It’s been three and a half years since authorities in northeastern Brazil first linked an unusual increase in infants born with microcephaly – when the head is smaller than expected and the brain is not fully developed – to an outbreak of the mosquito-borne Zika virus.
Thousands of children were born with microcephaly and other disabilities linked to the virus – now known as congenital Zika syndrome.
Many of these children will turn 4 this year and their needs are evolving and changing as they grow. The children and their parents need government support more than ever. But despite a flurry of headlines surrounding their births, many families affected by the Zika outbreak now feel all but forgotten.
That could change for the better on May 22 when, at long last, Brazil’s Supreme Court will issue its decision in a case seeking expanded access to public benefits for families raising children affected by the Zika outbreak.
In late 2016, as the first wave of children affected by the virus were turning 1, my colleagues and I interviewed 30 women and girls raising children with Zika syndrome in northeastern Brazil, the region hardest hit by the outbreak.
I remember meeting “Lídia,” who held her son “Danilo,” a 9-month-old boy with Zika syndrome, while we spoke at a public hospital in Campina Grande, Paraíba state. After giving birth to four daughters, she had dreamed of having a boy. “He’s my prince,” she said.
Danilo had vision problems and needed special glasses that cost more than 500 reais (US$126).
“When we got the glasses, he started laughing.”
Lídia used to clean houses for a living but had to stop when Danilo was born. The family desperately needed the money, but she couldn’t manage work and getting Danilo to therapies and medical appointments three to five times a week.
Human Rights Watch published a report in 2017 urging Brazilian authorities to support the families raising children with Zika syndrome, but today, the families we met are still fighting the same battles.
This month, Human Rights Watch will be catching up with families like Lídia’s and finding out how they – and their children – are managing and whether they got the help they needed.