Jace’s Cleft Palate Journey: A Real Patient Story

Jul 10, 2024 | admin

To honor National Cleft and Craniofacial Awareness and Prevention Month this July, American Board of Oral and Maxillofacial Surgery (ABOMS) Diplomate David Wilson, DMD, MD, FACS shared his experience as a surgeon specializing in Cleft and Craniofacial surgery with us. He also asked the mother of his patient, Jace, to share their story. 

Dr. Wilson said, “I have known this patient and their family for 6 years and they hold a very important place in my heart.” 

Below, Jace’s mother shares their family’s ongoing journey of resilience.

To properly tell the story of our cleft journey, we’d have to rewind to the day we found out our unborn baby would have a cleft lip & palate, at a 20 week ultrasound appointment. I’ll never forget the technician excusing herself to get the doctor, and the doctor looking at the screen for what seemed like forever before starting the sentence with “now, normally….”  As soon as those words left his lips, my body fell numb and I felt like I was floating. The next 48 hours were full of fear, grief, and heartache for our baby.

While the idea of our perfect unborn son being born with any sort of health issues took a bit to wrap our heads around, I did all I could think to do at the time…. Google. I researched and read about all sorts of cleft stories, from the minor to the major. I learned words like “unilateral” and what the difference between a cleft lip and palate was. I read about children born in other countries without the medical means to correct their facial imperfections. I felt humbled and blessed. From that point on, I knew our baby would live a happy and healthy life, no matter what—God had this. We would soon go on to meet his surgeon Dr. Wilson and find peace and comfort in knowing he was in the best possible hands for the surgeries to come.

When we reflect on the ups and downs of every surgery, the thing that sticks out the most is Jace’s resilience. He was never down for too long afterward, always bounced right back, and his desire to eat and nourish his body always outweighed any pain he was obviously encountering. I’ve always marveled at the beauty of that. 

Jace is now 6 years old and living his best life. He just finished kindergarten and he is the cutest, sweetest little boy who loves playing outside and making new friends. He can bowl a 223 and has the best sense of humor. He’s had a total of 4 surgeries so far (lip repair/ear tubes, palate repair, pharyngeal flap surgery, and ear tubes replaced). He’s been in speech since he was 2 years old and while he’s come a long way, it’s still a work in progress. He’ll have another surgery in a couple of years in which a bone graft will be taken to fill in his gum-pad so that his adult teeth can fill in. 

My husband and I both agree that we wouldn’t change a single thing about Jace’s journey. He’s a strong, fearless little boy with a huge heart. The hurdles he’s faced have only made him stronger. When people say someday his scars will fade and won’t be noticeable, I tell them I hope that isn’t so; he’s earned every single one and they tell his beautiful story.

Read more posts for National Cleft and Craniofacial Awareness and Prevention Month on our blog »