Zika hits poor Brazilian parents hardest

It has been one year since health experts tentatively connected the Zika outbreak to a surge in neurological birth defects in northeast Brazil. As the international community rushes to develop preventive vaccines and quell carrier mosquitoes, thousands of impoverished Brazilian families are struggling to shoulder the financial burden of raising babies with microcephaly.

At least half the 2,000 babies with confirmed cases of microcephaly belong to households with an annual income of less than $840. Families trying to survive on such thin wages are hard-pressed to afford food, much less tackle the expense of caring for a child with complex neurological problems.

Researchers estimate the cost of providing lifetime medical care for one child with microcephaly in Brazil at a minimum of $95,000—about half the total cost of the same care in the United States. But those numbers are based on routine cases of mental disability, rather than neurological disorders, said Jorge A. Alfaro-Murillo, a researcher at the Yale School of Public Health. When non-medical expenses and income losses are factored in—like parents quitting work to provide full-time care—the overall financial toll is far higher.

“I wish the government would help us,” said Ana Carla Maria Bernardo, whose infant daughter was diagnosed with brain damage related to Zika. “They have the resources. It’s just a matter of them taking some interest in us.”

But the Brazilian government, already providing a monthly stipend to some Zika-affected families, is similarly strapped for cash. The mosquito-borne pandemic broke out as the country began spiraling into an economic slump, with rising unemployment rates and budget cuts hitting the healthcare sector.

Medical experts say babies with congenital Zika syndrome need close monitoring, since long-term neurological effects are still being studied. Almost all Brazilian children with Zika-linked birth defects are enrolled in basic developmental rehabilitation programs, according to Health Minister Ricardo Barros. But severe neurological complications like seizures and epilepsy require more than rehab. Brazil’s state-run healthcare system is overcrowded and underfunded, and it can take months to book an appointment with a neurological specialist.

“The longer I wait for these exams, the worse it can get,” said Jusikelly da Silva, whose 10-month-old recently began having seizures. “I won’t be able to take care of her.”

The high rate of single motherhood in Brazil further complicates the challenges. According to some counts, more than 30 percent of mothers in the country are unmarried. Additionally, some families are in “precarious” circumstances, according to Simone Jordao, who runs a clinic for special needs children.

“We have many situations where the husband is in prison, for example. … These families need support,” Jordao told the Los Angeles Times.

Some Brazilian states plan to create specialized treatment and development centers for children with microcephaly, staffed with pediatric neurologists, social workers, and physical therapists. But Jailson Correia, health secretary for Recife state, said neither state nor federal officials have provided funds for the project.