Kai's Story

Meet Heart Warrior Kai. He was was diagnosed with d-transposition of the great arteries, coarctation of the aorta with hypoplastic arch, and a ventricular septal defect in utero.

"After the diagnosis, we were referred out of state to the nearest Children’s Hospital 2.5 hours from home for further evaluation and care. We relocated when I was 37 weeks pregnant to be closer to where Kai would be delivered. At 39 weeks, I was induced and Kai made his big debut in a room full of nurses and doctors ready to intervene. After a quick snuggle, Kai was taken to the Cardiac Intensive Care Unit where he was started on Prostaglandins the patency of his ductus arteriosis. Within a few hours Kai desaturated and had to resuscitated and intubated. The amazing CICU team was able to keep him stable and give him a chance to adjust to life outside of the womb for a few days before we had to prepare him for his open heart surgery. At four days old Kai went into the CVOR for his full repair. His surgery lasted 10 hours and he was on bypass for 246 minutes. While the team prepared us for the likelihood that he would need to come out of surgery on ECMO, he defied everyone’s expectations and came off of bypass well. Kai’s chest was left open for a few days but was able to be closed sooner than expected. He then spent the next 5 days in the CICU before moving to the cardiac progressive care unit. Kai spent the next three weeks in the progressive care unit healing, working on feeding skills, weaning off of oxygen, and bonding with us. Kai did end up with left vocal cord paralysis from his arch repair and came home on a g-tube for feeding. Despite his difficult start, he continues to progress, grow, and amaze us everyday.

Kai is now 4 months old and is growing and learning and brightening up every room he enters. An in utero diagnosis saved our son’s life and our medical team believes it made all of the difference in his outcomes. Thorough scans are so important and we have learned that 20 week scans are much more than just anatomy scans. We are thankful for the large and supportive heart community and look forward to watching Kai continue to grow." - Bri, Kai's Mom