Check Out Bella Lucia/Luci Capo Rome’s Story

Today we’d like to introduce you to Bella Lucia/Luci Capo Rome.

Thank you so much for sharing your story and insight with our readers. To kick things off, how did you get started?

I live in Olathe, KS and I am an older adult with craniofacial difference; defined as an anomaly of the face and or head. It can be congenital, genetic, spontaneous and/or acquired from disease or trauma.

Here is my story: I was born in 1951 with a congenital, severe and complete bilateral cleft lip and palate. This included the absence of my hard and soft palates and missing bone where our front teeth are inserted and a distorted nose. My upper lip was totally open on both sides.

My history includes many events such as thirty-four successful and unsuccessful surgeries from birth to age 51, speech therapy, intensive dental care that included oral, maxilla-facial and prosthodontic procedures. The needed care for those affected by cleft lip and or cleft palate is ongoing throughout one’s lifespan.

My shocking birth difference brought shame, fear, anger, superstition and embarrassment to my family. My mother was told that something was wrong with her to have a baby that looked like I did. Not much was said back in the 1950’s. The term “hare lip” was spoken, which is considered a derogatory term, today. There was no prenatal testing done back then and no special baby bottles with nipples to assist with my inability to suckle. A medicine dropper was used initially for my feeding. Being careful with my open palates and open asymmetrical upper lip and nose was important for my feeding.  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 care I needed. I am proud to say that I graduated from 5 years of speech therapy at age 10.

I endured tragedy at a young age. My only sibling/sister 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 2 years later. 

Starting circa age 5, I wore a temporary and removeable 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, assisting me to breathe easier, speak, not aspirating food and liquids and to bite into food. My palatoplasty and pharyngeal flap surgery which closed off my missing hard and soft palates permanently, was completed in 1988.  This procedure was one of my hallmark moments during my restorative process. I celebrated with my then prosthodontist by releasing the obturator into the trash! Today, I wear a prosthetic bridge to replace my upper, front jaw bone, scar tissue and lack of front teeth. I must wear this prosthetic bridge for the rest of my life that must be replaced about every fourteen years. It assists with my eating, drinking, speaking and my self-esteem.

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 am a strong person, who has never given up.

In 1983 I formed a support group with two other women for those affected by cleft lip and palate called “Looking Ahead.” It lasted for two years. We did have one man. 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/craniofacial 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”. Remembering that my craniofacial difference has nothing to do with my intelligence, I kept going back to school to pursue my education, being very persistent. I reached my goals personally and professionally.

My professional journey spanned over 47 years. I am 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. I am a pioneer.  In 1994, I was recognized as the first nurse practitioner in Cass County, Missouri and acknowledged by the newspaper, The Kansas City Star in 1995 as a nurse practitioner leading in healthcare reform. In 2008, I was acknowledged as the first nurse practitioner at San Joaquin Behavioral Health Services in Stockton, California. 

Relationships became a challenge as my self-esteem was low for many years with fear of rejection and feeling shame for my appearance as a woman. I walked down the street 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 have written over a hundred poems and a few have been published. In 2020, my memoir called Lucia’s Story: My Imperfect Beauty was published. This memoir is written in devotion to and respect for facial difference. My pen name is Bella Lucia. My website is https://bellalucia.

My anecdote evolves into one of hope, triumph, inspiration, self-empowerment, self-love, self-acceptance and self-respect. My self-talk is to” Never give up, Keep going, Practice integrity, Be true to yourself“. 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 made me a better healthcare provider. As a nurse practitioner, I was more empathetic toward my clients. Knowing what it is like being on both sides as provider and as 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 new-born throughout the rest of our lives. That bullying be lessened with education and networking with the general public. Reminding our communities, overall that we require specialized health care such as surgery, speech therapy, orthodontic and prosthodontic care and counseling throughout our lives. It doesn’t stop at age 18. Our unique needs are not cosmetic, but functional. Raising our self- esteem with advocacy so we can be who we want to be. Going about our lives.

In addition, I am an advocate for individuals of all ages who are cleft affected and a current member of Smile Train’s Cleft Community Advisory Council.  Smile Train is the largest cleft-focused, charitable organization providing many procedures and necessary care in 90 plus countries and locally. Check out their website: www.smiletrain.org. I am also involved with My Face, another organization that supports the craniofacial community. Their website is www.myface.org. Lastly, I am  also  involved with the American Cleft Palate Craniofacial Association(ACPA). Their website is acpacares.org.

