Years After Epidemic, Zika Continues to Impact Lives

In 2015, a mosquito-borne virus called Zika caused an international health emergency, with its epicenter in Brazil. Although much of the crisis dissipated by the end of 2016, it spurred debilitating health challenges in the South American country that families will never escape. 

“For much of the world, Zika was a blip on the radar,” says Eliza Williamson, Ph.D. a postdoctoral associate in global social medicine and health humanities at the Duke Global Health Institute. “It continues to deeply shape the lives of affected children and mothers long after the epidemic was declared over.”

A few months after the initial outbreak, doctors noticed mothers diagnosed with Zika gave birth to babies with microcephaly, a condition marked by malformations such as small, misshaped brains. Thousands of children now live with Congenital Zika Syndrome (CZS). 

“Zika disproportionately affected structurally vulnerable communities in Brazil, primarily Black and brown women,” says Williamson whose research is based in Salvador, the capital of Bahia in northeastern Brazil. “For Zika and other mosquito-transmitted viruses, where people live matters as it reflects broader social inequalities.” 

Williamson, a cultural medical anthropologist, discussed her current research during a Think Global event on April 9. Her work seeks to better understand the lived experiences of families by way of ethnography, which  centers the everyday life of people in a study through immersive fieldwork. She hopes those findings can better inform officials about the type of care needed for two primary groups – children who will continue to grow older with CZS and the mothers who’ll provide their care for a lifetime. 

Williamson began visiting Salvador in 2016 and has closely followed a group of mothers whose children have CZS. Many children suffer from a range of health issues such as motor impairments, seizures and cognitive delays. In response, mothers developed chronic, health issues after becoming full-time caregivers. Many can’t afford to pay for specialized care for their children because of limited income. In Brazilian culture, women are the primary caregivers to children and sick family members. 

“Mothers have restructured their lives, even leaving the workforce, to care for their children full-time,” she adds. “Some mothers had their existing illnesses exacerbated from the intensity of their care responsibility.”

During the outbreak, more than a billion dollars in global funding targeted surveillance, education and control as Zika infected millions and spread to more than 45 countries. To this day, no official funding has been allocated to aid families with CZS. Parents have become their own advocates, forming support groups such as Associação Abraço a Microcefalia, which means “I Embrace Microcephaly” in Portuguese. Groups help parents create care plans for children that include healthier diets and stimulation therapy to minimize joint pain. 

“We haven’t had another wave of Zika, and part of documenting the aftermath is to articulate why [what happened] is so important,” Williamson says. 

During Williamson’s early years of research in Bahia, she helped stock and distribute donations and hosted workshops for mothers. But as children began living longer with CZS, what Williamson provided shifted with their needs. She’s drafted policy seeking health justice for families since Brazil’s public health system remains crippled by underfunding. Families often endure long wait times for provider visits and critical surgeries for children with CZS.

Williamson says the impact of Zika reveals a health crisis doesn’t end when infection rates become low. Officials understanding the full scope of an outbreak will remain incomplete if they neglect to provide aid in the aftermath when people are forced to live with long-term health effects. Similar was seen during the COVID-19 pandemic as many developed what health officials called Long Covid, marked by fatigue, shortness of breath and even brain fog. 

“[During Zika], there was a flurry of attention to these families and their children, but they were worried about what their futures would look like after the attention died down,” Williamson says. “How would their children’s condition progress or change as they grew? What would that mean for families? That’s why I decided to follow that thread.”

Understanding what people need can’t be done from afar, but only at the ground level, Williamson says.