Tetralogy of Fallot Patient Stories

Serving Up Inspiration: Capucine’s Story

Win or lose, 15-year-old Capucine Jauffret never gives up. Her mom and dad attribute her instinctive determination to a time when she had to fight for her life — a time Capucine won’t remember, and her parents won’t ever forget. When Capucine was born, doctors heard loud murmurs in her heart and diagnosed her with a congenital heart defect called tetralogy of Fallot. At just 17 days old, Capucine had life-saving open heart surgery to repair her heart.

Facing a Rare Heart Condition: Mathew’s Story 

Mathew’s mother, Megan, was 28 weeks pregnant when she learned her baby had Tetralogy of Fallot (TOF), a rare, congenital condition caused by a combination of four heart defects that change the way blood flows through the heart and to the lungs, resulting in less oxygen-rich blood being carried to the body. Mathew would need surgery soon after birth and Megan’s OBGYN referred her to Nemours Children’s Health, Pensacola.

Care for the Smallest Hearts: Easton's Story

Easton was diagnosed at 20 weeks’ gestation with tetralogy of Fallot. I was being seen as a high-risk pregnancy due to advanced maternal age and previous miscarriage. When we discovered the heart condition, we began seeing Nemours [Nemours Children's Cardiac Center] and I was connected with the OB team at Nemours [Advanced Delivery Program] with the plan being to deliver at Nemours with a scheduled C-section at 38 weeks