Hitting All the Right Notes: Cleft Care at Shriners Children’s New England

The cleft and craniofacial program at Shriners Children’s New England has supported 13-year-old Abby through every stage of her cleft care journey, providing exceptional treatment while also helping her gain the confidence to find her unique voice.

During pregnancy, Abby’s mom, Amanda, had an ultrasound that revealed she would be born with a cleft lip and palate. A cleft lip occurs when the upper lip does not properly form as the fetus develops in the womb. A newborn’s smile will have an opening that may extend into their nose. Similarly, a cleft palate occurs when the tissues that form the roof of the mouth don’t join together before birth.

Abby became a patient at Shriners Children’s New England when she was just 12 days old and had surgery to repair her cleft lip at three months old. The multidisciplinary cleft and craniofacial program brought together every specialist Abby needed, all in one place, giving her family peace of mind as they navigated her diagnosis and care plan.

“We came to Shriners Children’s because we wanted Abby to be treated by people who understood both the medical side and the human side of cleft care,” explained Amanda. “From the beginning, every decision felt thoughtful, collaborative and grounded in what was best for her long-term development. As parents, that mattered more than anything.”

Abby had her cleft palate repaired just a few days before her first birthday. Plastic surgeon Kristin Stueber, M.D., a long-time member of the cleft and craniofacial program, performed Abby’s surgeries. Soon after Abby began speech therapy at Shriners Children’s New England, an important intervention for children with cleft repairs. Speech therapy helps improve speech clarity and language skills that are affected due to anatomical changes from surgery. As Abby remembers, “Speech therapy helped me with my s’s.”

At regular visits to the monthly cleft lip and palate clinic at Shriners Children’s New England, Abby’s care team assessed her progress and planned the next steps in her treatment. Even from a young age, the personalized, compassionate care she received made an impact. “When I go to Shriners, I feel more comfortable than when I'm at any other medical facility,” she said. "I’ve received countless items over the years to keep me entertained during cleft clinic, and I remember always getting a toy after I was done having my photos taken. There are so many ways the staff show they care.”

Abby required another surgery for her palate when she was 6 years old. She was experiencing velopharyngeal insufficiency, a condition that causes air to escape through the nose, affecting speech production and resulting in a nasal sound when speaking. In addition to surgery, she continued to undergo extensive speech therapy to help her speak with more clarity and confidence. 

Continuous monitoring of dental and facial growth is an essential part of a cleft patient’s plan of care. At age 10, Abby had her final surgery, an alveolar bone graft. This procedure replaces missing bone in the upper gum and helps support proper tooth development. Orthodontist Aaron DeMaio, D.M.D., coordinates care for Abby and other Shriners Children New England patients who require braces as part of their overall treatment plan.

Through each stage of treatment, Abby’s family was grateful for the cleft and craniofacial team’s constant support. “Having a child go through multiple surgeries at such a young age is something you can’t really prepare for,” said Amanda. “You learn to balance fear with trust, and you rely heavily on the team around you. What made it bearable was how consistently the staff treated Abby like a whole person, not just a case. They celebrated her milestones, remembered her interests, and made her feel capable even when she was recovering from something difficult.”

That support gave Abby confidence as she got older and explored new interests. In fourth grade, she began playing the flute and quickly developed a passion for it. Watching a patient achieve goals that once might not have seemed possible is always a highlight for their care team. "When a patient is able to play a wind instrument, it means that their palate is functioning normally,” said Dr. Stueber. “When I first heard about Abby's accomplishments, I was pleased she had such a functional result.”

According to Amanda, Abby’s childhood of cleft care was foundational to her self-expression. “Shriners Children’s didn’t just help her medically – they helped her grow into herself. That confidence carried into music, where she found her voice in a different way through the flute. Watching her step into performances with that sense of capability has been one of the most meaningful parts of this journey.”

When Abby fractured her elbow recently, she was discouraged because it took time away from playing the flute. There was one silver lining, however – she received her orthopedic care at Shriners Children’s New England. “I'm so glad that I got to go to Shriners to get my cast on and do my X-rays,” said Abby. “It made me feel comfortable going there because I knew I'd see familiar, smiling faces.” Added Amanda: “Every provider explained things in a way that made sense, and they always made sure Abby felt included in her own care. That gave her confidence I don’t think she would have found anywhere else.”

Abby plays flute in the school band and plans to audition for a local youth symphony orchestra. She also enjoys reading, writing poetry, and has started writing her own book. From her family’s view, Abby’s achievements are rooted in her patient experience. “Shriners Children’s made a hard path feel navigable,” said Amanda. “They gave Abby the tools she needed, but they also gave her the belief that she could do hard things, and that has shaped who she is today.”