Advice From Sean and Lani: Participate, Expect the Unexpected, and Practice Self-Care

Sean and Lani are the parents to Nina, an incredible five-year-old heart warrior with a single ventricle heart, hypoplastic right heart syndrome (HRHS), pulmonary atresia, tricuspid atresia, and MAPCAs. Nina has undergone the Norwood procedure/BT shunt at 8 days old, unifocalization for MAPCAs and shunt upsize at 6 months, Glenn shunt at 21 months, and Fontan at 4.5 years.

Watch for our next post with Nina!

Addie

I never really know how to explain Addie’s diagnosis to people. Just like Eloise, it’s complicated, random, and rare. Addie has left atrial isomerism heterotaxy. We first heard the words “your baby will need open heart surgery” when I was about 16 weeks pregnant. Doctors said, “One surgery and she will be done”, and “Less than a 1% chance it’s anything else.” While painting Addie’s nursery dresser and imagining each drawer filled with sweet outfits for our little girl, I got the call. It was one that made me lose my breath and feel faint. Our baby girl had heterotaxy and there were many defects in her heart. Josh, my husband, came home from work and we talked about heterotaxy and wrestled to understand that our baby would be enduring a life-long struggle. It wasn’t until after Addie was born that we knew the full extent of her defects which include: single left-sided SVC, interrupted IVC with hemiazygos continuation, separate hepatic veins, unbalanced atrioventricular septal defect, left ventricular outflow tract obstruction, hypoplastic aortic arch/ coarctation, and severe atrioventricular valve regurgitation.

The cardiologist had prepared us for the terrible possibility of having only a couple days with our sweet girl. As I struggled to understand the implications of these terms, I set goals in my mind for a few things I hoped to do with her if we only had a short time together. The main thing on my mind was to sing her “Happy Birthday”, so in the delivery room with our friends and family around we sang “Happy Birthday”.  Another was to brush her hair and luckily she was born with lots! I cherish that little comb 15 months after I first used it. It was the mother-daughter moment I had been hoping for. We have been so lucky with all the time and wonderful moments shared with Addie. Two open-heart surgeries and several procedures later, our daughter is an active, bright, happy toddler.