“Growing up with a cleft lip and palate has required me to develop great reserves of patience and resiliency. It has been an 18-year journey so far and my journey continues. While I have been blessed with excellent outcomes, not everything turned out great on the first try. I went through two rounds of head gear, and when those results were still not optimal, extra surgery for my jaws was necessary. I have had scar, lip, and nose revisions. I will always have a missing tooth and am ineligible for an implant due to insufficient bone density, despite an alveolar bone graft. Social situations, such as lunch at school, where I needed to remove my dental bridge with a prosthetic tooth to eat and expose a big gap in the front of my mouth, were awkward. When my friends were done with their braces after two years, I was still wearing them after 7 years and well into high school.
Of the many operations I endured due to my cleft lip and palate, jaw surgery was the most frightening because I was unable to speak, eat, or sleep like a normal teenager. My jaws were effectively tied shut with rubber bands for the entire summer before my junior year of high school. I was fed liquids through a syringe for weeks before I could progress to soft foods. While my friends had summer jobs, vacations, and social get-togethers, my family and I were focused on pain management, adequate nutrition, and multiple medical follow up appointments. It was not the first time, nor would it be the last, that school holidays were used for medical procedures.
I first became aware of my uniqueness when children at school would ask me what was on my face when they were curious about the raised scar under my nose. Thicker liquids like chocolate syrup or pasta sauce occasionally leaked embarrassingly from my cleft impacted nostril. I was shocked and hurt when I heard kids on the bus talking about the girl with weird lips and realized they were talking about me. Despite clefts being the most common birth difference, no one in my large extended family or my elementary school had one. However, with my parents help, I learned how to respond to their curiosities and use it to explain the condition.
A big turning point for me was meeting a boy with a repaired cleft lip in my group of young campers when I was a summer camp counselor. “Oh, you are just like me!” he exclaimed when we were first introduced. We talked about our bone graphs, hearing tubes, operations, and doctor’s appointments. I could tell immediately how relieved he was to have someone to relate to. I felt the same way. We both realized that despite the challenges, we were able to lead normal lives and have fun at summer camp. We could help each other and share a special bond created by our shared differences.
My birth difference has shown me that you have to look past everyone’s surface to see their true self and understand that everyone has closed doors. My difference has taught me to be mindful of this, and I see examples everywhere. Take, for instance, the finch: a fragile, tiny bird that carries one of the loudest voices in its feathered species. It is amazing how powerful energy comes from such an unexpected host. I carry this idea with me whenever I interact with anyone, but especially with those who may feel that their voice does not match their life or their outward appearance, their inner self. It has led to my long-term involvement in two organizations that have been particularly formative for me, Smile Train and Our Minds Matter. As a Smile Train teen ambassador, I speak on panels, host events, and raise funds. To reduce stigma and create community, I have posted my story for the whole world to see.
A cleft lip and palate is so much more than a scar: it is a journey with nutritional problems, speech and hearing therapy, and dental and mental healthcare. The importance of addressing the mental health component of living with a birth difference drew me to the Our Minds Matter student organization that seeks to promote mental health literacy, destigmatize mental health topics, and support high school students. I have attended training and leadership conferences to bring that expertise back to my school community as president of my school’s club. It has helped me build my self-esteem and be compassionate with myself and others.
I never wanted to be defined by my cleft, but by embracing the experience I have grown tremendously as a person and found my voice and my passion.
Growing up, I was curious about the molecular mutations that caused my birth difference. I knew I wanted to learn more about the genetic and environmental causes of cleft lips and palates and hopefully providing the same comfort to people undergoing medical treatments like me. I was aware of how lucky I was to have access to truly accomplished surgeons and specialists and the difference their expertise, sacrifices and commitment made in my life.
Biology has become a source of discovery and excitement for me. In class, I was fascinated by viewing the fundamental units of life with each microscopic slide. I have engaged in the biology, chemistry, anatomy, and environmental courses and clubs offered at my school to prepare myself for future study in the field.
Despite our differences, humanity is united by our biology. During the pandemic, it was the world’s scientists and their groundbreaking innovations that came to the world’s rescue. After witnessing the worldwide efforts made by the scientific community, I wanted to pursue opportunities to immerse myself in the field. When I completed an online pre-college course in molecular biology at Columbia (the same summer I was recuperating from jaw surgery), it confirmed my motivation to pursue biology as my major. I feel I have always been attracted to biology, but with every class and opportunity I have had, I find myself falling deeper in love with biology as a way to help everyone. I also believe that my experience as a patient on so many occasions and in different settings could help me be an excellent doctor with unique and useful insights.
During my first family trip to New York City as a sixth grader, it occurred to me that no one in that diverse city teeming with people would ever stop to take notice of my difference. It was liberating. I was already starting to think I may want to be a doctor, so decided to look up universities in New York City. I discovered Columbia University and started dreaming big. They have an excellent pre-med program, and I was excited to learn the Medical Center is researching the genetic causes of cleft lips and palates. I am thrilled to have been accepted and will enter Columbia as a freshman in September 2023. I intend to take full advantage of all the educational opportunities that will be available as I pursue my aspiration to be a doctor. I can feel my dreams starting to materialize. My experiences with my cleft have likely played a large role in helping me stand out – in the best way!
I hope to devote my life to providing the same comfort to people undergoing medical treatments like me and join the medical community that has helped me since I was born. I have benefited tremendously from talented surgeons, orthodontists, counselors, and so many others. I hope to research the potential genetic and environmental causes of cleft lips and palates to reduce, and even prevent, the possibility that someday my own children, and future generations of all cleft-affected persons, might face the same challenges.
I am so impressed by the tremendous support in the cleft community and the ethos of paying it forward. I will never be able to thank my own doctors adequately for the help they provided and the difference they made in my life. I am sure they, in turn, have benefitted from the pioneering work of Drs. Randall and LaRossa and the support of the American Cleft Palate Craniofacial Association. The best way to express my gratitude is to follow their example and dedicate myself to making a positive impact in the same community. I am truly honored to receive this incredibly generous scholarship. It will provide a significant contribution towards my educational expenses, and I am very grateful for the support and encouragement from this incredible community.”
Congratulations to Niamh! As the Honors recipient of the Randall LaRossa College Scholarship, she will receive $10,000 toward her education. Learn more about ACPA’s college scholarships.
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