A biventricular repair for Jayce ’s one-of-a-kind heart

Amanda Mattioli was working in Afghanistan as a government contractor and had just completed a whirlwind round of travel to three separate continents when she learned she was pregnant. The helicopter unit that took her back to the main base so she could return home for her pregnancy gave her a unit sticker to commemorate her baby’s first helicopter ride. Little did she know it would also mark the beginning of a much longer journey for her and her son, William “Jayce” James. Amanda got her first hint the ride would be bumpy at her 20-week ultrasound, when she learned Jayce’s heart was on the right side of his chest, rather than the left side. She was sent to a hospital in nearby Pittsburgh for a level 2 ultrasound, where doctors discovered Jayce had three other major heart defects: complete atrioventricular canal defect (AV canal), transposition of the great arteries (TGA) and pulmonary atresia. Amanda was also referred to a geneticist. The geneticist told her it was very likely he had trisomy 18, a genetic disorder that causes severe birth defects. “She said he probably wouldn’t make it to birth, and if he did, he wouldn’t make it more than a few hours.” Amanda, overwhelmed and upset by the way this news had been delivered, returned to her local doctor and was referred to a private cardiologist in Pittsburgh for a second opinion, Dr. Prapti Kanani, a former cardiology fellow at Boston Children’s Hospital. Finding a b...
Source: Thrive, Children's Hospital Boston - Category: Pediatrics Authors: Tags: Diseases & Conditions Our Patients’ Stories atrioventricular canal Biventricular Repair Biventricular Repair Program Dr. Gerald Marx Dr. Pedro del Nido Heterotaxy syndrome Pulmonary atresia transposition of the great arteries Source Type: news

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