Every 15 minutes in the United States, a baby is born with a congenital heart defect, making CHDs the most common birth defect in our country. The Congenital Heart Walk is dedicated to making a difference. Our mission is clear - we aim to raise funds to support The Children's Heart Foundation in its quest to advance the diagnosis, treatment, and prevention of CHDs by funding groundbreaking research.
This is only a short glimpse into our 7 year journey with congenital heart defects. At our 20 week ultrasound for our twins we were told something no parent wants to hear, "there is something wrong with your baby's heart". We were later informed one of the twins, Austin, would be born with Hypoplastic Left Heart Syndrome along with other defects. He and his heart healthy twin sister were also born premature. Austin was not a candidate for the life saving surgery we orginally planned for, so at 15 days old he had his first open heart surgery to allow time for him to grow for his needed series of surgeries. This added a 4th surgery to the 3 we orginally planned for. He had a major stomach surgery along with placement of a feeding tube (GJ Tube) at less than 4 months old. He then had another open heart surgery (Norwood) before he was able to come home for the very first time at 151 days old, one day shy of 5 months old. He did not spend much time home before returning for his 3rd open heart surgery, the Glenn. He was able to come home after a few days. His 4th and last planned open heart surgery was when he was 4.5, the Fontan. In between and after the surgeries he's had countless blood draws, scans, tests and heart caths. Austin's next heart cath will be Fall of 2025.
His ongoing battle of congential heart disease will continue for the rest of his life. He will continue to take medications and be seen by his amazing medical care team. This year he will start 2nd grade alongside his twin sister. He is able to live the normal life of a 7 year old. There are things he cannot and will not ever do like things that could cause blunt force trauma to his chest, endurance, etc.
Austin's continuing journey will be better with research and as complications arise in the future the more research and medical advances that are available, the better his outcome will be. Our plan for joining The Children's Heart Foundation is to raise funds for research to eventually find a cure and in the mean time find research to help children live further into adulthood.
