We found out about Elliott’s heart at our routine anatomy scan. We rushed to the MFM and found out that he had Hypoplastic Right Heart Syndrome; more specifically Pulmonary Atresia with Intact Ventricular Septum, Hypoplastic Right Ventricle, and Hypoplastic Tricuspid Valve. During pregnancy I was a nervous wreck and researched all outcomes and options. My mom brain and science brain could not reconcile, and we had to surrender to the Lord. Our family truly hoped for the best but prepared for the worst.

Elliott underwent a BTT shunt at 15 days old after multiple attempts to stent his PDA. He gave us quite a scare at the end of this first surgery so even though the surgery was successful we had to wait 48 hours for him to wake up and close his chest before we could be genuinely excited. We were able to go home during the interstage period and returned for his second open heart surgery, the Glenn, at 4 months old. Elliott has been doing wonderful ever since. A few bumps in the road and additional procedures but overall, he is a healthy kid with oxygen saturations in the mid-80s We went to Boston last summer to attempt a 1.5 ventricle repair, but unfortunately, Elliott was not a candidate. We are currently living in La-La land; patiently waiting for his next surgery, the Fontan, next summer. Elliott is doing great and his older brother, Everett, is his best friend! We love our cardiologist, Dr. Thankavel, and surgeon, Dr. Guleserian, and our entire team at Medical City Children’s Hospital.

For any new heart families, my advice is to ask questions. If you do not understand what is happening or if you need more clarification, ask. Please do not be scared to ask questions. As parents, we will never be able to control the situation, but the more you understand what is happening the more you are able to accept and be present for your child.