Zika Twins: A Window Into Much More Than a Virus – New York Times

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I did not anticipate the situation of João Lucas and Ana Vitória da Silva Araújo, twins whose different fates had overwhelmed their mother and caused the brain-damaged twin, João Lucas, to be placed with a guardian. These twins, more than a year old when I met them, became a window into much more than the Zika virus. Their story reflects struggles with poverty and lack of education; health care resources so scarce that people have to travel long distances just to get basic, low-tech services; the need for friends and acquaintances to take on ad hoc roles as substitute caregivers for children in crisis.

Together with Tania Franco, who served as a translator and fixer; Adriana Zehbrauskas, a photographer; and Gleidson Marcos, a driver who also made sure we were safe, I followed João Lucas and his guardian, Valéria Gomes Ribeiro, as they went from one appointment to another in the city of Recife.

Ms. Ribeiro, who was already a guardian for a teenager with developmental disabilities and had taken in an aunt with dementia, had stepped in to care for João Lucas. She is a cousin of a neighbor of his biological mother, Neide Maria Ferreira da Silva, who had given birth to 10 children before having the twins and proved unable to handle such an impaired baby.

João Lucas suffered serious symptoms: seizures, breathing difficulties, trouble with muscles and joints. He could not sit up or support his head on his own, and he had to wear leg braces even though he couldn’t crawl let alone walk. His medication sometimes made him so groggy he barely seemed to notice when a therapist at one clinic tried to stimulate his sense of touch by brushing his shoulders, back and arms with sponges. Yet at the next clinic he failed to stay still for a hearing test, so Ms. Ribeiro stood and rocked him repeatedly, despite her own fatigue.

We rode three buses with them for the two-hour journey from Recife back to Ms. Ribeiro’s house in Paulista, during which João Lucas drooled on the bright green tape that therapists had placed around his lips that morning to try to strengthen his mouth muscles.

When we arrived in Paulista, an exhausted Ms. Ribeiro took João Lucas inside her modest green house, placed him on a pillow on a sofa, slipped off her shoes and went outside to smoke a cigarette. From her front door, I surveyed the dirt streets rutted with muddy water, an upturned wagon languishing in the road. Ms. Ribeiro has had to forgo the extra money she once earned selling soda and candy on her small porch since it was converted into a makeshift bedroom for her ailing aunt.

Photo

João Lucas, left, drowsed on his back. Ana Vitória, between reaching over and grabbing his burp cloth and pacifier, played with a large stuffed whale.

Credit
Pam Belluck/The New York Times

We did not know if we would get to see the healthy twin, but suddenly Ms. da Silva showed up with Ana Vitória, who walked around in sandals and a yellow romper — alert, mischievous, affectionate. The women placed her on a bed next to João Lucas, so the twins could spend time together, and left the room. I stayed behind to observe, quietly taking photos and video on my cellphone. Although their bodies were the same size, I felt as if I were watching a newborn and his toddler sister.

João Lucas drowsed on his back, the green tape stretched on the backs of his fingers to unclench his fists giving his hands a skeletal look. Ana Vitória, between reaching over and grabbing his burp cloth and pacifier, played with a large stuffed whale. She opened and closed her hands, made eye contact, smiled — inadvertently demonstrating every skill her twin could not muster.

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