the trends show that more and more women are testing positive for HIV."

Pediatric cases are so few that several pediatric hospital AIDS units in the state are considering closing, Novello said. Pediatric diagnoses peaked in 1992 with nearly 250 cases. Since 1992, the number of pediatric AIDS diagnoses has dropped to 20 or fewer per year, according to the state health department. State health officials credit the decline to new drugs and strong perinatal prevention programs, including HIV counseling and rapid testing.

Catching it early

But they say early diagnosis is key. Twenty-five percent of pregnant HIV-infected women who do not receive AZT (known generically as zidovudine) or a combination of antiretroviral therapies pass the virus to their babies, according to the National Institutes of Allergy and Infectious Diseases.

New York State has 2,100 children and teenagers living with maternally transmitted HIV or AIDS, with 42 percent under age 13, according to Gus Birkhead, director of the New York State AIDS Institute.

As of December 2004, there were 1,773 people living with HIV and 833 people living with AIDS who were diagnosed before age 13, Birkhead said.

All newborns are now tested for exposure to the virus in New York State.

"Years ago, when the testing came up, there was a lot of opposition ... but I think people now generally recognize this as a universally good thing," said Dr. Scott Kellerman, assistant commissioner of the city's Department of Health and Mental Hygiene, who oversees the HIV/AIDS bureau. "The results back this up."

Smashing stereotypes

Annie Murphy, deputy director of Hale House, said Mother Hale helped break the stigma. Beginning in 1969, Mother Hale opened her home to hundreds of infants whose addictions and HIV were passed along during pregnancy. She died at 87 in 1992 from stroke complications.

"It was a situation where no one would care for these sick children," Murphy said. "Today, we don't see a lot of babies coming to Hale House that are infected. They still have developmental issues, but not the virus."

The HIV drug therapies are also helping those born with the virus to live longer. Consequently, new health needs have emerged.

Dr. Sharon Nachman of Stony Brook University Hospital said that pediatric AIDS care is rapidly evolving as the babies grow into adolescents. Then, they must deal with issues of sexuality, chronic disease and childbearing, she said.

"Babies with the virus are now aging into adolescence to adulthood like normal children," said Nachman, director of Pediatric Infectious Diseases at Stony Brook University Hospital. "We have kids going to college, wanting to be doctors, lawyers, baseball players. They have a future."