People with cleft lip and palate have life-changing opportunities. Support them | Opinion
I am a retired professional nurse and nurse practitioner born with facial difference — a complete bilateral cleft lip and palate, which consists of splits or gaps on both sides of the upper lip and the roof of the mouth known as the palate. As an active member of the cleft community, participating in events such as the annual Cleft Con convention hosted by the nonprofit Smile Train has been a life-changing experience. This event is an open and unbiased community platform for individuals with a cleft and their families to come together to share experiences and learning, and to inspire one another.
When I was growing up with cleft, there was very little support and lack of education for parents and children. Prenatal testing was not done and there were no special baby bottles to assist with my inability to suckle. In addition to this lack of medical support, bullying and anxiety were very prevalent for me as well. Events and organizations such as Cleft Con and Smile Train have helped me to gain confidence and celebrate my differences.
Smile Train, which is celebrating its 25th anniversary this year, holds a special place in my heart. I have been an active volunteer since 2020, as well as a member of its Cleft Advisory Council and Leadership board. The organization’s commitment to providing free cleft surgeries and comprehensive cleft care, such as speech therapy, dental and orthodontics, nutrition services and hearing care has transformed the lives of numerous individuals worldwide. In fact, Smile Train supported its 2 millionth free cleft surgery this year.
Because of my passion for cleft advocacy, one of the key roles I am honored to fulfill is serving on Smile Train’s Cleft Advisory Board. This board plays a crucial role in ensuring that the voices and needs of the cleft community are heard and addressed. As a cleft-affected adult, I use this platform to advocate for other cleft-affected individuals who tend to feel isolated at times. I also speak on the importance of health care becoming more considerate to the needs of older people with a cleft, particularly with dental care and providing information about it. Creating an advocacy network for the older cleft community worldwide that works for everyone is the goal. More qualitative studies need to be generated.
Health care, dental needs are lifelong
Members of this unique population need to be seen and heard to lead happy lives, feeling like they belong in the world, not alone and isolated from the community. Providing valuable information to benefit them is a means to connect as we share our stories and celebrate who we are. We must remember that necessary care for those affected by cleft lip and or cleft palate is ongoing throughout one’s lifetime.
My ongoing goal is to be a voice for this distinctive community, putting information out there. I have communicated with AARP both nationally and in Kansas. I have spoken to the commission on aging in Johnson County and had an interview published with the Johnson County Area Agency on Aging. Additionally, I have a published memoir called “Lucia’s Story: My Imperfect Beauty” under my pen name, Bella Lucia. The book talks about my inspiring and triumphant tale and my personal and professional achievements.
I am thrilled to be participating and advocating for my objective further in my third live upcoming Cleft Con in Houston. I will be speaking on two panels titled “Amplifying Voices: Advocating for the Facial Difference Community” and “Love Beyond Appearance: Navigating Romantic Relationships with Facial Differences” with my husband.
This event exemplifies empowerment and unity within the cleft community, bringing together a wide range of people who share similar journeys of overcoming challenges associated with being born with a cleft. Beyond the educational aspect of learning more about clefts, Cleft Con celebrates resilience, diversity and how everyone has a story worth sharing.
My journey with Smile Train has been deeply rewarding, allowing me to witness firsthand the positive impact of access to quality health care on people’s lives. Looking ahead, I am optimistic about the future of the cleft community. Events such as Cleft Con serve as reminders of our collective strength and inspire us to continue advocating passionately for those who may not have a voice.
Smile Train, my friends, a loving husband and meeting people from different backgrounds through Cleft Con and elsewhere have helped shape me into the confident woman I am today. I am committed to ensuring that all people affected by cleft has the resources and support they need to thrive. Together, we can continue to celebrate our differences and build a future where everyone has the opportunity to smile confidently.
Luci Capo Rome is a poet, podcast speaker, writer, author and retired advanced practice registered nurse and nurse practitioner. She lives in Kansas City.
