Dustin was born at the Children’s Hospital of Philadelphia in April 2023 after being diagnosed with Hypoplastic Left Heart Syndrome (a condition where the left side of the heart does not grow as expected and requires a series of three surgeries to repair) in utero at his 20-week ultrasound. CHOP truly saved his life as he came into the world limp and lifeless. The first few days were touch and go as he was put in a hypothermic state to preserve brain function, but he was able to get his first surgery at a week old that would buy him more time before needing his first open heart surgery.
The next several months were spent back and forth to CHOP for months at a time as we tried to figure out why Dustin was struggling in almost every aspect of his life: sleeping, eating, and breathing. Dad had to stop working to be able to care for Dustin as well as his big sister Adelyn, who was 3 at the time, while mom continued to work full-time. Dustin was diagnosed with sleep apnea and was put on CPAP overnight, required supplemental oxygen during the day, and had surgery to get a G-J tube placed so we could safely feed him past his stomach to reduce his risk for aspiration. During this time, we also got answers from his genetic testing that put all these different diagnoses together into a bigger picture: a chromosomal deletion referred to as Kleefstra Syndrome.
At the end of October, at just 6 months old, Dustin had his first open heart surgery. It was a very long journey to recovery with several setbacks along the way including a clot in his pulmonary artery. Just as we thought we were on a road to be home for the holidays, Dustin’s health started deteriorating again which resulted in several “code blue” alarms over the course of a week. This effectively pushed up the timeline for his second open heart surgery in January 2024. His recovery was once again long and slow, but he finally came home a week after his first birthday in April 2024!
Since being home, Dustin still has a lot of hurdles to overcome but he is showing us that anything is possible. Despite still being hooked up to a feed pump 20 hours a day, having to sleep with a pesky CPAP mask every night and constantly having to be poked by doctors for follow-ups, he is as happy as can be and is always smiling. He has taken some huge strides developmentally this past year and has started to roll over and even army crawl a few inches to get what he wants. And while he can’t communicate verbally, he finds ways to show us what he wants and is always making us laugh.
We are anticipating that Dustin will need his third open heart surgery later this year which will require our family to relocate to Philadelphia once again so we can be by his side as he recovers. We are so appreciative and honored to be given this opportunity to be sponsored by the Shannon Daley Foundation. This is an absolutely amazing organization!