Maria Carolina Silva Flor and Joselito Alves dos Santos with their 18-month-old daughter, Maria Gabriela Silva Alves. The baby was born with Zika syndrome.
Did the Zika virus put a heavier burden on women than it did on men when the virus swept through Brazil?
A new report by Human Rights Watch argues that the answer is yes. It started with the task of keeping mosquitoes at bay — a task that often fell to the women and girls in a family. And it continues today with women shouldering much of the care for babies born with congenital Zika syndrome, which includes microcephaly, a birth defect characterized by a smaller than normal head and brain damage.
The government has not given women the support they need, says Margaret Wurth, a children's rights researcher who worked on the study.
Wurth and her colleagues visited Brazil in 2016, a year after a state of emergency had been declared (it ended this May). They interviewed women (including mothers of children with microcephaly), men, officials from nongovernmental groups, medical service providers, researchers and others about their experiences related to Zika. They conducted interviews in Pernambuco and Paraíba, two states in northeastern Brazil particularly hard-hit by Zika.
Government officials urged families to keep their homes free of standing water, which could hold mosquito larvae. But when a home does not have reliable running water, it's typically the job of the mother and girls in the family to stockpile water on days the tap is running. And so now they had an additional task — making sure the water containers were properly covered.
"We don't have continuous tap water in the house, so we have to store water in tanks," explains Maria Carolina Silva Flor, 22, of Paraíba. (She goes by Carol and spoke to Goats and Soda through a translator.) "And we always tried to cover it to keep it safe and used repellent."
But that wasn't enough. Many Brazilians live in areas that lack adequate sewage and sanitation. More than 35 million of them have no safe disposal for urine and feces. Sewage systems often become clogged, which leads to standing water where mosquitoes breed.
So with little sanitation infrastructure, even when women and girls made the effort to ward off mosquitoes, that wasn't enough. One 17-year-old mother knew to keep her own home free of standing water but lived only a few steps away from an open channel full of mosquitoes. Her baby was born with Zika syndrome. What's more, she, her partner and her baby all contracted Dengue, another mosquito-borne illness.
The report also says the government did not provide adequate information about family planning — a critical issue because of the birth defects associated with the Zika virus. For example, many pregnant women did not know Zika could be transmitted sexually and did not consistently ask their partner to use condoms. And there was no legal option for terminating a pregnancy because of concerns about Zika: Abortion is generally illegal in Brazil.
The mothers who gave birth to a baby with Zika syndrome are typically the main caregivers for the child, according to the report's findings. But government support is lacking. These babies may need physical therapy as well as special medicine for convulsions, but frequently mothers must travel to other towns to get their children medical care. Because the distances may be long and many women don't have their own cars, some mothers have to quit work or school just to have time to take their babies to the doctor. Twice a week, Carol must take public transportation for an hour to visit doctors' offices nearly 20 miles away to get her daughter the medical services she needs, including physical therapy, speech therapy and nutritional advice. She says her top priority is getting her baby to speak and walk as soon as possible.
According to Carol, the support she wants most from the government is "more offices closer to [her] city" offering medical services for her daughter.
Wurth adds that men and boys should receive more counseling about how to avoid pregnancies and help take care of their children with Zika syndrome.
"This study seems quite new [in its approach] to me," says Léo Heller, a United Nations Special Rapporteur on human rights to safe drinking water and sanitation. Heller was not involved in the study. "Often assessments of disease situations are quite traditional and don't take human rights into account," he explains — in his view, access to clean water is a human right. He notes that the government must invest in infrastructure for sanitation and water and make sure the infrastructure is properly managed.
An additional burden weighs on women who gave birth to a child with Zika syndrome. Says Wurth: "There was a real fear from the mothers that we interviewed that their children would be forgotten."
Natalie Jacewicz is a freelance writer and law school student. Follow her @NatalieJacewicz.