Shriners Children's Boston Clinicians Present at the American Cleft Palate Craniofacial Association Conference

July is Cleft and Craniofacial Awareness Month. Shriner's Children's Boston is highlighting the important work of the craniofacial team.

The Cleft and Craniofacial Center at Shriners Children’s Boston provides comprehensive care to patients and families from across the country and around the world who are seeking cleft lip and cleft palate treatment. The Center is a collaborative program with MassGeneral Hospital for Children.

Managing a cleft diagnosis can be difficult for any family, but factors such as limited resources, cultural practices and undiagnosed medical problems can pose additional challenges. At the 2024 American Cleft Palate Craniofacial Association (ACPA) conference, dietitian Jenny Shiel, MS, RD, LDN, and nurse care manager Sandy Barrett, BSN, RN, CCM, presented strategies they utilize to meet the needs of special patient populations.

The Cleft and Craniofacial Center is an ACPA approved program, and this year marked the first time a dietitian or nurse care manager from the Boston team attended the conference. The annual gathering includes clinicians from large and small hospitals, and healthcare facilities treating clefts and craniofacial conditions, as well as patient families. Sandy and Jenny submitted an abstract for their joint presentation about strategies for removing barriers to cleft care for international patients, patients who have just arrived in the U.S., and patients from rural religious communities. Out of more than 600 applications submitted, theirs was one chosen to be shared at the conference.

“The theme of our presentation was healthcare literacy, and how focusing on that ensures treatment goes well for patients in special populations,” said Sandy. “We presented successful strategies for providing the best possible family-centered care while also being culturally competent.”

At each visit to the Cleft and Craniofacial Center, families can meet with a plastic surgeon, orthodontist, psychiatrist, nurse care manager, speech therapist and dietitian, helping to streamline their care. Empowering families to navigate the healthcare system and advocate for their children is central to Sandy’s role. She is a main point of contact: scheduling appointments, arranging transportation and finding additional resources outside of the hospital. Jenny assesses pre- and post-surgical feeding and growth and malnutrition concerns in cleft patients, and provides ongoing nutrition education to families. When working with special populations, strategies for success include the use of medical interpretation services, presenting verbal and written information in plain, clear and appropriate language, using open-ended questions and encouraging families to ask questions.

“No matter what language a family speaks, we try to anticipate their needs and make sure they understand their child’s care,” said Sandy. “Collaborating for the good of the patient is second nature to us. At other facilities it may take several steps for a family to find the answers they need, but here they can contact us directly when they have questions or need help.”

Jenny was surprised to learn that she was one of the only dietitians at the conference, a detail that illustrates the level of specialized care offered at Shriners Children’s Boston. “Not many programs have a dietitian on staff,” said Jenny. “They only consult with them in a worst-case scenario. Our ability to offer robust, multidisciplinary care to every child is what sets us apart from the rest.”

The Cleft and Craniofacial Center’s highly-personalized care continues throughout a patient’s entire course of treatment. Patients from New England and across the country, as well as Africa, the Caribbean Islands, and Central and South America receive the same level of care prior to admission, while in the hospital and once they return home. Communication methods are adapted to meet the needs of each family, using written correspondence or collaborating with other community members to ensure that phone calls are received. Discussing post-operative recommendations well in advance and supporting a family’s beliefs while also providing alternatives help patients thrive.

Sandy and Jenny’s efforts reflect a commitment to the well-being of each patient family that is central to the Shriners Children’s mission. “We’re always trying to go the extra mile for our patients,” said Jenny. “Our care not only addresses medical concerns, but it also focuses on social determinants of health. We don’t just look at the cleft, but at the whole picture of the child and their family, too.”