Zika: Brazil's Forgotten Families

When the Zika virus hit Brazil in 2015, the world learned about it through international headlines and widespread panic. Thousands of infants in northeastern Brazil were born with disabilities linked to the virus. Now, nearly four years later, the families raising children affected by the virus feel all but forgotten. Inadequate support from the government means parents of children with Zika syndrome, many of whom will turn three this year, are struggling to make ends meet while trying to give their children access to the best possible care. In May, Brazil’s Supreme Court will hear a case that could expand families’ access to state benefits, among other things. Here are some of those families’ stories about life, work, their children’s milestones and challenges, and how they have been coping.

Brazil’s Forgotten Families Deserve More

Davi at church with his mother Kássia, his father Daniel and his older sister Maria Clara.

© 2019 Private
 
Every day, Kássia Consuelo Carneiro wakes up at 5 a.m. to get her son, Davi, ready.
 
Davi, almost 4, is one of many children in Brazil with Zika syndrome, meaning he has a range of disabilities and health issues. He does not talk, but he understands everything his parents and older sister say. Human Rights Watch first met Davi when he appeared in a video and a report by Human Rights Watch exploring the impacts of the 2015-2016 Zika outbreak in Brazil´s northeast. 
 

Video: Zika Moms Fight for Help from Brazilian Government

Brazil has not addressed longstanding human rights problems that allowed the Zika outbreak to escalate, leaving the population vulnerable to future outbreaks and other serious public health risks. 

 
Going out with his mother is Davi’s favorite time, but for Kássia it is becoming more difficult as he grows from a toddler to a child.
 
In Brazil’s northeast, most public buses are not wheelchair accessible and Kássia said those that are often won’t stop because drivers see it as too much work to deal with someone in a wheelchair.
 
Kássia has taken to carrying Davi when they need to take the two-hour journey to his daily therapy sessions. But he is 12 kilos (26.5 lbs) and growing, and she is developing back problems. Soon, she will no longer be able to carry him.
 
Brazil’s Supreme Court was due to rule on a case this week that could have given families raising children with Zika syndrome access to more public services. But the court delayed the case, dealing another blow to struggling families.
 

Brazil Court Delay Leaves Zika Families in Limbo

Maria Gabriela Silva Alves (“Gabi”), age 2, with her mother, Maria Carolina Silva Flor (“Carol”), at their home in Esperança, Paraíba state, Brazil in 2018. Gabi was one of thousands of children born with disabilities caused by exposure to the Zika virus in utero during the 2015-2016 outbreak.

© 2018 Joselito Alves dos Santos

Families raising children with Zika syndrome face yet another delay in their struggle to secure the help they need after Brazil’s supreme court withdrew a significant case from its agenda.

The case, which was filed in 2016, could expand access to public benefits for families raising children with disabilities linked to the 2015-2016 outbreak of the mosquito-borne Zika virus in northeastern Brazil.

The court was scheduled to decide the case on May 22, but late last week, advocates learned the court removed the case from its agenda without setting a new date to issue its ruling.

As children with Zika syndrome grow older – many of them turning 3 or even 4 this year – their needs evolve to include nutritional supplements, surgeries, expensive medicines, early stimulation to increase learning development, wheelchairs, and braces, among other things.

Read More.

 

Update: Supreme Court Withdraws Zika Case

Zika Moms Fight for Help from Brazilian Government

In 2017, Human Rights Watch spoke to the mothers of children born with Zika syndrome, here is what they said then. Unfortunately, many things still have not changed, and now we a speaking to these mothers again about what they need, and the help they would like to receive from their government.

Video: Zika Moms Fight for Help from Brazilian Government

Brazil has not addressed longstanding human rights problems that allowed the Zika outbreak to escalate, leaving the population vulnerable to future outbreaks and other serious public health risks. 

Brazil's Zika Babies Are Growing Up

“When the Zika epidemic first happened there was an explosion in the media. Now, these children have been forgotten.”

© Private

Three-year-old Gaby has long curly hair, two brothers, and a wheelchair that helps her get around her home in Brazil.

I first met Carol, Gaby’s mother, when her daughter was about 8 months old. My colleagues and I were researching the impacts of the Zika outbreak in Brazil. Gaby was the first baby born with Zika-related disabilities in her small town in Paraíba state. 

Carol held Gaby in her arms as she recounted the story of her pregnancy and Gaby’s first months of life.

“We are fighting for Gaby’s rights,” Carol said. 

© Private

When Carol came down with a fever, headache, and rash in mid-2015, she didn’t know she was pregnant. She had been taking birth control pills since her 1-year-old son was born. Carol had heard about Zika – a mosquito-borne virus that was spreading in northeastern Brazil – but the effects on fetal development were unknown.

Gaby was born, in January 2016, with microcephaly – a condition in which a baby’s head is smaller than expected and the brain is not fully developed.

“When the Zika epidemic first happened there was an explosion in the media,” Carol said. “Now, these children have been forgotten.”

Read more here.

 

Brazil’s Forgotten Families

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.