Inquiry Line (Signal only)

Live Broadcast

An HTTP error occurred during file retrieval. Error Code: 405

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

Facebook
Twitter
LinkedIn
Pinterest
Pocket
WhatsApp

Fluffy clouds fluttered over Maria Farinha Beach one Sunday morning and vendors traipsed through the coconut palms selling quail eggs.

Thank you for subscribing.

An error has occurred. Please try again later.

You are already subscribed to this email.

View all New York Times newsletters.

She told her mother: “I have to make my daughter walk. If she cannot walk, she is going to be able to see.”

Everything changed. Through rigorous exams, she had qualified for a competitive school, but she switched to a night school. She now takes Alícia to at least two therapy and doctors’ appointments daily, usually in Recife, two hours and at least two bus rides from her hometown, Paulista. She moved in with her mother and 17-year-old sister, who watch Alícia while Íris attends classes from 7 p.m. to 10 p.m. Afterward, she does homework, then rises when Alícia wakes, often at 4 a.m.

On Alícia’s first birthday, Íris had planned visits to three clinics for vision, touch and physical therapy. They also visited Dr. Cristiane Marcela Santos, an ear, nose and throat specialist at Agamenon Magalhães Hospital.

“Fifteen?” Dr. Santos exclaimed, stunned that Íris was so knowledgeable. “You are 15 years old?”

Everywhere, Íris said, “I ask a lot of questions.”

In pink shorts and lavender top, Alícia’s body resembled a 1-year-old’s, but her head was 36 centimeters in circumference, well below normal. Her good hearing and diminished irritability are positive developments, but other symptoms include tight muscles. To keep her hands unclenched, her fingers were splayed open with bright pink tape, which is sometimes also applied to relax her back and chin.

Dr. Santos asked about Alícia’s early brain scans.

“Calcification in almost all of her brain,” Íris replied.

“Has she ever gotten so suffocated that she turned purple and you had to tap her back?”

“It happens a lot,” Íris said.

“Very serious,” Dr. Santos said.

As a mother, Íris seemed “very secure and mature,” Dr. Santos said. “Life made her like this. They stop their own lives so they can live their children’s lives.”

Now just past her 16th birthday, Íris has no time for angst.

“I changed my life for Alícia,” she said. “It was me for her and her for me.”

Daniel

Benches were filling with Zika mothers outside the Association for the Assistance of Disabled Children in Recife when Jaqueline Vieira arrived, cradling her son Daniel, his head too small for his toddler-size body, his fingers folded into fists.

Blue eyeglasses were strapped to his head, and blue braces decorated with pictures of Mickey Mouse were strapped to his legs. The braces were supposed to be worn all day to fix his outward-pointing “ballerina feet,” Ms. Vieira knew. But the metal scratched her and made cuddling Daniel uncomfortable, so she mostly put them on for public outings.

It was the kind of balancing act she’d become used to. Raising Zika babies is hard enough for families with stable marriages and incomes. But Zika has ripped some marriages apart and torn economic safety nets. 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.

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.

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.

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.

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.

Soon after, the government stopped Ms. Vieira’s cancer assistance, concluding that she could work. But she felt unable to handle a job, and now collects unemployment and will apply for government Zika benefits.

Mr. de Oliveira, 21, resumed paying child support, and increased the amount. Ms. Vieira now allows him to see Daniel.

“I still pray to God so that he can be a healthy and perfect child,” he said. “I keep asking, keep asking, keep asking.”

The afternoon after the medication crisis, Ms. Vieira, sifting among pregnancy ultrasounds showing Daniel’s underdeveloped head, found a photo of him smiling. “I love this smile,” she said. Because of Daniel, “I am a better human being,” she said, adding that “if I had had a normal baby, I would not have given as much attention.”

She worries about being inattentive to her 5-year-old, João Pedro. Even while walking him home from school, she carries Daniel, shielding him from sun with a turquoise umbrella. One day, João Pedro playfully covered Daniel’s face with his hand, chanting, “Are you smiling?” When Daniel didn’t respond, João Pedro scampered to a rusty playground, near weathered horses nibbling meager grass.

Later, when his neurologist, Dr. Maria Durce Costa Gomes Carvalho, squeezed Daniel into her packed schedule, his rare smile was still absent. He cried and cried. “Look at this tantrum, Daniel, oh my God!” Dr. Gomes exclaimed.

“He did not used to be like this,” Ms. Vieira said.

Dr. Gomes asked if Daniel looked at things.

“Not a lot,” Ms. Vieira said.

“Even with glasses?”

“No.”

Daniel’s medication was adjusted, reducing his seizures. Dr. Gomes couldn’t predict if he would walk or talk. “What matters — right, Jaqueline? — is their every achievement.”

Ms. Vieira sighed. “I cannot wait,” she said, “until he falls out of bed.”

Fluffy clouds fluttered over Maria Farinha Beach one Sunday morning and vendors traipsed through the coconut palms selling quail eggs.

Facebook
Twitter
LinkedIn
Pinterest
Pocket
WhatsApp

Never miss any important news. Subscribe to our newsletter.

Recent News

Follow Radio Biafra on Twitter

Editor's Pick