Spotlight on the Shriners Children’s Boston Cleft Lip and Palate Clinic

July is Cleft and Craniofacial Awareness Month, and we are highlighting the amazing work done by the staff at Shriners Children's Boston.

Boston Cleft Lip and Palate Clinic

Shriners Children's Boston provides gold-standard care for children requiring cleft lip and cleft palate treatment throughout their childhood. In most cases, families are introduced to their medical team before their child's birth. "Shriners Children's Boston is involved with Mass General Hospital's fetal medicine program, where an expectant parent has a child with a cleft lip and palate, and that's when Shriners Children's gets involved," said Sandy Barrett, BSN, RN, CCM. "Our medical team takes the newborns right away into our clinic."

About Facial Clefts

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, and 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. According to the American Cleft Palate-Craniofacial Association (ACPA), approximately 7,000 babies in the U.S. are born with a cleft lip and/or palate every year.

The Clinic

The Shriners Children's Boston Cleft and Craniofacial Center is a collaborative program in partnership with Mass General for Children.

World-class care is provided by an ACPA-approved team. During a single visit, children can meet with speech pathologists, orthodontists, dietitians, occupational therapists, oral and maxillofacial surgeons and plastic surgeons.

As the team coordinator for the cleft lip and palate clinic, Sandy ensures the program runs smoothly for staff, patients and their families. "Patients are seen by each provider, and the visit is done as efficiently as possible, not just for the family and the patient, but also for the staff. We make sure everyone is satisfied with the visits."

The clinic is operated once a month to prioritize the care of patients and their age-related needs. "We start by seeing our babies, so they can be fed and get their naps in throughout the day," said Kavitha L. Ranganathan, M.D., who is a board-certified plastic surgeon and co-director of the cleft and craniofacial team. "By the end of the day, we see the older kids so they can go to school before visiting Shriners Children's. We try to be thoughtful about what we're doing in the clinic all the time and for every single patient."

Patients receive a comprehensive care plan to meet their clinical and developmental needs, which is reviewed when the cleft lip and palate team comes together after the clinic concludes for the day. Occupational therapist Jessica Willoughby, MOT, OTR/L, BT-C, said this process enables the team to offer a comprehensive blueprint for each family of a child with a craniofacial condition. "The collaboration and open communication make the clinic so special, allowing everyone to come together to create a tailored plan that best supports the family and improves patient outcomes," said Jessica. "This process allows us to work together for future planning."

At these clinical briefings, staff present each patient they've met with that day to the medical team. "We go around the room, and everyone who has seen the patient provides their input on care," Dr. Ranganathan said.

Meet the Surgeons

Dr. Ranganathan and Zachary Peacock, D.M.D., M.D., a pediatric oral and maxillofacial surgeon, serve as co-directors of the Cleft and Craniofacial Center.

Both doctors are extremely passionate about helping young children with craniofacial conditions, regardless of their families' ability to pay or insurance status. "New families coming into our hospital for cleft lip and palate treatment should know they have a new extended family at Shriners Children's Boston. The love and care your child gets permeates throughout our hospital," said Dr. Ranganathan.

Dr. Peacock was drawn to the cleft and craniofacial program because of the influence surgeons can have on young patients. "We can impact their anatomy, their function, their appearance, but also we have an impact on their future," said Dr. Peacock. "Patients and families are in good hands here. Shriners Children's Boston treats not just the condition, but the whole patient and family."

Nutrition Focused

Part of supporting a patient's overall health and well-being involves feeding and nutrition. Jenny Shiel, MS, RD, LDN, plays an important role in this aspect of care. She is responsible for assessing a patient's growth trends and nutritional intake, followed by making recommendations to the rest of the team. "I work closely with other team members to ensure patient needs are met. Often, infants may be seen alongside a speech language pathologist for an assessment of how they are feeding via bottle, and if any adjustments are needed," said Jenny. "Other team members are looking to understand a patient's growth and ensure they are developing appropriately so they will be ready for a future surgical repair, and I am available to discuss that information with the team."

Occupational Therapy

The cleft lip and palate clinic also offers occupational therapy (OT) services to treat patients with craniofacial conditions. Dr. Ranganathan relies on the lip taping and nasoalveolar molding skills of the OT and orthodontic team, as this process helps prepare the patient's tissue before surgery. "Before an infant's first surgery, we start by taping the upper lip. This helps to align the gums, lip and muscles in preparation for the surgery," said Jessica. "After the initial lip surgery, we involve the family inscar management to minimize the appearance of the upper lip scar and enhance the beautiful smiles of our cleft lip and palate patients."

Grateful Families

Shriners Children's Boston has impacted many parents, including Beccalyn. She came to Shriners Children's Boston after finding out her son Flynn was diagnosed with a cleft lip and palate. "There was no question about going anywhere else, so we traveled four hours from Vermont," said Beccalyn. "The staff made sure we understood everything surrounding Flynn's care plan."

Craniofacial patients and their families have strong support at Shriners Children's Boston through groups such as the Patient and Family Advisory Council (PFAC). The craniofacial PFAC program started earlier this year, and Sandy said it "meets virtually every few months." The program helps parents of newborns develop a relationship with families who have been through a cleft diagnosis and the surgeries that follow. "As I tell more families about the PFAC program for cleft lip and palate patients, more caregivers want information and an invitation to the next meeting," Sandy said. "This program is unique to our hospital because we identify what patients and families need and then do it."