You may have heard the news: Brazil is facing a startling outbreak of microcephaly, a rare condition in which an infant is born with a head much smaller than it should be. Microcephaly almost always causes significant brain damage and can be life threatening. The epidemic has been linked to a simultaneous influx of the mosquito-borne virus Zika, which was first detected in the country last April and is now spreading rapidly around the Americas.
Thriving spoke with Dr. Ganeshwaran Mochida, a pediatric neurologist at Boston Children’s Hospital who specializes in microcephaly, and Dr. Asim Ahmed, an infectious disease researcher at Boston Children’s who specializes in mosquito-borne illnesses, to find out more about the situation and what you can do to keep your family safe. …
Timothy Froio has spent his life plagued by sudden, unwanted jerky movements.
“As a baby, he’d drift off to sleep in my arms and then jump, as if he felt like he was falling,” says his mother, Cheralyn. “He would jump so much that his body would stiffen.”
At age 2, putting together Legos, Tim struggled with violent tic-like movements in his upper torso, arms, legs, neck and head. “He’d jerk and the Legos would come apart and go all over,” says Cheralyn.
The same thing happened with his beverages: they’d spill in his face and all over. Unable to control his movements, he once jabbed himself in the face with a beef teriyaki skewer. His cups had to have lids, and he couldn’t button his buttons or tie his shoes. Cheralyn had to hold him down to cut his nails.
Kids weren’t kind to Timothy, who is now 21 and also has autism spectrum disorder (ASD). Bullies would punch him to make his movements come out. He became very anxious: after the 9/11 attacks, he stopped eating for a week, thinking his food had been poisoned by terrorists.
Like many new mothers, Lyana Guzman Gutierrez was exhausted but overjoyed after giving birth to a healthy and beautiful baby boy. But within two weeks, Lyana, who lived near San Jose, Costa Rica, noticed that Marcel’s eyes and other facial features were not aligned.
Lyana’s mother urged her to bring Marcel to the pediatrician, who referred her to a local radiologist. The specialist diagnosed Marcel with craniosynostosis, a condition in which the fibrous joints or sutures between the plates of the skull fuse too early during a child’s development. This resulted in asymmetry of Marcel’s head which, if left untreated, could lead to further disfiguration, brain and skull growth issues and possible neurological complications.
Through her research, Lyana had already suspected Marcel had craniosynostosis and started exploring her options. Though the neurosurgeon in Costa Rica was willing to treat Marcel, Lyana explains, “My husband and I were looking for the best doctors and the best place in the world to treat Marcel, and we were going to do whatever it took.”
Lyana’s research led her to Boston Children’s Hospital’s website and a video of Mark Proctor, MD, vice chair of neurosurgery. “Something was telling me, you can trust this guy. He’s the one. It was a mother’s instinct.” …
Shortly before Logan Collins was born, a prenatal ultrasound suggested a possible problem with her heart. Her mother, Erika, went into labor the next day, two weeks shy of her due date. Logan was born at just 5 pounds, 5 ounces and had a weak, high-pitched cry that sounded like a cat meowing.
“When I became aware of her birth weight and heard her cry, I had a good idea something was going on, but I didn’t say anything at the time,” Erika says. She suspected Logan had the same disorder as one of her cousins. Chromosomal testing in the Division of Genetics at Boston Children’s Hospital confirmed it: Logan’s fifth chromosome had both a deletion of one piece and a duplication of another. She was diagnosed with Cri du Chat—a rare genetic disorder whose name is French for “cry of the cat.” …