Richmond | Services: Center for Craniofacial Care
“She’s my little girl, and she’s beautiful,” said Curtis Pitts of his four-year-old daughter, Casi. “I’m so amazed at her progress.”
When Curtis’ wife, Mary, was 26 weeks pregnant, an ultrasound revealed that Casi had bilateral cleft lip and palate, an opening in the lip, gum and roof of the mouth that can impact feeding and speech. One of the most common birth defects, cleft lip and palate requires multiple surgeries to repair, usually beginning at 10-12 weeks of age.
Before Casi’s birth, Mary and Curtis met with Jennifer Rhodes, MD, FACS, FAAP, Director, and Ruth M. Trivelpiece, M.Ed., CCC-SLP, Program Director, Center for Craniofacial Care at Children’s Hospital of Richmond at VCU (CHoR).
“We went into this meeting with what seemed like a million questions, but before we had a chance to ask any of them, they were answered,” Mary remembered. “We also appreciated the time they spent with us and the way they spoke in layman’s terms.”
After Casi’s birth, Ruth visited Mary in the hospital to provide special bottles and teach her how to feed her daughter.
“Although Ruth had shown us [about feeding] before birth and told us what to expect,” Mary recalled, “it’s different once the baby is born.”
Casi had her first surgery to repair her cleft lip when she was 10 weeks old. Her second surgery followed at 11 months to close her palate and required an overnight hospital stay. Because her older brother, Chase, who has hemophilia, also was going to be at CHoR for a procedure requiring an overnight stay, Dr. Rhodes coordinated Casi’s surgery so the siblings could share a hospital room, and Mary and Curtis could be with both of them.
“Before Casi’s surgery, Dr. Rhodes explained the process so much that I knew everything that was going on,” said Mary. “I felt a sense of calm. Dr. Rhodes told me she would take care of my child as if [she] were her own.”
A week after Casi’s second surgery, break-through bleeding in her palate required a trip to CHoR’s emergency room.
“Dr. Rhodes and the entire craniofacial team were there,” Curtis recalled of Casi’s emergency room visit. “It made us feel so comfortable.”
Although Casi’s doctors won’t determine if she needs another surgery until after her six-year molars come in, the Pitts meet with the craniofacial team, which includes Dr. Rhodes and specialists from genetics, psychology, plastic surgery, dental, otolaryngology (ENT), audiology and speech therapy every six months to follow her development. In addition to reviewing medical needs, the team has made recommendations for educational therapy services and provided emotional support to the family. The bi-annual visits will continue until Casi reaches adulthood.
Mary describes Casi as a “girly-girl tomboy mix” who loves princesses and pink sparkly clothes as much as she loves to jump, climb and tackle her brother. A fan of ravioli, bananas and chicken tenders, Casi can drink out of a straw and has recently started biting apples, two skills that can be difficult for children with cleft palates. Her speech is progressing well although Mary said Casi gets frustrated when she has trouble voicing what she wants. Fortunately she’s receiving school-based occupational and speech therapy services and according to Mary, “is learning so much.”
“The team recommended the school Casi attends [because of the therapy services offered there],” said Mary who shared her story on the Center’s web site. “I appreciate them being readily available anytime I need them.”
For Curtis, his initial fears and concerns about Casi’s diagnosis are gone. “If Dr. Rhodes and her team hadn’t been there,” he said, “I don’t know what we would have done. I’m just so happy that it turned out like it did.”