We found out about 20 weeks into our pregnancy that Luke was going to be born with hypoplastic left heart syndrome. Luke was born in Oregon, but the hospitals didn’t have advanced capabilities for heart transplants, so staying in Portland wasn’t really going to be a long-term option. We evaluated the top heart centers across the U.S., and ultimately chose to relocate to Pittsburgh. Moving here was based around the capability of Children’s Hospital of Pittsburgh of UPMC.
Luke’s condition limited him significantly, and he wasn’t able to run or attend school full-day. In fact, when playing t-ball, he had to be carried around the bases because his oxygen levels would drop so quickly. Even playing the backyard with his brothers was a challenge. These low oxygen levels caused occasional seizures, and one of Luke’s seizures caused cardiac arrest, so we were rushed to Children’s and put on the transplant list.
During our time in the hospital, the Child Life department was amazing. The relationship they built with Luke was very important, and they worked to help him endure the challenges in the hospital. The nurses were top flight, phenomenal nurses. We can remember so many of their names and their faces. They were so important during those months in the hospital.
We finally got the call that there was a viable heart, and it was such a rush of emotions. The transplant itself went very well. The surgeons and teams in the cardiac intensive care unit controlled every moment that occurred during that night. Their professionalism and steady hands gave us a level of comfort we desperately needed. It is also very comforting to know that there are dedicated teams to monitor and care for your child through the entire healing process, and specifically their post-transplant team is one of the best in the world. We never questioned that we had chosen the perfect hospital for Luke!
Here we are, over two years later, and it’s amazing. He has fully recovered from his stroke, seizures, numerous surgeries and his transplant. Luke is now excelling in school, and plays baseball, basketball, soccer, and even flag football. He finally can do all of the things that a normal 9-year-old boy should be able to do. He can be the boy that he always wanted to be!