My mission is to assist other older adults with craniofacial difference to receive support from the cleft community and beyond. I have been doing research and found only one inclusive article from The Cleft Palate-Craniofacial Journal published in 2015. 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. In addition, it was mentioned that healthcare could be more considerate to the needs of older persons with a cleft, particularly around dental care and providing information about it. Many participants in the study felt ignored because of age. I also pursued more articles that emphasize other issues such as altered hearing that is ongoing for those with cleft lip and palate and during aging.

My goal is to put information out in the community and the world for older adults with craniofacial difference. There is a need for more support in this area as well. What I am seeing and hearing is that many older adults who include many of my friends and acquaintances use phone, email and text for communication and get on the internet and YouTube for information and are infrequently involved with social media. The use of TV, magazines, journals and books/e-books/audiobooks are prominent. Here is some information that I have found regarding older adults: use of Facebook is about 50 percent and use of Instagram is about 13 percent; use of YouTube is about 49 percent.

Being an advocate for the cleft affected older adult, I have started communication with AARP (The American Association of Retired Persons) and I am planning to submit an article for their magazine and their bulletin citing resources such as Smile Train, My Face and the ACPA (The American Cleft Palate, Craniofacial Association).  AARP is a great organization. Their magazine and bulletin are sent to many people around the country. I have also contacted the NCOA (The National Council on Aging) and my local county older adult community.

Social media is a huge platform that would benefit these individuals if they want to join. If not, we need to have other means for them. Another thought is that their grandchildren may possibly assist them with getting connected to social media. In addition, it would be beneficial for the font to be larger and those creators of  APPS and software programs make the it easier for older adults’ use of these programs.

As a successful and compassionate, retired advanced practice professional nurse who is cleft affected, I would be delighted to reach out to other older adults who are also affected, having facial/craniofacial difference with an informative article, video and or a live presentation and let them know that they do not deserve to be alone and isolated from the community. These resources would be filled with valuable information to benefit the older adult community; a means to connect with them as we share our stories about craniofacial difference and celebrate who we are! 

My passion is to improve the quality of life for those older adults with craniofacial difference in the Kansas City area and beyond. Being an enduring voice for them. Having a support system in place for future generations. 

Addendum: My name is Luci Capo Rome, and my pen name is Bella Lucia.

Would you say it’s been a smooth road, and if not, what are some of the biggest challenges you’ve faced along the way?
No, It has not. The Challenges of having craniofacial differences lead to needing to be accepted as intelligent. I need organizations that support older adults not responding to my concerns. I continue to persevere. I have triumphed with my success and want to pass it on to older adults who tend to feel isolated as older adults who do not have craniofacial differences. The main challenge right now is the need for more communication and acknowledgment of this specific population.

Can you tell our readers more about what you do and what you think sets you apart from others?
My professional journey spanned over 47 years. I am a retired RN and an advanced practice nurse/nurse practitioner with a master’s degree and post-masters certificate specializing in family practice, internal medicine, psychiatric mental health, and other areas of health care. I am a pioneer. In 1994, I was recognized as the first nurse practitioner in Cass County, Missouri, and acknowledged by The Kansas City Star newspaper in 1995 as a nurse practitioner leading in healthcare reform.

In 2008 I was admitted as the first nurse practitioner at San Joaquin Behavioral Health Services in Stockton, California. 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. This memoir is written in devotion to and respect for facial differences. My pen name is Bella Lucia. My website is https://bellalucia.net. My anecdote evolves into one of hope, triumph, and inspiration. Despite my challenge of having craniofacial differences, I am proud of all my accomplishments mentioned in my story. My tenacity continues. My self-talk is to” Never give up, Keep going, Practice integrity, and Be true to yourself. “ 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.

Can you talk to us about how you think about risk?
I took the risk of being recruited to Cass County, Missouri, in 1994 from Pittsburgh, PA, to be their first family practice nurse practitioner. Due to a lack of healthcare providers, I fulfilled the need for primary care of women and children. As a pioneer, my risk led to more nurse practitioners being part of a healthcare movement utilizing nurse practitioners. There are many nurse practitioners there today. Risk to me is being adventurous and also being mindful of your action being taken. It is your responsibility. I have also taken other risks by moving to other states and have lived in all 4 time zones in the US.

Pricing:

• I do not sell. My book is listed where books are sold.

Contact Info:

• Website: https://bellalucia.net
• Instagram: https://instagram.com/luciaimperfect
• Facebook: https://www.facebook.com/bellalucia15
• Linkedin: https//linkedin.com/in/bella-lucia-612241205
• Youtube: https://www.youtube.com/channel/UChxUrD1kb9xopxUaZi7GQ