Henry's Forever Smile
Henry’s Shriners Children’s Boston story started before he was born. His mother, Meghann, had an anatomy scan when she was 20 weeks pregnant, revealing her son’s diagnosis: a cleft lip and cleft palate.
“I met with a doctor and she recommended Shriners Children’s Boston for cleft lip and palate care,” said Meghann. The condition, typically diagnosed during an ultrasound, gives doctors a head start in mapping out a care plan.
Facial clefts form in the womb and are the No. 1 craniofacial birth difference treated at Shriners Children’s. A cleft lip forms when the lip does not properly develop, causing a newborn’s smile to split. A cleft palate is the result of tissues on the roof of a child’s mouth not fusing. If the conditions are not fixed, they can affect breathing, speaking, eating and appearance. “Very early in a child’s development, these segments don’t meet up properly and that leads up to these fissures and clefts that we know of as cleft lip and palate,” explained Jay Austen, M.D., a plastic surgeon on the cleft and craniofacial team at Shriners Children’s Boston and chief of plastic and reconstructive surgery at MassGeneral Brigham. The Shriners Children’s Boston Cleft and Craniofacial Center is a collaborative program with MassGeneral Hospital for Children.
Patients will receive a comprehensive care plan to meet their clinical and developmental needs. In a single visit, patients have access to plastic surgeons, speech pathologists, orthodontists and dietitians. “You may only need one of us, you may need five of us, you’ll need us at different points in your child’s life, but you know that’s what we’re here for,” said Dr. Austen.
In June 2022, when he was just 4 months old, Henry had his cleft lip repaired, followed by surgery to address his cleft palate the following November.
We were all stressed out about the upcoming surgery and the recovery. Dr. Austen made it seem like everything would be okay.
Meghann credits Dr. Austen with helping her family prepare for Henry’s hospital stays. “We were all stressed out about the upcoming surgery and the recovery. Dr. Austen made it seem like everything would be okay,” she noted. “That was helpful to have his perspective of ‘this is something the hospital has done for a long time, and this is not something to be afraid of or worry about.'” Meghann said Dr. Austen’s optimism and positivity helped the family throughout the treatment process.
Patients in the cleft and craniofacial program benefit from clinicians who routinely treat cleft lip and palate conditions. “That’s one of the many great things about the Shriners cleft lip and palate program. We have a world-class team dedicated to not only doing this work, but doing it together to make it not just the best care, but the easiest care for the families,” said Dr. Austen.
Meghann shared that the clinical team, especially Sandy Barrett, a nurse care manager, was a great resource. Nurse care managers and social workers are available during and in between appointments, to support patients and their caregivers with the answers to questions associated with craniofacial conditions. “Sandy, who has helped us with coordinating appointments, has been helpful. Anytime I email her a question, she is so responsive.”
Henry is a happy and active toddler who loves playing with airplanes and trucks. “We call him ‘Wreck-It Ralph,’ he’s like a bull in a china shop, he loves to have fun,” joked Meghann. Henry also loves listening to music, especially with his grandfather. “My dad will watch music videos with him. Every time he hears music, he’s drawn to it.”
Meghann gets emotional when describing how important the Shriners Children’s Boston music therapists were to her son. “I remember the first time he had his lip done, they had a woman playing guitar,” said Meghann. “She was singing Twinkle, Twinkle Little Star.” Pediatric-trained music therapists tailor each session to fit the child’s needs. The sessions can help provide comfort during a procedure, act as a distraction to help with pain management, or improve a child’s sleeping patterns. Music therapists work directly with a child's care team to understand their individual goals and monitor progress.
Meghann urges young families who have received a similar diagnosis to take advantage of early intervention and other resources provided at Shriners Children’s Boston. “We have a speech therapist who works with Henry. In the beginning, it was help with feeding with the cleft palate, which was challenging,” Meghann explained. “Once he had the palate repair, just making sure he was able to feed, then transition from formula to solids.”
Even though the process has been challenging, Meghann explained that it is manageable. “From the start to finish, it has been great working with the team at Shriners Children’s Boston. We’ve always felt like the team is helpful and accommodating. They have the best interests of Henry in mind.”