My Journey with a Cleft Lip and Palate
A not so brief summary
I was born with a unilateral cleft lip and palate. Fortunately, I was born in a place where proper treatment was available to me and my family. I was 10 weeks old when I had my first surgery to initially repair my cleft. This was just the very beginning, children born with clefts require treatment throughout childhood and often into adulthood. When I was younger, I had difficulties speaking properly which is very common in children with clefts even after reparative surgery. I started speech therapy when I was around 18 months and continued all the way through elementary school which was when I was about 11 years old.
My second surgery to fix my cleft lip and palate occurred when I was 5 years old. Even though it happened over 10 years ago I have a clear memory of playing with a puzzle toy that was part of the wall in the waiting room of the hospital. I remember having to wear arm cuffs after my surgery to avoid me touching my lip because I was still too young to understand what was happening. Around the same time, I started Kindergarten, I also started seeing an orthodontist. Before I finished 1st grade I had started my first round of braces after having an expander for over 6 months. I had that round of braces all the way until the end of my 3rd-grade year. I remember pretty vividly always being the youngest in my orthodontist’s office.
Throughout elementary school when I was in the process of losing my baby teeth, I remember having pretty bad anxiety about my teeth. I oftentimes had nightmares where all of my teeth fall out and when a tooth would get lose I would be so scared of I can’t even recall what. Most of my fear came through my little tooth, which was the tooth that was the most impacted by my cleft. It is the tooth immediately to the left of my two front teeth. That baby tooth was so small, but it was loose for a very long time. We were never sure if it would fall out by itself, and it never did. Towards the end of elementary school, I had it pulled which was honestly one of the most anxiety-filled moments of my life. I have such a high pain tolerance for everything, except anything relating to my mouth because of my experiences with my cleft.
Around the time that I started middle school, I began to have trouble breathing which we assumed was relating to my cleft lip/palate. I went to the ENT (Ears Nose and Throat Doctor) and they saw that I had slightly swollen adenoids, but what was causing most of the trouble was a severely deviated septum. My left nostril was almost completely blocked off which was the main contributor to my difficulties breathing. In April of my 6th-grade year, I had surgery to repair my deviated septum and to also remove my adenoids. What I remember most about this experience was how much I hated it. I had always been an extremely active kid and about a year before my surgery, I had started gymnastics which I loved along with basketball, running (which I hate now, lol) and soccer. I had to be out of all activities, including PE class for 6 weeks. I had to leave class early for fear of getting hit in the nose during the passing period. I hated leaving class early and having to use the school elevator (because the stairs were too busy) because I felt like it drew attention to me.
Right before 7th grade, I got braces again. My teeth were not even close to straight because the first round had mostly been for aligning my teeth and my jaw overall. I never really minded braces, however, I always hated the appointments because my doctor would have to tighten my braces. This tightening process was always difficult for me because my teeth, especially my top front teeth are extremely sensitive because of my cleft, so these appointments were never pain-free.
At the start of freshmen year, we started planning for my bone-graft surgery. This would be a procedure where a bone from my hip would be removed and transplanted into my jaw, more specifically the area of my cleft. This procedure was done to provide more structure and support for my lip which will be important later on in my life. Through the surgery, we also hoped that a tooth implant would be possible. In the winter, about 2 months before my surgery would take place I had my adult tooth removed that was most impacted by my cleft. The tooth never came down properly and it didn’t have a strong enough root and was too poorly shaped to keep it. So we decided to remove it and hope that an implant would be possible in the future. Throughout my freshman year, we met with my doctor multiple times who would perform my surgery. We chose to have it done at Shriners Children Hospital of Chicago, which is where my doctor performed the majority of his surgeries.
Since I was a lot older (15 years old) I remember a lot more about this surgery. I remember how painful the recovery was, especially since my hip was impacted as well because that was the host site. Just like in 6th grade, I had to be out of sports and other physical activities for 6 weeks in order to recover. I had to miss the start of the soccer season, which was pretty disappointing to me. I had a lot of support from my friends and family throughout this most recent surgery, so for that, I am very thankful.
Towards the end of the 2019 summer, I got my braces taken off. This was very meaningful to me because it signified the beginning of the end. My teeth certainly aren’t perfect now, but they are straight and pretty great, especially considering the severity of my cleft. I am very thankful to my amazing orthodontist for this. A few days after getting my braces off I received a flipper that contained a fake tooth that is on what is similar to an expander. When I have my flipper in, people are often unable to tell that I was ever born with a birth defect. We’re not sure what type of fake tooth we’ll use in the future because a flipper is usually a temporary situation. We learned shortly after my most recent surgery that an implant wouldn’t be possible because even with the graft surgery there is still not enough structure to support an implant. It is likely that I will still need another surgery to help the structure of my jaw, but it depends on how I grow.
Around the time that I got my braces off, I discovered the Smile Train student ambassador program while scrolling through Instagram. I decided to apply because I always wanted to be able to give back to children like me, but aren’t fortunate enough to receive proper care for their cleft lip and/or palates. When I received the information that I was a Smile Train student ambassador in late July/early August I was so happy and looked forward to an exciting year filled with new learning opportunities. Currently (December 2019) I have already hosted my educational event and am in the midst of planning my first fundraising event. I am planning a tie-dye party that will take place at the beginning of February. I also have other events that I am beginning to plan, such as a trampoline park fundraiser among other things!
Although this journey has been difficult, I am forever thankful for it because it has taught me so many things about myself and the world around me. I am forever grateful for my amazing doctors and nurses who treated me throughout my surgeries and other treatments. I am also very thankful for the new path of my journey which is being a Smile Train student ambassador!
Thanks for reading,
Grace Murphy
"Be the reason someone smiles today"
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