Awareness Month strikes personal chord for cleft and craniofacial team

July is National Cleft and Craniofacial Awareness and Prevention Month, but for the cleft and craniofacial program team in Indiana University School of Medicine's Department of Surgery, it holds a deeper meaning. It’s a time to reflect on the lifelong impact of care and to continue championing a cause that has shaped personal and professional journeys. 

“I have been a part of the cleft and craniofacial team for a little over 10 years now, but I was actually a patient of the program when I was a kid,” said Cleft and Craniofacial Program Coordinator, Caitlin Church. “I was born with a cleft lip and palate, so from the age of four months on, I was a patient of the team all through my teenage years until I was finished with my surgeries. I stayed involved as a volunteer with the team, and eventually, I became a full-time team member.”

As a former patient and current staff member, Church understands the challenges and stereotypes patients with cleft and craniofacial differences face as a result. 

“I think a lot of times people assume that because we have a craniofacial difference, that means that we also have some sort of cognitive difference as well,” said Church. “I think people make a lot of assumptions based on someone’s speech, too. It's important for people in the wider community to not base their assumptions on how someone with a craniofacial difference sounds or how they look — getting to know us and getting to know our stories is essential.”

For Cleft and Craniofacial Program Nurse Coordinator, Jodie Skinner, RN, the mission to support patients and their families runs deep. Her own experience as a mother to a child born with a cleft lip and palate fuels her dedication to raising awareness and making a meaningful impact. 

“Craniofacial Awareness Month has always been important to me,” said Skinner. “Having my own personal journey with a son born with a cleft lip and palate, I have tried to do my part in raising awareness long before I worked in this specialized field. For me, this month focuses on the diagnosis and long journey of navigating challenges and recognizing successes for individuals with facial differences.”

Training the next generation of craniofacial surgeons

To help with the continuous advancement of quality care in the cleft and craniofacial field, the Department of Surgery established the Von Deilen-Curtis Fellowship in Craniofacial Surgery. Former fellow, Fatih Zor, MD, decided to pursue the fellowship because of the impact he could have on patients for the rest of their lives. 

“I was drawn to the complexity of craniofacial anatomy and the precision required in surgery, but even more so to the meaningful, long-term relationships formed with patients and their families,” said Zor. “Cleft and craniofacial conditions affect so much more than appearance — they influence speech, feeding, breathing and self-esteem. Being part of a team that helps patients overcome these challenges and thrive inspired me to seek advanced fellowship training, where I gained the specialized surgical skills and holistic patient care experience necessary to make a lasting difference.” 

Commitment to lifelong care and continuous awareness 

That same passion for lifelong, patient-centered care inspired faculty surgeon Emma Cordes, MD, to pursue craniofacial surgery. For her, the opportunity for patients to thrive, be heard and be seen for who they truly are remains at the forefront of her purpose.

“As a physician, I want to make sure that my patients are cared for from both a medical standpoint, but also from a social and emotional standpoint,” said Cordes. “Making sure my patients feel like they are part of a bigger and supportive community of individuals and families with facial differences is so critical to how they feel about themselves and their diagnosis. The more we can do to advocate for normalizing these diagnoses the better.”

While July marks a month of awareness for the cleft and craniofacial community, the cleft and craniofacial team in the Department of Surgery remains dedicated to raising awareness throughout the year.

“It's important to bring awareness to cleft and craniofacial differences because getting a new diagnosis about a craniofacial anomaly can be a really scary and isolating experience,” said Cordes. “Oftentimes people don't know anyone else that is experiencing something similar, but there are so many resources we have and ways we can support families and patients. The more people know about these anomalies the easier it becomes to connect with others and feel less alone in the process.”