Cleft Lip and Palate Care at Shriners Children's Boston is "Exceptional"

July is Cleft and Craniofacial Awareness Month – and we are highlighting the wonderful outcomes for patients like Hunter.

Hunter’s mom, Kayla, vividly recalls the day she went for her 20-week ultrasound, excited to find out whether she was having a boy or a girl. The technician performed the ultrasound and immediately told Kayla that she had to speak with the doctor. “The worst case scenarios sprang to my mind right away,” Kayla said. Her doctor told her that her baby would be born with a cleft lip and recommended additional imaging to determine if the palate was also involved. Kayla’s doctor quickly sent her to Boston for an MRI, where imaging revealed that her baby had a small pinhole in the gum line and a unilateral cleft lip on the left side. Kayla had another ultrasound when she was eight months pregnant to confirm that her baby’s palate was not involved. That clarity helped determine the best course of care.

Hunter has been a patient at Shriners Children’s Boston since he was 3 months old. Kayla and her family learned about Shriners Children’s Boston through the Sunshine Club, an Anah Shrine Center club in Bangor, Maine. Members of the club noticed that Hunter had a cleft lip and recommended Shriners Children’s Boston for care. Discouraged by an experience with a surgeon in Maine, Kayla decided to contact Shriners Children’s Boston.

Hunter had his first surgery in 2018 when he was almost 7 months old. “To reassure me that everything would be well and that Hunter would still look handsome with his new smile, his entire team was present that day. I am grateful to the entire team for the incredible work they accomplished,” said Kayla.

Hunter, now 5, is a patient of Kavitha Ranganathan, M.D., co-director of the Cleft and Craniofacial Center, and he comes to Shriners Children’s once a year for evaluation. When he is between 8-10 years old, he will require a surgical procedure to address the pinhole in his gum line. Kayla expects that a component of that treatment will involve dental care. At Shriners Children’s Boston, cleft and craniofacial care can also include working with speech therapists, nutritionists, audiologists and dental radiologists to identify and help address related needs.

Kayla expressed appreciation for Hunter’s care team, who responded to all of the family’s questions and developed a comprehensive treatment plan for her son. "The entire cleft crew is exceptional. When you visit Shriners Children’s Boston, you are under the best possible care. You have a whole support staff behind you who will guide you through every step of the process and address any questions or concerns," she said.

Kayla highlighted her family’s relationship with Nurse Care Manager Sandy Barrett, RN, BSN, CCM, as a particular comfort. “She always goes above and above to ensure that we are organized and prepared for our three-state trip.” Kayla and Hunter travel to Boston from their home in Maine for his appointments.

As Kayla reflects on her family’s five-year relationship with Shriners Children’s Boston, she describes the moments before and after a procedure as most notable. “Before Hunter underwent surgery, a wonderful group of staff visited and kept an eye on us. They would also come in simply to play with Hunter. One of the anesthesiologists asked me to accompany her when I arrived, held my hand, and assured me that she would be there for me when he awoke. She then asked me to sing with her while she put him to sleep. The surgeon's staff realized how difficult it was for me to experience this as a first-time mom, so everyone stopped by to see how we were doing after the procedure,” Kayla said.

Outside of the hospital, Hunter is a happy and creative child. He loves to paint and color, and is always coming up with creative new ideas to express himself. He often uses rocks and Legos as part of his creative process. Minecraft, matchbox cars and the outdoors are some of Hunter's favorite interests.

“We regularly visit the seashore to gather sand, sea glass and seashells,” Kayla shared. Hunter is a big fan of Bar Harbor, Maine, and he often requests a trip to one of his favorite places. “Hunter finds both the whale-watching boats and lobster boats that we occasionally see on those trips to be really intriguing.”

Kayla expressed appreciation for Shriners Children’s Boston and the staff who have created such a supportive environment for her and Hunter.