When Renee and Jonathan found at 20 weeks pregnant that there was something wrong with their baby’s heart, they knew the pregnancy and the life of their third child was going to be very different. That was when he was diagnosed with Hypoplastic Left Heart Syndrome (HLHS), and the family entered the heart warrior world of CHDs.
HLHS is a birth defect that affects normal blood flow through the heart in which the left side has formed incorrectly. Benjamin had his first open heart surgery at 6 days old – the Norwood procedure – followed by the Glenn and Fontan at 7 months and 4 years old. Benjamin has also had other surgeries and procedures that have kept him in the hospital for weeks at a time. Although it’s been hard, none of it has taken away his enthusiasm for life, his family and friends – and sports. Renee and Jonathan have found great comfort in their connections as well.
“My husband and I make a good team,” Renee said. “Our parents are close by, and we have amazing friends who would instantly step in to help with anything we need. We’ve had people reach out who’ve been where we are, and I’ve connected with other Georgia heart moms who I can share information with and ask for advice. It’s been hard and lonely, but I would not say alone.”
Benjamin is now in second grade, and his brother Jeremiah and sister Marley are in fourth and seventh grades. He loves any kind of sports and finished his first baseball season in the fall. He also loves “Dude Perfect,” riding his bike, jumping on the trampoline and playing at the park.
“You would never know about his heart to see him outside running and playing,” Renee said. “It’s hard for him sometimes when he’s in the hospital or not feeling well, but we tell him you are exactly who you’re created to be.”
Renee said the journey has made her family place value on different things, and they appreciate being together and making memories. This holiday season, they’ll enjoy spending time with extended family, looking at the lights and getting a visit from their two Christmas elves. (One came to visit Benjamin in the hospital last year!)
“I would tell other heart moms to give themselves grace,” Renee said. “It will become more normal. Not everyone will understand but search for those who do and will support you. We strive to the best we can for our kids and let Benjamin live as normal a life as possible. This is part of who he is, but it’s not all of who he is. He is truly our miracle child.”
Benjamin sees Dr. Neill Videlefsky at our Lawrenceville clinic.
For more information about Children’s Healthcare of Atlanta Cardiology and our pediatric cardiology specialists, click here.