Like many newly married couples, we were over the moon to learn we were expecting our first baby! We vividly remember deciding the entire ride to our ultrasound if we should find out whether we were having a boy or girl. Soon after arriving, we quickly learned that instead of finding out our baby’s gender, they’d take us to a private room to tell us the words that too many families hear, “There is something wrong with your baby’s heart.” They continued to tell us our sweet baby needed a minimum of 2 heart surgeries before celebrating a first birthday. Our baby had a heart defect we could barely pronounce, Tetralogy of Fallot.
In October 2008, our sweet boy Luke was finally here. At one week old, Luke had a heart procedure (BTT Shunt) and spent his first month of life in the hospital. This was a temporary fix until he could have his next surgery. He continued to grow and hit some developmental delays but always achieved them just when we started to be concerned. Luke was the happiest baby and easy going. At 9 months old, Luke had his next heart surgery. His surgery was on Wednesday and by Saturday afternoon, we were home. We could not believe how amazingly well he recovered. For over 4 years Luke grow as a “normal” kid with regular visits to the cardiologist every 6-12 months. Over the years, we met heart families from volunteering with our local hospitals and often felt guilty of how well Luke thrived. We even had some guilt that other families struggled with unexpected surgeries, months of being in the hospital and even the loss of CHD warriors. Our family still tried to do our part in working with our Illinois hospitals to connect with other heart families and supporting them in their time of need.
In September 2013, Luke was admitted to the hospital with a stomach bug. Over the next few days, Luke’s health seems to be a roller coaster ride with ups and downs. The medical team couldn’t figure out why his health continued to go back and forth. The medical team determined it was best to intubate Luke until they figured out why his health was declining. As he was being intubated, Luke coded. Just like in the movies or tv shows, more staff ran in to help. It was really surreal to know that this was happening to our child.
After Luke was stable, more echoes and CT of the heart were done. It was finally discovered his left pulmonary artery was absent and was not supplying enough to his left lung. This was the missing piece to the puzzle. When the team was hydrating Luke during his admission, they were giving him enough fluids for two functioning lungs. After realizing this very rare condition, the team was able to care for Luke and get him on the road to recovery after a few more weeks in the hospital. Since then, Luke has been running on one fully functioning lung and will continue to do so hopefully into old age. Today, we don’t foresee any surgeries for Luke and continue to see the cardiologist yearly and catheterization as needed.
Since that day, Luke’s unexpected case has been in research studies to help others. Luke has been the greatest blessing to our family, and we continue to be thankful for every day and all the little things in life! We share Luke’s journey in hopes of helping other CHD families and spreading much needed CHD awareness! Thanks to the Conquering CHD, we have helped to build a local community of resources and support working with our Illinois hospitals. We’ve had the honor of attending Conquering CHD’s Advocacy Conference where we shared Luke’s heart story in Washington D.C. Luke’s is just one of many amazing stories in the heart community. Together, we continue to Conquer CHD when we unite our stories to make a difference!