ON 13 JANUARY, in Recife, a coastal city in north-eastern Brazil, 35-year-old Carol Calabria threw a big party for the birthday of her one-year-old daughter, Lis. She rented out a space in a chic district, decorated it with balloons, invited many children and their mothers, and even hired a professional photographer.
But the birthday girl did not enjoy the day as Carol hoped she would. Throughout the party, Lis was nervous and agitated, as were many of the other children in attendance. One reason for their discomfort was that they have microcephaly—abnormally small heads and associated neurological defects, such as intellectual disability and poor motor function. The children were all born to women who had been infected with Zika: a mosquito-borne virus that can cause pregnant women to give birth to babies with microcephaly.
Recife, the capital of Pernambuco state, is the epicentre of Brazil’s Zika epidemic, which has rocked the country over the past two years. Between 2000 and 2014, the number of live births of microcephalic babies in Brazil was stable, at an average of 164 per year. But in 2015 alone, there were 1,608 such births registered nationwide. In Pernambuco alone, from August 2015 through July 2016, there were 376.
In early 2016, the World Health Organisation declared the Zika epidemic in Brazil to be “a public health emergency of international concern,” especially given that the 2016 Summer Olympic Games were to take place in Rio de Janeiro. A couple of months after the Olympics ended, however, and the accompanying media attention dropped away, the WHO declared the emergency over, leaving Brazil alone in its fight against the crisis. This May, Brazil itself declared an end to the Zika public-health emergency, though its effects still linger for people like the Calabrias.
This January, Mirko Cecchi, a documentary photographer, and I, a reporter, travelled in Pernambuco to work on Behind Zika Virus, a collaborative piece of written and photographic journalism about the effects of Zika in Brazil. We spent three weeks in and around Recife, speaking to people directly affected by Zika, including many mothers of children with microcephaly. We wanted to understand how these women deal with their hardships in a country where public healthcare is often inadequate, and where mothers are often expected to singlehandedly raise their children.
Carol knew she had been infected with Zika by the third month of her pregnancy, but she only learnt that her daughter would have serious problems when she was 38 weeks along. Still, she was happy she had not heard the information sooner. If she had, she said, “I would not have had an abortion, but I would have spent months in stress and anxiety.” Carol lives with her parents and her husband in a large house on the outskirts of Recife. The family’s comfortable finances mean that Carol has access to high-quality, specialised treatment for her daughter. The Calabrias have also hired a young nanny to help Carol care for Lis. After Lis was born, Carol said, the thing that helped her the most was to “go out and talk about something else that was not my daughter’s illness.” Now, she added, “I can say that my life has not changed much.”
Just a few blocks away from the Calabrias, however, lives a family with a very different story. Soraia Silva, at 34 years old, is the mother of Leonardo Gabriel, who was born with microcephaly in August 2015. While Carol, affluent and white, is somewhat of an anomaly among mothers of Zika-affected children, Soraia—a poor, black single mother—is closer to typical. Soraia lives in a small room without a finished floor, and she does not have a job. “The neighbours do not help me or greet me. I’m alone—we are alone, Leonardo Gabriel and I,” she said.
Soraia cannot afford private healthcare, and must rely on the public health system, as well as on donations she has collected through online crowdfunding. Every day, before the sun rises, she carries Leonardo Gabriel, who cannot walk, in a sling on her back to a state-run hospital. She arrives early to ensure a good spot in the long queue for treatment. Many other mothers make even longer journeys, bringing their children from the surrounding rural areas.
The mothers of children with microcephaly are often left to bear their parental burden alone. Olindo Barbosa de Morais Filho, who directs the maternity ward of a hospital in Recife, said, “Our culture is heavily male-dominated, patriarchal and influenced by the Catholic religion … which continues to repeat that women are born to suffer.” Barbosa had lost count of the number of cases he had seen in which a pregnant woman was abandoned by her partner after learning that their child had a Zika-related illness.
A few days after Leonardo Gabriel’s birth, Soraia’s partner did that very thing. “He yelled, ‘Choose: me or the devil!’” she recounted sadly. “And I chose my little angel.”
[embed]https://issuu.com/thecaravanindia/docs/carried_alone_caravan_magazine_augu[/embed]
This essay is part of The Caravan’s short series on Zika. The series includes a reporton why the Indian media’s response to the emergence of Zika in the country fell short, and an extract that discusses two ways to examine an epidemic.