Where Have All the “AIDS Babies” Gone? A Historical Memoir of the Pediatric AIDS Epidemic in New Haven and its Eventual Eradication

S.L. was one of our first HIV-positive babies. He was born at Yale-New Haven Hospital (YNHH) in 1982. His mother was a sex worker who also injected drugs. He died at 3½ years following multiple episodes of opportunistic infection and metastatic lymphoma. In the years between 1986 and 1990, 163 HIV-positive mothers gave birth at YNHH. The mother-to-child transmission (MTCT) rate was 20 percent. Women represented 8 percent of all HIV cases in the US compared with 29 percent in New Haven. We had a six times greater proportion of children living with HIV. The mean number of HIV-exposed babies rose annually from 26 (1985-87) to 37 (1988-90). Our first team of caregivers comprised a nurse practitioner, a social worker, and me. We were, in time, joined by a growing number of colleagues. Enlightened and generous hospital administrators provided us with outpatient space and the promise of continued funding to support additional staff and in 1987, an independent Pediatric AIDS Care Program. We implemented the proven MTCT prevention guidelines articulated in the Pediatric AIDS Clinical Trials Group (PACTG) protocol 076 and by 1995, the MTCT rate at YNHH fell to 9 percent. Since 1996, the MTCT rate at YNHH has been zero percent. Combination antiretroviral therapy, cART, made its debut in the mid-1990s; five classes of drugs with multiple agents in each were licensed between 2003 and 2013. We designed individual treatment plans for each child and gradually entered an era when our clinic was populated with healthier long-term survivors. Our Program flourished, based on a multidisciplinary approach which honored interprofessional collaboration.