The Brazilian moms fighting for their children 10 years after Zika
MILES PARKS, HOST:
Ten years ago, Brazil was hit with a strange and terrifying health crisis. Moms infected with a particular virus during pregnancy were giving birth to children with a debilitating condition. For a while, the Zika crisis drew a lot of attention, but eventually the world moved on. Reporter Ari Daniel has this story about one group of moms who banded together to make sure their struggle was recognized.
ARI DANIEL, BYLINE: On a Thursday morning, a group of women gather at a local community center.
UNIDENTIFIED PERSON #1: (Speaking Portuguese).
DANIEL: They brought their children who sit in wheelchairs, and they listen intently to a speaker at the front of the room. Partway through the meeting...
RUTY PEREIRA: (Speaking Portuguese).
DANIEL: ...A woman named Ruty Pereira speaks up. "Is everyone eligible for the money?" she wants to know. What she's asking about is something these women have been fighting for, and now they're on the edge of their seats listening for proof that a decade of struggle has at last been recognized.
UNIDENTIFIED PERSON #1: Yes.
(APPLAUSE)
DANIEL: For many of these women, that struggle began in 2015. Ruty Pereira was in her early 20s and pregnant with her first child.
PEREIRA: (Through interpreter) I did all the prenatals (ph), and everything was fine.
DANIEL: But then, when the baby was born, something wasn't right. Her head - it was too small.
PEREIRA: (Through interpreter) They came to me and said, Mom, have you ever had Zika?
PARKS: Zika, a mosquito-borne virus that hijacks a protein critical for brain development - the doctors told Pereira that like many children born to mothers infected with Zika during pregnancy, Pereira's baby, Tamara, had something called microcephaly, an underdeveloped brain. Her baby, they said, was unlikely to ever walk or talk.
PEREIRA: (Through interpreter) My world fell apart. When you plan a kid, it's not only the kid. It's about a whole life, a future, college, house, everything.
DANIEL: Doctors' visits began right away. Some required a grueling overnight ride on the public bus. Later, there were ER visits that went off the rails, like when the medical balloon anchoring Tamara's feeding tube inside her stomach popped.
PEREIRA: (Through interpreter) You know, when you have a special child, you dedicate yourself totally to this child.
DANIEL: Which meant, she acknowledges, she didn't have a lot left over for her husband and his expectations that she cook and clean and care for Tamara. Eventually, after 12 years of marriage, Pereira told her husband she couldn't take it anymore.
PEREIRA: (Through interpreter) A woman, when you are in a relationship, you sort of live for the other person. You stop having your own life. I felt suffocated.
DANIEL: She and Tamara moved out and into a rental apartment in a different neighborhood.
PEREIRA: (Through interpreter) I was all the time alone. It was really hard.
DANIEL: But Pereira was taking her daughter to physical therapy, and that's where she started meeting other moms just like her, women whose lives had also been short-circuited by Zika. Across Brazil, some 3,300 women gave birth to Zika babies over a four-year period. Luciana Brito is a psychologist and researcher.
LUCIANA BRITO: There are long last consequences for these families. For them, Zika - it's not over.
DANIEL: Brito is a codirector of the Anis Institute of Bioethics. She works with communities in the aftermath of a crisis.
BRITO: There is no end for the most affected people.
DANIEL: Brito helped Ruty Pereira and the other moms form a community association to advocate for their needs - their first fight, homeownership.
PEREIRA: (Through interpreter) If you have a house, you have quality of life. You have dignity.
DANIEL: In Brazil, low-income families with a disabled child typically receive free public housing, but that wasn't happening for these moms. They made phone calls, but Pereira says the authorities never responded. So on a hot day in 2020, she joined other moms to protest near a government housing office.
(SOUNDBITE OF ARCHIVED RECORDING)
UNIDENTIFIED PROTESTER: (Speaking Portuguese).
(CROSSTALK)
DANIEL: "We demand an answer," they cried out. In a video Pereira recorded on her phone, the women stand beside their children in wheelchairs, wearing yellow shirts that say, microcephaly is not the end.
PEREIRA: (Through interpreter) If you don't fight, if you don't show yourself up, people think that everything's perfect, and it's not perfect at all.
DANIEL: She says the protest was empowering...
(SOUNDBITE OF ARCHIVED RECORDING)
UNIDENTIFIED PROTESTERS: (Chanting in Portuguese).
PEREIRA: (Speaking Portuguese).
DANIEL: ...And humiliating. People would shout, go back home, get some clothes to wash. But it took just one day. The women got a meeting with the right official who ultimately helped them secure free housing. They were now homeowners.
(SOUNDBITE OF DOOR LATCH UNLOCKING)
DANIEL: Pereira welcomes me to her home outside of Maceio in Eastern Brazil.
PEREIRA: (Through interpreter) I love this apartment. It is mine. I didn't get it from any man. I got it from my own fight.
DANIEL: The place is small but homey - light walls, dark furniture. In the living room, her daughter, Tamara, sits in her wheelchair.
TAMARA: (Vocalizing).
PEREIRA: (Speaking Portuguese).
DANIEL: The 10-year-old isn't verbal, but her big, brown eyes follow the action. Every now and again, she smiles.
PEREIRA: (Through interpreter) So this young lady - she's very cheerful, and she likes to be around people.
TAMARA: (Vocalizing).
DANIEL: Pereira leans over to wipe a trickle of saliva off Tamara's chin.
(SOUNDBITE OF KNOCKING)
DANIEL: There's a gentle knock at the door. It's a friend from the building next door.
PEREIRA: (Speaking Portuguese).
PARKS: Here, Pereira is no longer alone. Her neighbors are the mothers and children she fought alongside to get this housing.
PEREIRA: (Through interpreter) These ladies - they are - I call them my third arm. We are resistance sisters.
DANIEL: And a crucial source of support for Pereira. They've encouraged her to go back to school and helped with Tamara. The result - Pereira's feeling more in control of her life, a life still centered around her daughter.
PEREIRA: (Through interpreter) Before her, I was a extremely selfish person. I had this character of saying live your life. I'll live mine. But now I live for Tamara. My daughter changed my life for good. She opened my heart that is now more sensitive to love and to forgiveness.
DANIEL: Pereira and her sisters of resistance went on to win one more battle. The women ultimately reached an important conclusion that the government should have done more to protect their families from the mosquitoes that carry Zika. The moms said their children were owed reparations. A few months ago, Brazil agreed and will now give each child a one-time payment of about nine grand plus an additional $18,000 a year for the rest of their lives. The bill refers to the payment as compensation for, quote, "moral damage."
(SOUNDBITE OF ARCHIVED RECORDING)
UNIDENTIFIED PERSON #2: (Speaking Portuguese).
DANIEL: Some of the moms were inside the National Congress Palace when the announcement came...
(SOUNDBITE OF ARCHIVED RECORDING)
UNIDENTIFIED PERSON #2: (Speaking Portuguese).
(CHEERING)
DANIEL: ...That the bill had become law. The women put their arms around one another, jumped up and down and cheered.
(SOUNDBITE OF ARCHIVED RECORDING)
UNIDENTIFIED PEOPLE: (Chanting in Portuguese).
DANIEL: For NPR News, I'm Ari Daniel.
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