After giving birth to three girls with largely uneventful pregnancies, Alicia was concerned when she and her husband Justin were referred to Sibley Heart Center Cardiology after their 12-week ultrasound of their fourth child, John. They saw pediatric cardiologist Neill Videlefsky, MD, and learned their baby had several serious congenital heart defects.
“It was scary when they told us we needed a heart specialist for a baby not even born yet,” Alicia said. “Dr. V. was really great. He drew pictures explaining what John’s heart defect looked like and what they would do to surgically correct it. He also explained that it was nothing we had done or not done. It just was. The big thing we always wanted to know was what we could expect normal life to be like for him.”
John received the three surgeries necessary to correct his heart defect – the BT shunt, Glenn and Fontan procedures – which were successful. Alicia said the team at Sibley supported her family through a very trying time.
“It’s an awful thing to go through, but you know that everyone there is meant to be there, and they’re amazing and caring,” she said. “John was born just before Halloween, and they let my husband pick out cute shirts for each of the girls. One of his nurses gave John a stuffed dog that still sleeps in his bed. They do their best to make things fun.”
John turned 6 in October, and he attends kindergarten. He loves his sisters, monster trucks, construction vehicles, video games, the beach, Disney World, baseball and going to church and school. Alicia said if people don’t know his story or see his scar, they would never guess what he’s been through as a heart warrior.
“He’s just a normal little boy living his life,” Alicia said. “We live by Dr. V’s advice of not restricting John’s activities, but instead letting him learn his limits.”
She said going through John’s diagnosis brought her community together and showed them how brave and strong he is and their strength as a family.
“He’s an amazing little boy with three amazing sisters, and our family has a deeper bond that other families who have been through this can truly understand and appreciate,” Alicia said.