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

© Private
This dispatch is part of a series focussing on children with zika syndrome and their families. To read more, please visit the blog: Zika: Brazil's Forgotten Families.
 
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 outbreakin 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.
 
 
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.”

When Gaby was a baby, Carol was a student but had to balance studying with traveling twice a week from her town to a larger city, an hour each way, to take her daughter to physical therapy. Despite the difficulties, Gaby’s parents adored her and were determined to give her the best care they could. They even started a blog, #SomosTodosMariaGabriela (“We are all Gaby”).

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

© Private

Since then some things have changed – Gaby’s brother João Miguel was born last year, and her older brother João Gabriel is 5 and going to school. Carol got a scholarship to study to be a nursing technician, but can only attend school on Saturdays when her husband Joselito stays at home with the kids.

Gaby too has changed, her needs becoming more complex as she gets older. The family recently learned that she needs a special thickening agent added to her food to keep her from choking and nutritional supplements. She has a dislocated hip, which will eventually require surgery, and she needs braces to stabilize her limbs. All this costs far more than the 954 reais (about US$ 240) a month stipend they receive for Gaby’s needs that the whole family is living off.

At least one thing has stayed the same. Gaby is utterly and unconditionally adored.

Carol and Joselito spend many of their days petitioning authorities to get the services Gaby needs. 

“We are fighting for Gaby’s rights,” Carol said. But the family wants to do much more than that – they want to fight for the rights of all children with Zika syndrome.