Brazilian women with Zika-infected babies pray for cure
CAMPINA GRANDE, Brazil — Miriam de França Araújo has had the same routine for the past year. On Wednesdays and Fridays, she wakes up before dawn, wraps her 1-year-old child, Lucas, in a thick blanket and gets into a white Volkswagen van that will rumble across dirt roads and a newly paved highway to a hospital nearly three hours away.
Lucas was born in September 2015 with a small, misshapen head, quickly diagnosed as microcephaly, a birth defect rarely seen by the doctors who delivered him. Within months, doctors across Brazil’s impoverished northeast were growing increasingly alarmed by an unprecedented spike in microcephaly cases, which they eventually linked to the mosquito-borne Zika virus that had recently arrived in the country.
“Nobody knew what Zika was,” Araújo told USA TODAY. “Nobody even knew the word.”
Araújo was among the first group of mothers and infants to be enrolled in a new microcephaly unit at a local hospital here, where a team of doctors and therapists treat children born with Zika-related disorders.
The microcephaly unit has become a place of solidarity, where more than 100 women — many of them poor — lend each other support, share ideas and discuss ways to advocate on behalf of their children.
“We formed a family, including with the doctors and nurses,” Araújo explained. “We’ve developed an intimacy, learned each other’s stories and found a place to blow off steam.”
Colorful scenes of children and animals are painted on the walls of the unit, where mothers and babies laugh and swap stories.
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On a recent day while waiting for appointments, the women discussed the difficulties they face. Araújo’s experience is typical: Lucas is the only baby with microcephaly in her small town, and prejudice from neighbors is a frequent topic. “Sometimes they don’t have to say anything, the look they give us says everything,” said Adriana Ferreira Alves, as she bounced her baby, Maria Sophia, on her lap.
Only one in six families lives in Campina Grande. The rest travel as much as four hours for appointments. Transportation is an ongoing source of anxiety, as van services provided by local municipalities are often late or canceled. “It is very humiliating,” Araújo said.
Concerns about access to benefits and medical costs are also prevalent. A lawyer has started to meet with the families to ensure they are receiving government services. Still, many of them struggle to pay for basic needs such as diapers and formula, to say nothing of advanced procedures and medicine.
One mother considered selling her cell phone to pay for the tiny prescription glasses that would help her baby see.
“It never entered my mind that she could be born like this,” said Ferreira Alves, who contracted Zika during the third month of her pregnancy. Maria Sophia, who was born last January, cannot hold her body upright and closes her eyes in the light.
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"At first, I blamed myself, thought that I hadn’t done things right. I cried a lot and became depressed,” she said.
Psychologist Jacqueline Loureiro leads group therapy sessions to help the women cope with wide-ranging emotional issues. “Every pregnant woman thinks, ‘I want my child to be born a certain way.’ When you discover a malformation, this idea is broken,” she explained. “They need to experience mourning for this idealized child in order to accept the real child.”
Adriana Melo, a fetal health specialist who first made the connection between Zika and microcephaly a year ago, is the public face of the program. She has traveled to conferences across Brazil and abroad, presenting the group’s research findings and lobbying for additional funding.
“This first generation of mothers didn’t know about the mosquito, and they have provided all the answers to the world,” she told USA TODAY. “They offered their amniotic fluid, they offered their babies’ blood, had their babies undergo scans and tests.”
Melo and other doctors are raising funds to open a clinic where infected children receive treatment and mothers assist in groundbreaking research.
Joelma dos Santos, 25, gave birth to her third child, Lorena Cecilia, last month, and while the baby's head circumference is within the normal range, dos Santos had contracted Zika during pregnancy, and worrisome brain scans led doctors to flag her for additional testing after birth.
She is an example of the new cases that Melo is concerned about: babies who outwardly appear healthy, but who may exhibit delayed developmental problems related to Zika. She hopes that by building a bigger clinic, doctors will be able to monitor children for three years.
Dos Santos and her husband, José, expressed joy that their child was born without microcephaly. “I was so worried at first,” José said through tears of relief. “To have a daughter with microcephaly is so difficult these days, but thank God the latest ultrasound looked normal.”
After spending the morning at a party hosted by the hospital to celebrate Lucas' and other babies’ first birthdays, Araújo gathered him and her 7-year-old daughter, Maisa, for the long trip back to her family’s farm.
Finally back at home, she organized Lucas’ seven medications and prepared for the next day’s journey back to Campina Grande for a monthly appointment with the ear, nose and throat doctor.
“What matters most to me is his health. Every time he responds or gives me a smile, it is everything,” she said.
While Araújo and her mother prepared dinner, her father, Eluizo, sat on the porch with Lucas in his arms. He recalled a parable from the Bible’s Book of Revelation in which a dragon attacks a woman holding her newborn baby.
“I thought, my God, that dragon must have been enormous,” he said. “But as things often are in spiritual matters, the dragon that appeared to us is the tiny mosquito, causing so much destruction, attacking the brains of children.”
He described how the earth saved the woman and her baby from the dragon at the end of the parable, offering a hopeful conclusion.
“Who knows,” he added, looking down at Lucas with a smile. “We are always searching for new discoveries. The whole world has already declared: we are going to fight this dragon.”