In February 2016, the World Health Organization (WHO) declared Zika virus a Public Health Emergency of International Concern. Brazil, the epicenter of the Zika outbreak, caught global attention with a surge in newborn babies born with small heads due to a birth defect called microcephaly. Though the spectrum of complications is yet to be fully understood, microcephaly is now known to be only one of many neurodevelopmental abnormalities that fall under congenital Zika virus syndrome (CZVS). There are currently thousands of confirmed and suspected cases of CZVS in Brazil, many of which are clustered in the country’s northeast region.
The WHO announced the end of the Public Health Emergency in November 2016, but the weight of this outbreak will be felt for generations, particularly by the families of infants born with CZVS. The range of developmental disabilities associated with CZVS, from hearing loss to vision impairment to joint problems, means that many affected children will have lasting special needs. While resources are being poured into vaccine development and preventative efforts to control the spread of Zika, much less is being invested into addressing the long-term health, social, and economic impacts of Zika on children and their families.
In this project, student fellow Poonam Daryani from Johns Hopkins Bloomberg School of Public Health explores the lives of those caring for and raising children with CZVS. How are families coping and responding? Are they being supported by local governments and healthcare systems? Given the concentration of cases of Zika and CZVS in areas historically characterized by inequity and poverty, this project amplifies voices within communities that may otherwise be overlooked—sharing stories of care, adaptation, hardship, and resiliency.