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What are the health and developmental impacts of babies affected by congenital Zika syndrome?

RESEARCH TRIANGLE PARK, NC— The Centers for Disease Control and Prevention reported that one in 10 pregnant women with confirmed Zika infection had a fetus or baby with Zika-related complications in 2016.  The proportion of Zika-related birth defects in 2016 was almost 20 times higher than in pre-Zika years.

Researchers from RTI International and the Altino Ventura Foundation in Recife, Brazil, are on the ground examining the health and developmental outcomes of infants most severely affected by the Zika virus in a new study to better understand and address the needs of these infants and their families.

“The Zika outbreak and its devastating impact on infants has left many families with questions and challenges about the long-term implications of raising a child with often severe and limiting disabilities,” said Don Bailey, Ph.D., distinguished fellow and director of RTI’s Center for Newborn Screening, Ethics, and Disability Studies. “There’s an urgent need to help these families better understand and determine the best treatment options.”

Congenital Zika syndrome refers to birth defects among fetuses and infants infected with Zika virus. The conditions can be severe and include microcephaly where the skull has partially collapsed, decreased brain tissue and joints with limited range of motion, and other impairments. Microcephaly has been linked with developmental delay, seizures, intellectual disability, feeding problems, and hearing and vision loss.

The new five-year study is funded by the Eunice Kennedy Shriver National Institute of Child Health & Human Development of the National Institutes of Health, and the Fogarty Institute. Researchers will follow nearly 240 infants with congenital Zika syndrome who were among the first babies born when the Zika epidemic came to light nearly two years ago.  

The study aims to understand why some babies affected by the virus are developing better than others and if better prognoses are linked with characteristics of the child, family, and/or treatments. Researchers will assess how these infants are interacting, moving, problem solving and whether they are experiencing health effects such as feeding issues and seizures.

The study also will examine stress experienced by these families, including the mental and physical health impacts, and the role of their social support network. Participating families travel up three hours to visit health clinics.  This information will help researchers better support families and improve treatment for individuals affected by congenital Zika syndrome.

The project is led by RTI’s Don Bailey, Anne Wheeler, Ph.D., along with Camila Ventura, M.D., of the Altino Ventura Foundation. The research will show the effects of early intervention, including speech and physical therapy for infants, and serve as a launching pad for other studies.

“Shortly after the Zika epidemic began, RTI funded studies to better understand the virus,” said Wayne Holden, Ph.D., RTI president and CEO.  “We remain committed to combatting Zika in the United States and around the globe, and this study will go a long way to helping us understand the long-term effects of Zika and the support that affected families need.”  

RTI researchers have been at the forefront of Zika virus research to help communities worldwide understand and stop the spread of infection. To learn more, visit RTI’s Zika research webpage