Maria Gabriela Silva Alves will have no party for her second birthday today. No cake. No gifts. No celebration. Gabi, as her parents call her, has congenital Zika syndrome, and her parents simply cannot afford it.
Gabi is one of thousands of children born with congenital Zika syndrome in Brazil over the last two and a half years. I met Gabi and her family while researching the human rights impacts of the Zika epidemic in northeastern Brazil. At 8-months-old, I was struck by how tiny she was, how lovingly her mother held her. Last July, I saw Gabi again when she was a year and a half. I had the joy of holding her several times, and having her nestle into my arms under the loving gaze of her parents, Carol and Joselito.
Her parents were thrust under an intense media spotlight with little government support following her birth. Doctors weren’t sure – still aren’t sure – what Gabi’s life will be like. But her parents have been doggedly seeking services and support. She has a new automated chair that allows her to move around more easily. And, after spending nearly half of Gabi’s life commuting long distances for health care, they now have appointments in their own municipality with transportation provided.
This is not without costs. The family has racked up insurmountable debt caring for Gabi and her older brother, keeping food on the table and a roof over their heads. Though they receive a small financial contribution from the government, there is not enough money to keep their family healthy, much less to celebrate Gabi’s birthday.
Gabi and her family are not alone. Even as the headlines on Zika have faded, children throughout Brazil, and around the world, are growing up with congenital Zika syndrome. No longer babies, they and their caregivers need evolving support. They face difficulties buying expensive medicine, traveling to urban centers for appointments, and keeping paid work because of heavy family responsibilities. Federal and local authorities, and the broader international community, will need to address the special evolving needs of Gabi and children like her concerning their health, but also their education and other still unknown issues.
As Gabi embarks on her third year of life, I wish her and her family good health. And I hope they get the support they need.