Researchers at RTI International and Brazil's Altino Ventura Foundation, helps answer these questions and more by bringing together new evidence about prevention, lessons learned, and suggestions for a path forward concerning the Zika virus. The study was published in the journal Pediatrics

The impact of congenital Zika syndrome on families will be substantial and will last a lifetime, given its severity and uncertainty about long-term outcomes for infants.

Families who have a child with congenital Zika syndrome face an immediate set of demands for specialized caregiving and other factors, such as societal stigma, limited professional knowledge about congenital Zika syndrome, and uncertain future outcomes for their child.

Since Zika is a relatively new public health concern, there is a lack of specialized knowledge on the life expectancy of these infants and the long-term health problems they will experience.

Congenital Zika syndrome refers to the pattern of birth defects among fetuses and infants of mothers infected with Zika virus during pregnancy.

The effects of Zika virus can be severe and include microcephaly where the skull has partially collapsed, decreased brain tissue, joints with limited range of motion, nervous system damage, and other health issues.

Microcephaly has been linked with developmental delay, seizures, intellectual disability, feeding problems, and hearing and vision loss.

"It's safe to say that most children with congenital Zika syndrome will have major impairments that will not be easily treated by surgery, medication or therapy services," Bailey said.

"This supplement synthesizes available information for pediatricians to inform their clinical practice, and will help guide the research agenda and shape public policy for addressing the impact of Zika going forward."

Researchers suggest four practice areas to support families who have a child with congenital Zika syndrome:

  1. Provide accurate and understandable information about congenital Zika syndrome
  2. Use active surveillance to identify emerging needs
  3. Enable access to formal support services and informal support systems
  4. Provide both general and targeted interventions as needed to support child health, development and positive familyadaption

RTI and the Altino Ventura Foundation are currently examining the health and development outcomes of infants most severely affected by the Zika virus in Recife, Brazil.

Researchers are following 200 infants with congenital Zika syndrome and their families to understand the ongoing health impact, why some babies affected by the virus develop more normally than others, and if more positive prognoses are linked with family or environmental characteristics.

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.