He truly is our Heart Hero! These days, Easton’s ‘zipper’ is the only outward sign of his CHD.
As a child, I was diagnosed with a CHD and underwent open heart surgery to correct an Atrial Septal Defect. At five years old, long before I earned the title “Mommy”, I became a Heart Warrior.
When I found out baby number three was on the way, I was no stranger to the what to expect, what to look for and what not to do. I was familiar with the feelings of excitement, fear, anxiety, wonder, and worry. After a grueling 39 week pregnancy full of bouts of preterm labor, hospital admissions, countless visits to a fetal specialist, and buckets full of reassurance that our baby was “heart healthy”, I gave birth to my third son, Easton Dane. He was pink and happy, with the most pinchable cheeks I’d ever seen. He met his older brothers in the love filled hospital room, but I was grateful for the chance to rest when Easton went off for routine testing.
I slept, but was awoken by a knock. A doctor I didn’t know, with “Pediatric Cardiologist” stitched on his white coat, was at the door. In that moment, I knew our entire world was about to be flipped upside down.
Easton was diagnosed with Tetralogy of Fallot, a rare congenital condition that consists of four separate defects that affect the structure of the heart. News of his diagnosis was devastating and left us in disbelief. We were overwhelmed and searched for answers with question after question. Easton’s brothers and our family had identical reactions. It was a lot to take in and to understand.
Acceptance was the hardest part for us. Easton had developed just like millions of other babies and had no complications leading up to his surgery. He didn’t experience a ‘Tet Spell’. He seemed like any other content and happy infant. The first change we noticed was a week before his scheduled repair, and even then, we thought it was a simple tummy virus making our boy uncomfortable. We had no idea he was actually letting us know that he was indeed ready to undergo open heart surgery.
Our little Heart Warrior underwent a complete and successful repair just shy of 6 months old at Egelston. We were awestruck by his strength and ability to recover from this major surgery. After less than two weeks in the CICU and CSU, he came home. Post-op, we noticed little changes that made a big difference. Easton’s lips were pink and he wasn’t breathing heavily anymore. We’ve never seen him stronger, healthier, or happier. He truly is our Heart Hero!
These days, Easton’s ‘zipper’ is the only outward sign of his CHD. While his pulmonary valve is slightly narrowed, he has no limitations. He sees his cardiologist, Dr. Brandon Harden, once a year for an examination and routine testing. He’s doing well thanks to phenomenal care from his surgeon, cardiologist, pediatrician, and specialists. Sibley has given us a place to belong, where we can relate to so many others who have been, or are in, the same situation. We’re truly thankful for their staff, as well as CHOA’s, and the way they love our son, Easton, as much as we do.
Five years post-surgery, Easton will turn 6 in the spring. He enjoys playing soccer and t-ball, and is excelling in kindergarten. Most afternoons he plays outside with his brothers and rarely allows anything to slow him down. We decided that if we were going to subject him to such traumatic surgery, we were going to let him have the most normal life possible. As parents, we never want to push him further than his capabilities, but we also make sure that he has the opportunity to try everything he is interested in.
We’ve come a long way since the day we received his diagnosis, and we know that ultimately, without our faith in God, we wouldn’t be where we are today. Our family is so grateful for support through the years from our families (taking care of big brothers, fur babies, and sometimes, our entire household), our friends (constant love and prayers), and other heart families (inspiration and support). From here, we can only pray that Easton gets the opportunity to pursue all of his dreams and science continues to advance to support our Heart Warrior and Hero.