Born with a unilateral cleft lip and palate, Dylan’s journey has been marked by numerous surgeries and dedicated medical care. But it’s also a story of staying positive and forming lasting connections.
A cleft of the lip or palate happens when a baby is born with an opening in the upper lip or the roof of the mouth (the palate). A cleft happens when parts of the lip and/or palate do not fuse together completely. For Dylan, this diagnosis has always been a part of his life. “I can’t really remember much from before then,” he reflects. “I always had the cleft lip and palate, and as a child, I thought it was normal. Every kid went through it.”
When Dylan was around 5 years old, his family moved from California to Delaware. This relocation marked the beginning of his long-term relationship with Nemours Children’s Hospital, Delaware. “My mother had to find a hospital to help with my condition, and that’s when we started seeing Nemours,” Dylan shares. Upon arriving at Nemours Children’s, he was introduced to a team of specialists who would play a crucial role in his journey. Dr. Caterson was one of the key figures who provided him with comprehensive care. The Nemours experts not only focused on the physical aspects of his condition but also recognized the importance of psychological and social support. The multidisciplinary approach at Nemours ensured that Dylan received well-rounded care, addressing both his medical needs and his emotional well-being.
His earliest memories of the hospital are positive, filled with small moments of comfort and routine. “I’d wake up early in the morning, sleep on the car ride to Nemours, and after the visit, I’d get some popcorn from the barista place in front of the entrance,” he says. These small treats made his hospital visits more bearable. “Then, we’d go to Barnes & Noble, and I’d get a hot chocolate from the in-store Starbucks while I looked at my brand-new Lego Star Wars watch,” Dylan remembers.
As he grew older, Dylan began to experience social anxiety, a common struggle for children with cleft and craniofacial differences. “Having the condition gave me social anxiety when I was younger,” he admits. “But the psychology team at Nemours helped me out.” They made him feel understood and supported, which was incredibly important. Despite the challenges, Dylan found a silver lining in his situation. “Plus, I got to skip school occasionally, so it wasn’t too bad,” he adds.
Plastic surgeries were a significant part of Dylan’s treatment plan at Nemours. Each procedure was meticulously planned and executed to help him achieve the best possible outcomes. The expertise of his surgical team made these interventions as smooth and effective as possible. However, Dylan’s care extended beyond the operating room. The psychology and social work departments at Nemours played a vital role in his recovery, providing therapy and support to help him navigate the emotional challenges of his condition.
“It was always a pretty nice experience after the surgeries,” Dylan shares. “The staff was always so kind to me, even as I grew older. I remember one nurse who gave my mom and me tickets to the toy drive, which really encouraged me to walk after a rib grafting. She also gave me a crossword puzzle to keep me occupied and distracted.” These small gestures encouragement made a big difference in Dylan’s recovery process, helping him to stay positive and motivated.
Now 19, Dylan is planning for his future and pursuing a career in the trades, particularly drawn to HVAC and plumbing. Although his treatments at Nemours have concluded, he still plans to have some work done on his gums, a final step in ensuring his overall well-being.
To those walking a similar path, Dylan has a few pieces of advice. “You’re pretty much going to have to wait until your late teens for everything to get done,” he reflects, speaking from his own experiences. “Try to have some fun with life before then instead of waiting until after,” he advises. Dylan also shares practical tips for surgery, recommending others, “Drink some pineapple juice to help with swelling. Learn to ignore your taste buds for surgery because there is no such thing as a good flavor in medicine. And finally, try to learn how to breathe through your nose after recovering from surgery.” Dylan’s story is a reminder that those facing similar challenges are not alone and that there are ways to find joy and strength even in the most challenging times.
