Carter's Annual Heart Walk Page

Carter, was born with Tetralogy of Fallot on April 19th 2009. Tetralogy of Fallot involves four congenital heart defects. This is a problem with the heart's structure that is present at birth. Congenital heart defects change the normal flow of blood through the heart. Lindsey, found out when she was at 20 weeks that he had a heart defect. We made many trips down to Iowa City before his birth to make sure everything was going to run as smoothly as possible. Carter had his first surgery on May 1st, 2009 (2 weeks old). He had a temporary shunt inserted that goes from his aorta to his pulmonary artery. This allowed him to get enough blood flow throughout his body until his total repair in 4-5 months. Lindsey stayed in the hospital with Carter for the first month after birth and throughout his first surgery in the NICU. Carter's second surgery was on September 17th, 2009 (5 months old). The surgeons removed the temporary shunt that was placed in the first surgery. They patched his VSD (Ventricle Septal Defect, hole in his heart) by taking some tissue from his aorta. They also scraped away the built up tissue around his artery to try to increase blood flow. This was a 6 hour surgery. Carter's third surgery on October 1st, 2013 (4 years old) was to place a shunt to increase blood flow through his heart. He was becoming tired more often and beginning to turn blue at times. Unfortunately, due to his age at the time of this surgery, doctors were unable to insert a Melody Valve. The Melody Valve would be used to open and widen his artery, which would not require any additional open heart surgeries. Carter also had a pacemaker placed in his tummy to help regulate his heart rate and increase his heart rate with activity. Without the pacemaker Carter really struggled to get his heart rate increased on his own with activity which made him more tired faster than the other kiddos. The shunt that was placed would hopefully last us until Carter is big enough to have the Melody Valve placed. Carter recovered very well after this surgery and went along playing with friends at school with some limitations. On October 19th, 2016 (7 years old) Carter had his first procedure in the Cath Lab to replace his valve with a Melody Valve, which was a 4 hour procedure. This was decided due to his stress test, echo, and EKG results in his previous appointment. Going into the procedure on October 19th we did not know if Carter would be big enough to have this valve replacement done in the Cath Lab yet due to his age and size. We were aware that there was a chance that it would not work and then we would have to schedule open heart surgery to have the valve replaced. Thankfully everything went as planned and Carter got his Melody valve that day in the Cath Lab without another open heart surgery. Carter quickly recovered from this and returned to school with only missing a few days! On March 18th, 2020 (10 years old) Carter had his pacemaker removed from his tummy and a new one placed above his heart, he was able to have this procedure done in the Cath Lab. This took place during the pandemic so many restrictions were in place and limitations on who could attend his visits and no visitors allowed during his hospital stay or during the procedure. His arterial lead/wire was not functioning which was about 7yrs old. They left the old wires due to the scar tissue around them. We opted to put in an extra wire right away in case we need it in the future, so he will have one placed thru the top artery and bottom artery of his heart. These wires are actually screwed inside of his heart not exterior like the previous. He came home in a sling and wasn’t able to lift over his head for a few weeks. He now has a 15 year battery life on his pacemaker and will still continue to take his Aspirin and Losartan daily. Carter is back to just going to Iowa City for checkups every 6 months and doing very well. With this move Carter is now able to explore the possibility of trying out some sports that he hasn’t been able to do thus far. The American Heart Association has brought us all closer together as a family. It has helped make us aware of all of the other issues affecting other families/lives and has brought many new hopes to our lives and made us believe that miracles do happen! Thanks to the American Heart Association funded research, we have a greater understanding of congenital heart defects. When we wake up each morning, there is no better feeling than knowing Carter has a bright future ahead of him. It’s our hope that no other parent experiences the devastating news of hearing that their child has a heart condition. Kids like Carter get to smile and laugh tomorrow because of what this organization is doing to fund medical advancements and research today! Our team is participating in the American Heart Association’s Heart Walk to promote physical activity to build healthier lives, free of cardiovascular diseases and stroke. Please join our team and help us meet our goal.