Ryan Kirst

February 3, 1999, our heart warrior was born.  We were already blessed with a six-year-old daughter and we were excited to add a son to our family. It wasn’t until Ryan was born that we learned he had something seriously wrong with his heart.  He was born blue and right away they knew something was wrong. Ryan was transported to NICU at our local children’s hospital and 3 hours later we learned he had Transposition of the Great Vessels.  We were told he would need to have open-heart surgery in order to survive. We were shocked. I had a normal pregnancy, I had a normal pregnancy with our daughter. I had never even heard of a baby having to have open-heart surgery.  The next 6 days would be the toughest of our family’s lives. Ryan was one very sick baby. He would need to be taken to the cath lab before he was even 12 hours old to have a hole made in his heart to let blood mix so oxygen-rich and oxygen-poor blood could be pumped to the correct side.  He would then be flown to Vanderbilt Children’s hospital. He would then have numerous complications that prevent surgery and finally six days later Ryan was stable enough to undergo surgery. After surgery, other than some feeding problems, he did great and 10 days later we took him home.

When he was 10 months old his pediatrician heard a new murmur and after an echo, it was discovered his aortic and pulmonary valves both leaked. We were told this can be common in TGV and it was a possibility a valve replacement would be in his future.  Despite this, he thrived. Ryan lived a pretty normal life for the next 12 years. He played sports and did everything boys do. When he was 13 his life change, his heart was having to work harder that is should due to the aortic valve leak. This caused his left ventricle to enlarge and caused the aortic root to dilate.  He had to start blood pressure medication and the sport he loved, football, he could no longer play. Later that fall he became very sick, Ryan had developed endocarditis, an infection in his heart and it further damaged his aortic valve. He was on IV antibiotics for 6 weeks and missed 10 weeks of school. His cardiologist watched the valve issue (aortic insufficiency) very closely and we prepared for the inevitable, another surgery.  5 years later at 18, he had an aortic valve replacement. The surgeon made the decision to do an artificial valve due to some complications during surgery and because of this, he is on blood thinners for the rest of his life. Ryan started his senior year of high school 3 1/2 weeks after having his 2nd open-heart surgery. He did great, his heart was working better than it ever had. March of the following year, Ryan and his dad went on a mission trip to Costa Rica. The locals named him “Tic” because when it’s quiet you can hear his valve open and close!

Ryan is almost 21 now, he has restrictions that come with taking a blood thinner. He takes several medications to improve the function of his heart and weekly INR monitoring. He sees an adult congenital heart specialist every 6 months.  Despite all this, he lives a very normal life. He’s in college and wants to be a pastor. He is doing an internship at his church and he works part-time at a coffee shop. He enjoys reading, hiking and being outdoors, coffee, and spending time with his friends and girlfriend. 

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