These Are The Heroes Looking Out For Brazil's Microcephaly Babies

RECIFE, Brazil ― This poverty-stricken city in the country’s northeast is ground zero for the Zika virus, and many mothers here have given birth to babies with microcephaly. As poor and often single women face a disease that can cause severe disabilities in their children, medical professionals and women’s rights activists have rallied to provide them with support and information.

At the AACD physiotherapy unit, Dr. Ana Patrícia treats up to 15 children with microcephaly on any given day. And all the treatment is free for patients.

Patrícia says that the center has seen an uptick in patients with microcephaly since March. One of these patients is 13-month-old José Bernardo Da Silva. His mother, Adriana, travels six hours from her home in Custodia, which is in the countryside of Pernambuco state, one of the poorest in Brazil.

She makes the journey every week to the clinic, where medical staff members assess José to see what long-term care he will need. During this appointment, Patrícia treats his inability to hold up his neck and his poor hand-eye coordination, which is a typical disability for babies born with microcephaly. The therapy she is administering will “help him improve his neck control so he can keep his head up better, interact, continue playing with his mom.”

“We use toys to stimulate him because when he looks at toys, he gets a lot of stimulation and he’s interested in interacting with the toys and the environment,” she says.

When Da Silva, 29, was pregnant with José, she says she contracted both Zika virus and cytomegalovirus, both of which can cause microcephaly in babies. Until doctors figure out what caused her son’s disabilities, it is difficult for them to figure out a long-term and effective treatment plan.

Da Silva doesn’t know yet if José will ever be able to talk or walk.

“For now … it’s not possible to know,” she says. “And we’re waiting for the test results. Doing tests, every week, doing tests.”

Though José’s future is uncertain, Adriana is grateful that he is receiving quality treatment.

In Recife, open sewage pipes, inadequate sanitation and limited garbage management means that mosquitoes, which carry the Zika virus, breed at a high rate. Pregnant women living here have little choice but to put their babies’ health at risk, and until recently, many weren’t even aware of the dangers.

Nadine Gasman, UN Women’s representative to Brazil, says there were 7,500 suspected cases of microcephaly and about 3,400 under investigation in the country through May.

“The millions of women that are pregnant are very anxious and in panic,” she says.

Despite the challenges, Gasman says the state was quick to respond to the crisis, including offering specialized therapy treatment at the AACD clinic. “In other places, other times, it would have taken months for the government to say, ‘Yes, we have a problem.’ I think they were very quick to do that,” she says.

She did, however, warn that with the recent changeover in Brazil’s national government, a “wave of conservative forces” have set back the agenda to improve women’s reproductive rights and access to information, especially in a country with “very low contraception coverage and a very high rate of sexual violence.”

Gasman notes that interim President Michel Temer’s decision in May to strip the agency in charge of women’s rights of its ministerial status, as well as the ministries of race and disabilities, constituted a failure to acknowledge the human impact of the Zika epidemic.

“The persons, which are mainly women, that were affected by this disease and this situation were invisible,” she says. “It’s like the whole country was fighting this mosquito and nobody really cared or took into account what women were going through.”

In response, UN Women partnered with local feminist organizations and health care providers to form a situation group that meets every two months to find ways to address the Zika epidemic by developing maternal health support services.

“[T]he situation group is becoming a place to share information, but also to ask questions and to advocate for women’s rights, all the rights, sexual reproductive rights with policymakers,” Gasman says.

While the group continues engaging with policymakers and government representatives, it is also proactively reaching out to at-risk women through education drives and on-the-ground support services.

A daily podcast called “Viva Maria,” which is distributed to 2,500 radio stations around Brazil and reaches up to 17 million listeners, disseminates information related to gender issues with a focus on reproductive rights.

Podcast host Mara Régia says that since the Zika epidemic hit Brazil and the numbers of babies born with microcephaly increased, she has used her platform to speak to women who could be affected.

One of her biggest concerns is that abortion is still illegal in Brazil, except when a pregnancy is the result of a rape or the mother’s life is in danger. Régia believes that Brazilian women should have a choice to end a pregnancy under any circumstance.

“In Brazil, if there are indications that the child has microcephaly while still in gestation, abortion isn’t an option. This is something that needs to be looked at and addressed,” she says.

While advocating for abortion rights, Régia also gives women practical advice on contraception and methods to prevent contracting the Zika virus.

“There’s also a lot of disinformation and lack of information about the Zika epidemic,” she says. Pointing to the political conservatives in the country and the defunding of critical ministries and sectors, like science, Régia says, “We can expect that investment in the Zika virus is not going to improve.”

Régia says her contribution is to communicate with women and fill in the information gap left by other media and the government. 

She says: “[Viva Maria is] a channel for expression where women have a voice.”