When Viviane Lima goes to pick up her two daughters after their first day back at school, she knows she’s going to have to fight with administrators.
The municipal-run public school in Manaus, the capital city of Brazil’s northern state of Amazonas, has yet to give the mother of three a response on when Ana Victória, 16, and Maria Luiza, 14, will be able to work with the educational assistants the law requires the school to provide them. Both of Lima’s oldest daughters have microcephaly, a condition that causes babies to be born with abnormally small heads and potential developmental and physical disabilities. Her youngest daughter, nine-year-old Júlia, was born healthy.
While Ana Victória and Mariza Luiza’s condition is said to have a genetic cause, 4,690 microcephaly cases reported in Brazil between October and February are suspected to be linked to Zika, a virus carried by the Aedes Aegypti mosquito, which also spreads illnesses like dengue and chikungunya.
The usual symptoms of Zika—fever, rash, joint pain, conjunctivitis—are mild and only affect about 20% of people infected. And while the evidence connecting the virus and microcephaly is still circumstantial, it is growing. Of the 4,690 recent microcephaly cases, 583 have been confirmed to have a connection to the virus or other infectious diseases.
No matter the cause, the rising number of babies born with microcephaly in Brazil, which has been accused of underreporting the figures, has set off alarms. Before the numbers started to climb, the country’s Ministry of Health reported 462 cases of the condition since the beginning of 2015; the World Health Organization said that number should be at least 6,000 per year.
Along with this high number of microcephaly cases comes a need for resources for families with children born with the condition. Lima, 35, says her daughters both lead normal lives now—they attend school, play with their younger sister, and participate in family events. But she knows how difficult it can be to discover that your child will be born with a condition you know nothing about and that will weigh on an already tight family budget.
News of mothers of children born with microcephaly being abandoned by the children’s fathers because of the heavy responsibilities and high cost of care has been circulating for months. The epicenter of Zika virus in Brazil is the city of Recife in the country’s historically poor northeast. Many reports say Zika disproportionately affects the poor because the mosquitos that carry it multiply in open water sources, putting neighborhoods without proper plumbing and basic sanitation at higher risk.
Brazil’s federal government does offer financial help to those with disabilities—including those caused by microcephaly—via a benefit from the National Institute of Social Security (INSS) called the BPC. According to the INSS, anyone who is elderly or who has a proven disability is eligible to receive a minimum-wage salary each month, as long as the income of those living in that person’s household is less than 25% of that minimum-wage salary per person. Brazil’s current minimum wage is R$880 per month (US$220), meaning that each person is expected to live on R$220 per month (US$55).
Lima receives the BPC, but only for one daughter because of the income requirements. She says it helps but isn’t nearly enough to care for both Ana Victória and Maria Luiza. Getting the benefit also requires applicants to go through “a lot of bureaucracy,” Lima says.
“It’s a beautiful benefit on paper, a wonderful idea,” says Lima, who describes the program as precarious. “But if the president decides to end the program tomorrow, it’ll be done. So it doesn’t give you a real sense of security.”
(The INSS, for its part, denies that the application process is difficult. “It is not difficult to receive the BPC as long as the basic documentation required for access [to the benefit] is with the applicant,” the institute said in a statement to Coins2Day.)
Even for those who do manage to receive the BPC, more help is needed.
When she was six months pregnant, doctors told Lima that Ana Victória would be born with microcephaly. Lima’s was lucky that her mother was able to pay for private health plans for the girls (she still does). Without that help, the girls would have been cared for in Brazil’s public healthcare system, which is notorious for long wait times, severely overcrowded hospitals, and a lack of funds for proper equipment.
Lima says that a few days can make a world of difference in the care and development of a child with microcephaly. When she first heard about the jump in microcephaly cases in Brazil, she decided to share her story on Facebook. The number of responses she received from mothers going through the same trauma led her to create a group on the chat application Whatsapp where they could support each other and discuss how to better the lives of their children. That one group has now grown to 11, with over 400 women taking part. The majority of those mothers don’t earn enough to pay for private healthcare and have been waiting for months to have their children seen by doctors.
Lima says her next goal is to start an NGO to provide financial help for mothers caring for children with microcephaly. She has already received several messages from Brazilians living overseas who want to send money to help families struggling to take care of children with the condition.
“All I hear is the government talking about mosquitos. But I don’t hear the government talking about solutions. I heard the president say once, ‘we’re going to do everything we can to help these mothers’. But when are they going to help us?” Lima asks.
“It hurts to hear the media talk only about numbers,” she adds. “These aren’t numbers. They are children.”
