Our son Evan joined our family through the miracle of adoption at the age of 12 months. He is nineteen now. His birth country is Guatemala. We did not find out about his heart defect until about a month prior to traveling to pick him up. He has Tetralogy of Fallot. When we heard the diagnosis, we were shocked and scared. We shared his medical report with several family practice doctors before we picked him up. Many of them were very discouraging about his prognosis. But, thankfully, we found Dr. Edward Bayne, who was working with University of North Florida Pediatric Cardiology. We sent him the little medical information we had and I’ll forever be grateful to him. He called me at home on a Friday night after reading over Evan’s records and said, “let’s bring that boy home and get him fixed.” That was just the encouragement I needed. Evan had his first repair with open heart surgery at 16 months. At the age of 15, he had his pulmonary valve replaced through open heart. And in the summer of 2019, he had a Melody Valve placed inside the pulmonary valve through a Cath. At the present time, the doctors are watching his pulmonary valve due to scar to tissue to plan for another possible open heart to once again replace the pulmonary valve.
After Evan’s most recent stay at Wolfsons, I discovered THHP. It is so comforting to finally find families who are experiencing some of the same challenges as us.
One thing I have learned with Evan’s CHD is every case is different and every treatment plan is different. But, there are new treatments being studied continuously, so I am hopeful that with that, it lessens the need for as many open heart surgeries leading the way to less invasive repairs to treat the many heart defects our children face. -Sarah, Evans mom