RACHEL MARTIN, HOST:
Three years ago, the Zika epidemic swept across Brazil. As a result, thousands of babies were born with microcephaly, or abnormally small heads, among other impairments that come with that. Around the same time, BBC producer William Kremer had a child of his own who was also born with microcephaly, although not because of Zika.
Kremer wanted to know how Brazil's so-called Zika babies were developing, so we went there and produced a radio documentary called "Zika Love Stories." Among the people he met there were Germana Soares. She's the head of a support group for parents called the United Mothers of Angels.
(SOUNDBITE OF DOCUMENTARY, "ZIKA LOVE STORIES")
GERMANA SOARES: (Through interpreter) Being part of UMA gave us two options - either be a victim and don't do anything, or become a protagonist in the lives of these kids.
MARTIN: I talked with William Kremer about his reporting earlier this week. Can you introduce us to the women you met? So you go to Brazil to try to follow up on the children who were born out of the Zika crisis, and you meet this network of mothers.
WILLIAM KREMER: Yeah, that's right. I mean, it was quite remarkable because they are overwhelmingly from very poor backgrounds, uneducated, many of them very young as well, mothers. So they did have a hard time coping with what happened. But they certainly didn't come across as victims to me when I went over there.
They were very, very big. You know, they were a very tight group, lots of solidarity, very determined women. Some of them were engaged in, you know, political campaigning. They certainly didn't take any nonsense from us. There was a degree of skepticism towards the press because they feel like the press was involved in their lives and then kind of just forgot about them. They are pretty skeptical about doctors as well, which is kind of common for special-needs parents. So they were quite a strong set of women. I mean, obviously, very different.
The leader of this group, which is called the United Mothers of Angels - this is a group in Pernambuco state, which is a sort of - it's one of the states which was worst affected by Zika. The leader of that group is called Germana Soares, and she is, you know, really quite a powerful personality. She doesn't mince her words. You know, she's one of these people that could just give you a look, and you sort of just stop talking. But also very charming. And, you know, she's made a lot of friends with politicians, sympathetic MPs, got people on her side to try and campaign for the women.
MARTIN: What is the health status of these children who were born with Zika? I mean, you write that in the beginning, these mothers were getting a horrible prognosis that their children may not even survive beyond a year. So how are they doing?
KREMER: Well, that's right. So around 10 percent of them have died. Most of those - so that's about 320 children. Most of those children probably died very soon after birth. A few of them got things like chest infections through breathing food in when they were learning to wean.
But on the other hand, there are children who are actually doing pretty well. I mean, this is actually - this is one of the things that fascinated me the most was that they were a very mixed group of children. So there are some children who can walk, can stand. There are some children who've got words and can talk - still maybe a little bit behind kind of their peers, you know, at that age.
But then there are other children who, you know - they can't roll over. They're fed through a tube into their tummy. They're much, much more, you know, disabled. Some of the children who are more physically disabled are actually cognitively less so. And some of the children who are more cognitively disabled can actually stand up and walk around. It's an incredibly mixed thing.
MARTIN: So much so that you actually tell the story of twins.
KREMER: Yeah.
MARTIN: A girl who was born with the Zika virus, and her brother did not - was not affected.
KREMER: Yeah. It was - you had this fragile little girl - Melissa Vitoria, she was called - who really couldn't move very much at all. She seemed very aware of what was going on around her. But then she had her twin brother, who was 2 1/2, and he was acting just like you would expect a 2 1/2-year-old boy to act - jumping up and down and climbing on his mom and all this kind of thing.
So they don't really understand. They didn't know why it affected one twin and not another. It's quite possible that it was because of genetic differences between them, so they now know that some people seem to have a sort of genetic defense against Zika.
MARTIN: You write that Zika-affected families are at a turning point. Why is this an important moment in their story?
KREMER: What I saw is that the families are really thinking about the social aspects of what their lives are going to be like. Like, what school are they going to go to, you know? And how will they be able to access a school? Will moms be able to go back and work again? What are they going to do about child care?
And so we were able to join the activist Germana Soares as she went around some of the more deprived parts of northern Brazil. And she was kind of giving talks to these women and giving them pep talks and sort of saying, you know, you need to write to the man. You need to write to the health secretary. Tell him to give you a bus to take your child to school. You know, this kind of thing. And those are the kind of social campaigning type of issues that they're really starting to deal with now.
MARTIN: I wonder, because you have this personal connection because your own daughter has microcephaly, how did you come back from this trip? Did it change or alter the way you think about her condition in any way?
KREMER: The children were very - some of the children - the little girl you mentioned, Melissa, the twin, she, especially, was very similar to my little girl. She reminded me so much of my little girl a year ago. And holding her was just like holding my little girl. And her mom was at that point where I was kind of 18 months ago, where I was kind of despairing.
And in that 18 months, Katy, my daughter, has done so much. And I really wanted to say to Cassiana, look; she's going to - don't worry. She'll come - you know. But you can't, you know? You just don't know. Every child's different. But I just felt they were very - like, kind of sisters almost, you know?
MARTIN: The piece is called "Zika Love Stories." It's on the BBC website, and it was written by William Kremer. William, thank you so much for talking with us.
KREMER: Thank you. Thanks a lot.
(SOUNDBITE OF MUSIC) Transcript provided by NPR, Copyright NPR.
