By Tim Wholf

In my role as director, I get to meet many amazing people. I recently had the opportunity to sit down with one such person: Luci Capo Rome, a retired advanced practice professional nurse, whose pen name is Bella Lucia. Luci was born with a congenital, severe and complete bilateral cleft lip and palate. Cleft lip and palate affect one of every 700 live births.

A person with a facial difference refers to anyone whose appearance, from the neck or above, has been affected by a congenital (from birth), acquired (after birth) or episodic (comes and goes) condition or syndrome.

A craniofacial difference refers to an anomaly of the face and/or the head, which can result from abnormal growth patterns of the face or skull, involving soft tissue and bones. They can be congenital, genetic, spontaneous and/or acquired from disease or trauma. There are many types of craniofacial conditions, such as cleft lip/palate, frontonasal dysplasia, hemangioma and Moebius syndrome, just to name a few.

Luci’s difference encompassed the absence of her hard and soft palates, missing bone where front teeth are inserted and a distorted nose. Her upper lip was totally open on both sides. Luci stated, “My shocking birth brought shame, fear and superstition to my family. Not much was said back in the 1950s.” Luci indicated the term “hare lip” was spoken, which is considered a derogatory term today. There was very little support and lack of education for parents and children at that time.

“All of the medical, surgical and nursing personnel and my parents did the best they could to see that I received the best care,” Luci related.

Difficulty with eating, drinking, speaking and breathing are prominent with craniofacial differences. Treatments for many of the problems associated with facial differences continue to change and have improved over the years.

Luci’s history includes multiple surgeries from birth to age 51, speech therapy and intensive dental care that included oral, maxillo-facial and prosthodontic procedures. Her meticulous dental care and oral hygiene continue today. With age comes a dry mouth which can lead to tooth and gum disease. Luci has an asymmetrical nose and two scars on her upper lip that extend into her nostrils.

“My craniofacial difference does not define who I am. I enjoy being and looking different,” Luci said.

Little research can be found regarding craniofacial differences in older adults. An article from The Cleft Palate-Craniofacial Journal published in 2015 reported on a qualitative study that was done on cleft lip/cleft palate affected adults from age 57-82. The article centered around feeling isolated at times and having little contact with other people with a cleft. Many participants in the study felt ignored because of age and appearance. In addition, the article reported healthcare could be more considerate to the needs of older persons with a cleft, particularly around dental care and providing information about it.

“There is a need for more qualitative research, information and assistance in this area. What I am seeing and hearing is that many older adults use phones, email and text for communication and get on the internet and YouTube for information and are infrequently involved with social media,” Luci stated.

Luci is a strong advocate and has a passion to improve the quality of life for older adults with craniofacial/facial difference of any kind.

“Acknowledging them and their needs as they age. Letting them know they are not alone and that their peers are out there to share our feelings, and assist this diverse group find a facility that provides the care they require with regard to knowledge about their dental care and consideration of their needs from healthcare providers,” Luci stated.

“We need to reach out to them in a way that works to receive vital and enlightening information and establish a collaborative system for future generations. They deserve to be heard and not hidden. To live a joyful life,”

She volunteers with Smile Train’s Cleft Community Advisory Council, the world’s largest global charity that supports cleft lip and palate, and for the Ensuring Lasting Smiles Act, which would have health insurance cover medically necessary services resulting from congenital abnormalities.

Tim Wholf is director of the Johnson County Department of Aging and Human Services.