One of a Kind: Charlie’s Story
The delivery room in a small Texas hospital went quiet the moment Charlie was born. Within hours, he was transferred to a higher-level NICU in Austin, where doctors diagnosed him with craniosynostosis, a condition in which the bones of the skull fuse too early.
His family was planning to move to Arizona in three weeks. A NICU nurse reached out to Phoenix Children’s on their behalf.
“We saw the team the week we arrived in Arizona,” his mother, Tricia, recalled. “They reviewed his CT scan and told us what to expect. They said, ‘The first year will be hard for him, but it will be a lot harder on you.’ We didn’t understand what that meant at the time. But it was so true.”
Charlie had five surgeries in his first year. Seven more before he turned 3. He also received treatment in the Aerodigestive Clinic and the Intensive Feeding Clinic for the breathing and feeding challenges related to his syndrome. His family moved from Tucson to Phoenix for an entire month so Charlie could attend feeding clinic appointments five days a week.
His feeding team followed Charlie’s lead rather than forcing him to follow theirs. They embraced his obsession with Oscar the Grouch and his preferred diet of yogurt and Cheetos puffs and helped him slowly expand his world. A year later, he was no longer receiving tube feeds. Eighteen months after that, on his fourth birthday, he received the gift he had been asking for. His g-tube was removed.
The support extended beyond the clinic walls. Child Life specialists arrived during the hardest moments. Therapy dogs made their way down the hall and into his room. His family was selected for a sponsored trip to the Children’s Craniofacial Association Annual Family Retreat in Seattle, where Charlie finally met others who understood.
Now close to 7 years old, Charlie is a voracious reader working his way through Greek mythology. He loves parkour, drawing, swimming and climbing and can often be found dressed up in a tie or blazer. He is a big brother to his younger brother, Cal, his best friend.
“Charlie has some procedures ahead,” Tricia said. “But for now, he is growing and thriving.”
Just as he always planned.
All About Charlie
Favorite subjects: Reading and science
Favorite TV show: SpongeBob
Hobbies: Reading, writing stories and building forts
When I grow up, I want to be a: scientist
- “Charlie has some procedures ahead. But for now, he is growing and thriving.”TriciaCharlie’s Mom
Phoenix Children’s Patient Ambassadors are a valiant bunch—they’ve shown immense strength amidst great setbacks. They’re also athletes, intellectuals, artists and the best siblings.
Even though their lives are full of medical appointments, they want to help other patients. Support kids like Charlie.
