At 16 months old, Avery was diagnosed with an atrial septal defect — a hole in the wall between the heart’s upper chambers that required open-heart surgery to repair.
Shock, fear and pride were just a few of the emotions Avery’s parents Jessica and Andrew experienced throughout their journey coping with their daughter’s congenital heart defect (CHD).
The couple found it helpful to talk through their questions and feelings with other parents of children with a CHD, as well as with Avery’s caregivers from the Heart Center at Boston Children’s Hospital. Now with two years of recovery behind them, Jessica and Andrew generously pay it forward by sharing their experience and offering guidance to other families coping with pediatric heart disease.
One in 100 babies is born with some form of congenital heart defect (CHD). Sometimes the issue is minor and doesn’t cause serious problems. Other times, the heart can’t function properly and needs immediate, invasive surgery. As kids with CHD grow up, they learn their condition will follow them for life and need continued attention. Every CHD heart is unique, but some experiences are universal, and kids and families can help support one another through challenging times.
The Heart Experience Journal, created by the Department of Psychiatry and the Heart Center, represents the “collective wisdom” of patients and families coping with pediatric heart disease. The following excerpts were taken from conversations with patients and families during their child’s inpatient stay for a heart-related issue. Read more first-hand advice from families at the Experience Journals. …
Well into his teenage years, Greek army lieutenant Thodoris (Ted) Sarafis thought the scar on his chest was the result of an unfortunate tumble he took as a child.
“My parents told me I had an accident, and that’s where I got my scar,” he says. Sarafis didn’t learn he’d had heart surgery as a toddler until his medical clearance exam for the Greek national karate team at age 16.
Ted took the news in stride, but last year, curiosity got the better of him, and he pressed his father for more information.
That’s when he found out exactly where he’d had his life-saving surgery (the Boston Children’s Hospital Heart Center) and who performed that procedure (Dr. Aldo Casteneda, who now lives and works in Guatemala). Ted then learned more about the details of his diagnosis and the extraordinary measures his parents took in 1984 to save his life.