For Brazil’s Zika Families, a Life of Struggle and Scares


On the bench that Monday, Ms. Vieira barely registered that it was her 26th birthday. Over the weekend in Olinda, their hometown up the coast from Recife, Daniel had convulsed in seizures for three hours straight, his lips purple. Ms. Vieira feared he would stop breathing, but couldn’t get to a hospital with doctors on duty from her downtrodden neighborhood at that late hour, when rats scurry on the rutted roads but no buses were running.

She and the other mothers compared notes. One said she briefly couldn’t find her baby that morning, then noticed he’d rolled off the bed. “That’s good,” another said. “He moved. I wish I had a baby like that.”

Suddenly, a van appeared, transporting them to a beauty parlor for pampering paid for by a local singer. At the Velvet Salon, the air was gauzy with hair-product mist. Mothers rested their babies on red-tufted settees.

Ms. Vieira left Daniel with a cousin because being inside too long agitated him. She chose a pearl-colored manicure: “She Said Yes” as a base coat, “Kitty White” on top. A hairstylist turned her unruly dark curls straight and shiny. Gazing into a mirror, she snapped a selfie. “Look at me!” she crowed.

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Ms. Vieira carried Daniel as she picked up João Pedro from kindergarten. She worries that she is not paying enough attention to João Pedro given the relentless attention Daniel requires.

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Adriana Zehbrauskas for The New York Times

The respite was short-lived. That afternoon, Daniel’s medicine ran out and Ms. Vieira had no money for more.

Daniel’s very conception defied the odds. Ms. Vieira developed uterine cancer when her other child was a toddler. She had resisted doctors’ advice to have her uterus removed, even though they said her chances of having another child were slim.

While undergoing chemotherapy, she began dating Dalton Douglas de Oliveira, five years her junior, who attended her evangelical church. They rushed marriage so their church wouldn’t learn of their premarital sex.

A month after the wedding, she learned she was three months pregnant. “It was the biggest joy of my life,” she said. Her husband was excited, too. “We wanted to have our child,” he said.

Still, “the belly condemned us,” he said, causing stress because what had clearly been a pre-marriage conception prompted the church to bar them from communion for months.

Five months into pregnancy, Ms. Vieira became distraught when a doctor said that an ultrasound showed hydrocephalus, a fluid-filled brain, and that the baby might die, she recalled.

But at seven months, another doctor disagreed, saying, “Look, your son is special, he has a small problem, but what he has is microcephaly,” Ms. Vieira said. “It was good news.”

Her relief evaporated after Daniel’s birth. “I thought it was God’s punishment because I got pregnant even though I was not supposed to,” she said.

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Adriana Zehbrauskas for The New York Times

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Top, a neighbor holds Daniel as his mother waits for the bus to Recife from their home in Olinda. Bottom, Ms. Vieira holds Daniel on the bus ride. Since Daniel’s birth 16 months ago, Ms. Vieira has separated from her husband, lost monthly government assistance, relinquished a job and now patches together a livelihood with other government help.

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Adriana Zehbrauskas for The New York Times

Caring for a sick child strained the couple’s relationship. Daniel cried so inconsolably that “I thought my life would end,” Ms. Vieira said. Mr. de Oliveira said his wife would not ask him for help and admitted he was too angry at her to offer. “My problem was direct with her and not with the baby,” he said.

At two months, Daniel awoke laboring for breath. At the hospital, Ms. Vieira recalled, doctors suspected mold or dust at home was aggravating his lungs, and recommended improving their home’s air quality or moving.

Mr. de Oliveira thought his wife, long embarrassed by their church-owned, rent-free home, was exaggerating. She found another house; he declined to move.

Things exploded after that. Ms. Vieira gave television interviews claiming her husband “would not give attention to the boy,” she said, adding that the publicity prompted donations from abroad. He retaliated, posting a video insulting her. She began dating and told him, “You are not going to see your son,” he said. After technical disputes about child support, he stopped paying. And when he ignored her on the street, she told people he was really shunning Daniel’s illness.

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Ms. Vieira changing Daniel after bathing him. For a while, a local group of police officers chipped in to help her get anti-seizure medicine for Daniel.

Credit
Adriana Zehbrauskas for The New York Times

Ms. Vieira, a former supermarket bakery worker receiving government assistance for cancer, struggled to afford Daniel’s seizure medicine, Sabril, about 300 reais ($97) a month. To help, a group of police officers began buying it, and she and other mothers sometimes shared pills.

But Daniel’s seizures worsened, seemingly weakening his ability to support his head. She made a cellphone video documenting one episode. “Do you see his little shoes shaking?” she asked.

Ms. Vieira started giving Daniel more Sabril — three half-pills daily instead of the prescribed two. After his three-hour seizure crisis, she gave him four. Then she ran out.

“I had this crazy feeling,” she said. “He had to take the medication, no matter how.”

She called the police officers, but they couldn’t gather enough money. She texted 319 U.M.A. members on WhatsApp. Hours passed. Nobody had extra Sabril.

Desperate, she called her estranged husband at his plaster business, demanding the unpaid child support.

“If I had it, I would have given it to you,” he said.

Borrowing his mother’s credit card, he visited five pharmacies before finding Sabril. Ms. Vieira, in a turquoise U.M.A. T-shirt that said “Microcephaly, it’s not the end,” made him pass the medicine through the window bars of her mint green, metal-roofed house.

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