Hope for Kevin ’s heart: Five-year-old shines after novel treatment for Ebstein’s anomaly

As the lights dimmed and Pharrell Williams’ “Happy” blasted from loudspeakers, Kevin Nolan III took to the stage for his very first dance recital. Sporting striped pants, a turquoise bow tie and a black top hat, Kevin joined his class in performing two hip-hop jazz routines to a packed house. Kevin’s mood was perfectly in step with the song’s lyrics. “He had so much fun,” says Kevin’s mom, Laura. “He said he can’t wait to get on stage again.” While a first dance recital is a big deal for any 5-year-old, it’s especially poignant for Kevin, who was diagnosed prenatally with Ebstein’s anomaly, a rare heart condition that causes leakage of the tricuspid valve and backup of blood flow into the heart. Kevin also had pulmonary valve regurgitation, which was stealing blood flow away from his essential organs. His condition was so severe that when it was first discovered during a prenatal ultrasound, doctors at a hospital in Boston said he might not survive. “We met with a heart specialist who told us we should just say goodbye,” says Kevin’s dad, Kevin Jr. “He said nothing could be done.” But the expectant parents weren’t ready to give up. They pressed the doctor for a second opinion. Luckily, that doctor referred the Nolans to Dr. Wayne Tworetzky, director of the Boston Children’s Hospital Fetal Cardiology Program. He offered them another option. An experimental treatment offers hope “Dr. Tworetzky suggested an experimental medication I coul...
Source: Thrive, Children's Hospital Boston - Category: Pediatrics Authors: Tags: Diseases & Conditions Our Patients’ Stories Dr. Pedro del Nido Dr. Wayne Tworetsky Ebstein's anomaly Fetal Cardiology Program Source Type: news