With You Every Step of the Way: Continuity of Care for Cleft and Craniofacial Patients

girl holding handEach year, one in 700 children is born with cleft and craniofacial differences. These can result from abnormal growth patterns of the face or skull, which involves soft tissue and bones, and can include malformations stemming from genetics, disease, or environmental factors.

At UF Health, each patient is backed by a team of interdisciplinary practitioners who lend a holistic perspective to the care that accompanies the patient and their families every step of the way.

“Many people think that care for craniofacial differences and cleft begins and ends with a surgery,” said Jessica Ching, M.D., assistant professor in the division of plastic and reconstructive surgery in the UF College of Medicine. “In reality, we’re with these patients every step of the way.”

While care often includes surgical procedures, Ching and her team provide a wide spectrum of treatments and support for their patients even into adulthood. These needs change over time. In the early stages, one of the most vital things Ching looks for is adequate nutrition.

“Ensuring the babies are able to get the nutrition they need helps ensure they can avoid missing major developmental milestones,” Ching said.

Ching’s team creates a unique treatment plan for each patient tailored to their needs–incorporating those of the parents and guardians, too.

“When we think about what the child needs, we think of the parents, too,” said Holly Shenk, R.N., coordinator of the UF Health Craniofacial Clinic. “This can be a learning process for both child and parent, and one that can be alienating without the right support.”

One means of support for patients and families is the annual Craniofacial Camp. Free to UF patients, the camp gives kids the opportunity to spend four days developing coping skills and building self-confidence. This year, the camp will stay closed due to the coronavirus pandemic.

But families still have other ways to connect.

Shenk links patients with Facebook support groups made for families, by families. Although a social worker helps run the social media group, the space is filled with families offering resources and shared experiences on how to overcome challenges like bullying or anxiety.

“Our online support groups are a significant source of encouragement and advocacy,” she said.

The UF Health Craniofacial Center is also heavily involved with the Florida Cleft and Craniofacial Network, or FCCN. The cooperative group is composed of members from the University of Florida, Children’s Medical Services of the Florida Department of Health, regional and local family networks, and Florida health care providers.

“Like our center, it helps educate and empower both families and professionals with current knowledge and understanding of this population’s needs,” Ching said.

July is National Cleft and Craniofacial Awareness and Prevention Month.

For an overview of opportunities to train and work with the UF College of Medicine’s Division of Plastic & Reconstructive Surgery at UF Health, watch the video below.