After a typical pregnancy and uneventful delivery, Holly and Dan didn’t expect to be doing anything other than enjoying the birth of their second daughter with their family. But just hours after Annabelle’s birth, they discovered she had a rare congenital heart defect called Transposition of the Great Arteries with Ventricular Septal Defect (VSD). Children’s Healthcare of Atlanta Cardiology pediatric cardiologist, Wesley Blackwood, MD, diagnosed baby Annabelle in Macon and arranged her transport to Atlanta, where she would undergo open heart surgery at just four days old. And Annabelle’s parents were set on a new path of learning as much as they could about her CHD.
Holly said she and her husband knew very little about CHDs, and they immediately began to educate themselves, join online groups and reach out to other heart families. They learned that CHDs are much more common than they realized, with one in 100 babies born with one. Holly said she encourages other families to learn as much as they can about the conditions their heart warriors have.
“I found it helpful to understand the problem, the surgery to fix it and future prognosis,” Holly said. “We met people while at CHOA in the CICU and connected via social media. I also joined support groups, and it was helpful to know there are many other children with conditions like Annabelle’s. The vast majority of these children will thrive, and it was encouraging to hear from parents with kids older than mine and hear success stories.”
Annabelle, now 8, is a typical little girl who loves to dress up, dance and do arts and crafts, according to her mom. She is a dedicated student and recently won the award for highest overall grade for her first-grade class. Holly said Annabelle has an impressive imagination and creates all kinds of fun games and can play for hours independently with her dolls and toys. She loves to play outside, tumble and play tennis.
“Annabelle is vibrant and unique and mature and wise beyond her years,” Holly said. “She has never really asked about her scars but recently started asking, and she feels empowered to know what she went through and survived at such a young age.”
After taking some time off during COVID, Holly decided to go back to work this year. She found a position as a physician liaison with Children’s Cardiology and now works with Dr. Blackwood’s office covering service areas in middle and south Georgia. She helps educate local pediatricians – some who may not have a specialist within 60 miles of their offices – about making referrals to the excellent physicians at Children’s. Holly said she’s honored to meet and work with parents in the community and share the unique perspective she’s gained as a CHD parent. “I would tell other parents of heart kids to stay positive,” Holly said. “They are incredibly resilient, and there is certainly sunshine down the road even in the darkest moments. These kids are fighters, and their future is bright.”