STEVE INSKEEP, HOST:
In Brazil, the first babies born with Zika-related microcephaly are turning 1. It's been a long, hard road for their parents and for Brazilian researchers trying to uncover Zika's secrets. NPR's Lulu Garcia-Navarro reports from Rio de Janeiro.
FABIANE LOPES: (Speaking Portuguese).
LOURDES GARCIA-NAVARRO: Fabiane Lopes is talking with her doctor at a local hospital about a prescription for her daughter, Valentina. At 11 months old and born with Zika-related microcephaly, Valentina suffers from severe seizures. And she has to take a range of medication. She also has had an operation to help her digestion. Her legs are twisted, so she has mobility issues among a range of other developmental problems. Little Valentina's short life has mostly been spent in hospitals like this one.
(SOUNDBITE OF BABY CRYING)
GARCIA-NAVARRO: I sit down with Fabiane after the appointment outside in the waiting room, where many more fretful babies with microcephaly and their parents were waiting to be seen.
LOPES: (Speaking Portuguese).
GARCIA-NAVARRO: So first, some background. I first met Fabiane when Valentina had just been born. She's a single mother whose partner left her once he found out she was pregnant with a child who would probably have developmental issues. Back then, Zika was getting a lot of attention here. And those who were affected were given a lot of promises. Now...
LOPES: (Through interpreter) We don't have any support - nothing. We don't have psychological support for the parents that struggle, and we don't have support for our children who don't get the care they need.
GARCIA-NAVARRO: At the beginning, Fabiane was full of a fierce kind of hope. The government had promised medical and financial help to all the children who had been born with Zika-related conditions and their families. Fabiane says, though, those promises quickly evaporated.
LOPES: (Through interpreter) I go knock on one door. It closes. I go to another. It also closes. It's so hard. We feel so desperate, lost. And it hurts.
GARCIA-NAVARRO: Other mothers contacted by NPR told similar stories. Fabiane says today, she paid for her own bus fare to get to the hospital. And she can't afford to buy food while she waits all day to be seen.
LOPES: (Through interpreter) Zika arrived like a bomb, yes, that grabbed the world's attention. But now all that has stopped.
(APPLAUSE)
UNIDENTIFIED WOMAN: (Speaking Portuguese).
GARCIA-NAVARRO: At the same time Fabiane was at the hospital, across town in Rio, experts were gathered at a conference focused on Zika. I caught up there with Adriana Melo, from Brazil's northeast, who was one of the first doctors to make the link between the surge of microcephaly and Zika.
ADRIANA MELO: (Speaking Portuguese).
GARCIA-NAVARRO: She tells me, "for us in Brazil, Zika arrived at the worst possible time, with an economic crisis and a political one." She acknowledged that the situation for parents with microcephalic children is urgent, with many not getting the help they were promised. But even scientists are struggling in Brazil these days.
MELO: (Speaking Portuguese).
GARCIA-NAVARRO: She says her group has been looking for funding for a study since last year, and so far, nothing. She even went to the international community, but the world seems to no longer be worried about Zika in Brazil, she says. She says it's a problem because there's still so many things that need to be discovered. How serious is sexual transmission with Zika? Will the Zika virus mutate?
MELO: (Speaking Portuguese).
GARCIA-NAVARRO: She says one of the big remaining mysteries is why northeastern Brazil saw such a huge spike in microcephaly that hasn't been repeated on that scale elsewhere. She says they need to study if genetics or immunity or environmental factors played a role. Roberto Medronho is the director of the medical school at Rio Federal university, and he was also at the conference.
He says he doesn't see the issue of funding for families being resolved any time soon. And he says the situation is indeed dire. He has joined the raging debate in Brazil over access to abortion for mothers whose fetuses have been severely damaged by Zika. And he says termination should be allowed. But he says even in the unlikely event that abortion is permitted, it won't help those struggling to cope now.
ROBERTO MEDRONHO: (Speaking Portuguese).
GARCIA-NAVARRO: "We've never seen a microcephaly so serious and devastating as that with Zika. Those children will be dependent for the rest of their lives. Many will not have an acceptable quality of life." He says, "for Brazil, this is an ongoing tragedy." Lulu Garcia-Navarro, NPR News, Rio de Janeiro. Transcript provided by NPR, Copyright NPR.
