Luci’s Story of Triumph

by Luci Capo Rome, RN

Photo Courtesy of Luci Capo Rome.

I’m an older adult born with a complete and severe bilateral cleft lip and palate. My multiple surgeries were completed at age 51. Around age 5, I started wearing a temporary and removable obturator/prosthesis with a bulb on the back and teeth on the front which attached to my existing teeth with wires and rings. It required daily cleaning just like dentures and closed my open hard and soft palates to help me breathe easier, speak, and bite into food without accidentally swallowing solids or liquids. In 1988, I had pharyngeal flap surgery to permanently close off my missing soft and hard palates. This procedure was one of my hallmark moments during my restorative process. I celebrated with my then prosthodontist by throwing the obturator into the trash! Today, I wear a prosthetic bridge to replace my alveolar ridge, premaxilla bone, and upper front teeth. 

Luci (left) and sister Valerie. Photo courtesy of Luci Capo Rome.

My shocking birth difference brought shame, fear, anger, superstition and embarrassment to my family. They called me a harelip. And my mother was told that something was wrong with her for having a baby that looked like me. There was no prenatal testing done back then and no special baby bottles nipples to assist with my inability to suckle. Initially, a medicine dropper was used for my feeding. My parents had to be careful feeding me because of  my open palates and open asymmetrical upper lip and nose. There was very little support and lack of education for parents and children at that time. My parents and the medical, surgical and nursing personnel did the best they could to see that I received the care I needed. And I’m proud to say that I graduated from 5 years of speech therapy at age 10.

I endured tragedy at a young age. My sister and only sibling who also had the same congenital issue, plus cerebral palsy died at age 3 when I was 4 due to a respiratory illness. My parents divorced two years later. 

I played catch-up with care as a young adult in order to receive the most updated general dentistry, maxillofacial, orthodontic, prosthodontic and surgical procedures available. Years later, my mother opened up about taking the blame for my birth anomaly. I assured her that it was not her fault and to please release her guilt; I was a strong person, who has never given up.

In 1983, I co-founded, “Looking Ahead,” a support group for those affected by cleft lip and palate with two other women. The group lasted for two years and it was one of the best experiences of my life! Knowing I made a difference in the lives of others affected by cleft lip and palate/facial difference was another milestone for my own healing.

Along my journey I was bullied, snubbed and mocked by both children and adults. People told me I couldn’t fulfill my dreams because I wasn’t smart enough. When I was told by a nursing professor “you can’t do that,”  I said, “watch me.” I knew my facial difference had nothing to do with my intelligence, so I kept going back to school to pursue my education. Being persistent helped me reach my personal and professional goals. 

My professional journey spanned over 47 years. I’, a retired RN and an advanced practice nurse/nurse practitioner with a master’s degree and post master’s certificate specializing in family practice, internal medicine, psychiatric mental health, and other areas of health care.

My low self-esteem, fear or rejection and shame for my appearance as a woman made relationships a challenge. I walked with my head down for years.  Through counseling, supportive friends and family I was able to gain self-love, respect and acceptance. Today, I am with the love of my life, my husband Dick Rome! I continue to work on my healing from shame, anger and anxiety with activities that I love such as writing, poetry, dance, yoga, travel, cooking and baking, being in nature and spirituality. I also enjoy being an advocate for the cleft/craniofacial community.

I have written over a hundred poems and a few have been published. In 2020 my memoir, Lucia’s Story: My Imperfect Beauty, was published under my pen name Bella Lucia. It is written in devotion to and respect for facial difference. 

My story evolves into one of hope, triumph, inspiration, self-empowerment, self-love, self-acceptance and self-respect. “Never give up. Keep going. Practice integrity. Be true to yourself,” is what I tell myself. I dwell in possibility! I release the negative. My motto is “You have the power to choose what to accept and what to let go.” This leads to happiness.

Being born with a cleft has impacted my life in many ways. It has made me a better healthcare provider. As a nurse practitioner, I was more empathetic toward my clients because I know what it’s like, both as a provider and a patient. My cleft/craniofacial difference made me a stronger and more resilient person. I enjoy being different! I feel that I have been a role model, remembering that I am a person with a cleft. My cleft does not define who I am.

My hopes for the cleft community are increased awareness for all cleft affected individuals from birth throughout the rest of their lives. I hope that bullying will decrease with education and networking with the general public. I hope we remind our communities that we require specialized health care such as surgery, speech therapy, orthodontic and prosthodontic care and counseling throughout our lives. I hope that care doesn’t stop at age 18–our unique needs are functional, not cosmetic. I hope to raise our self esteem with advocacy so we can be who we want to be and go about our lives.

I’ll end with one of my favorite poems that is listed in my memoir:

PRETTY LADY

I am a pretty lady.

I know that it is true.

My smile is very bright,

Shining through and through.

I am a pretty lady.

I feel so warm inside.

My eyes glow with happiness.

It feels so right.

I am a pretty lady.

I’ve got so much class.

As I walk so tall.

You may stare as I pass.

I am a pretty lady.

With a style of my own.

I know that I am different.

A rhythm with unique tone.

I am a pretty lady.

You need not tell me so.

I’ve got a special look that only belongs to me.

And feeling oh so pretty, has set me free.

Free to feel good about myself.

Free to live in peace without a doubt.

About the Author

Luci Capo Rome is a retired advance practice registered nurse with over 47 years of service. She earned a diploma in professional nursing from Braddock General Hospital School of Nursing in Braddock, PA, a bachelor of science degree in nursing from Duquesne University, Pittsburgh, PA, a master of science in nursing, family practice nurse practitioner at the University of Pittsburgh, Pittsburgh, PA and a post-graduate certificate as a psychiatric mental health nurse practitioner from the University of California, Fresno. A pioneer, she is recognized as the first nurse practitioner in Cass County, Missouri and the first nurse practitioner at San Joaquin Behavioral Health Services in Stockton, California.