Joey’s message of hope: Listen to your heart

Five minutes. That’s how long Joey Williams was expected to live – IF he made it to term, which his doctors were not expecting. His mother, Rebecca Williams, received the  prognosis when she was 21 weeks pregnant. Prenatal testing had already revealed that Joey had Down syndrome and a significant type of congenital heart disease in which one of the sides of his heart was underdeveloped. His diagnoses included atrial septal defect and ventricular septal defect. When Rebecca heard the news of her son’s meager life expectancy, she was devastated. Yet she also felt a well of unconditional love grow deep inside her. “At that point,” she told me, “I really just opened up my heart…I finally felt free to make decisions with my heart.” She and her husband Christopher chose to move forward with the pregnancy and arranged a home birth. “If he was only going to be alive for five minutes, I wanted those moments to be at home,” Rebecca says, her tone equally gentle and firm. On March 12, 2013, Joseph Williams was born. Minutes passed…hours passed… days passed. Although he had defied the odds, Joey ended up in Albany, N.Y-area ER when he was just one week old. There he had emergency surgery, and his parents were told that the only path available was a Fontan procedure to redirect blood flow within the heart.  On an online forum for parents of children with Down syndrome, Rebecca had connected with a mother whose daughter had the same diagnosis as Joey. “She was ...
Source: Thrive, Children's Hospital Boston - Category: Pediatrics Authors: Tags: Heart conditions Our patients’ stories Source Type: news