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Cleft-Craniofacial Community Stories

Claire Crawford

My Story
Claire Crawford

My name is Claire Crawford, I’m 14 years old, a freshman in high school, and I’ve never had a soft drink. Yes, I’m afraid you read correctly, I’m a teenager who doesn’t care for soda (much to my parents’ liking, I might add). But what I want to share with you is that aside from all that, I was born with a cleft lip and palate. I’ve had 9 surgeries—that’s only five years without one—and it all started when I was three months old. Not all have been directly for my cleft, but all have been related. My most recent one was when I was in fifth grade and my next (and probably last) should be sometime next year. Aside from my surgeries, I’ve had many seemingly fascinating contraptions in my mouth, according to my friends, at least, and I currently have braces, which I’ve had for more than five years. During these surgeries, it has been important to have my orthodontist and current doctors recognize my feelings of fear and anxiety and send me a card or check in on me! Also I’ve had family and friends share their support and concern.

When I was younger, the most important part of undergoing surgery was having the brand new stuffed animal that was given to me beside me at all times—it was a crisis if I didn’t have that—and toys brought by visitors were within playing-range. As vital as this seemed, however, I happen to know that it really meant the most to be surrounded by people who loved me. Those times, as funny as it sounds were actually some of my happiest: my facial features were becoming more normal and functional, everyone I knew came to visit me, some brought gifts or cards, and I was waited on hand and foot! It wasn’t so bad after all!

Not to say it wasn’t hard. I remember feeling anxiety, fear, and being so apprehensive! It frightened me to have tests before surgery, to have blood taken, and then to have to put on a hospital gown….I knew what all that meant! When I was young, mom would just pick me up at school like any ordinary day, and I would be taken to the hospital and have surgery the next day! However, as I got older, the anticipation for months prior to the procedure eventually led to a type of morning anxiety during late spring, the time most of my surgeries took place.

Despite this realization, most of my school career has been pretty normal considering all the interruptions for surgery. I wasn’t left out or made fun of by my peers because of my cleft…it was rarely noticed. I remember one instance in which one of my teachers asked if I had a cold (because of the redness of the scar above my lip) and at such a young age, it affected my confidence and my feelings got hurt. I also remember a couple of friends asking if I had a nose bleed when my scar was in early stages of healing. That time, however, I was quite proud to show off my one-of-a-kind scar. None of my friends could boast that! My friends still think it’s odd that I don’t like soft drinks, which I believe is a result of having a small opening in the roof of my mouth leading to my nose where the carbonated drinks fizz and feel very uncomfortable.

I have always liked having stuffed animals and toys around, but having a stuffed animal in surgery has been particularly important. I remember one gift given to me that stood out when I was preparing for surgery: a plain, simple brown bear given to me by the hospital at which the procedures were to take place. The staff was probably just being nice, providing entertainment for my short stay at their hospital, but to me it was comfort. In that bear, I saw a friend and companion that would endure any pain that I did or any fear that I had. It was something to hold, take care of, and love. Also, because the hospital gave it to me, the bear represented the care and precision with which the surgeons would perform their jobs. It was a material anchor for my feelings. Since then, I have received other stuffed animals pre-surgery, and each serves the same purpose.

I think all children should have this feeling of safety and care going into surgery, and the Cleft Palate Foundation is just the organization to provide this. The cleft teddy bears that can be purchased through the foundation can give children comfort and an anchor. Hospitals can even give these bears to children as mine was given to me, or individuals can give them to children they know.

I have been a Girl Scout in Starkville, Mississippi since I was six years old, and one of the final requirements of a Girl Scout is the Girl Scout Silver Award. I had already been doing some research about how I could help other cleft lip/palate children when I began my work on this award, and when I saw that a requirement for the award was helping others and giving back to the community, I knew just the thing to do. So, since August, I’ve been collecting donations from my community, friends and family to purchase some cleft teddy bears from the Cleft Palate Foundation to give to a children’s hospital in Jackson, MS, cleft palate teams, and to individuals I know who have a cleft lip/palate. The cleft teddy bears have a tag that includes resources for finding out more about clefts, including the Cleftline telephone number and website with information and resources along with stories like this one that give hope to parents, children, and teenagers. This organization is here to let you know that having a cleft is not a tragedy that will be suffered forever, but an obstacle in life that can be overcome. My cleft is a part of me, not what defines me.

You might be thinking that I’m missing out by not being able to enjoy a soft drink, but I feel that I’m missing out if I’m not working to improve the lives of children like me. It’s such a great feeling (unlike carbonated drinks)!

Last Updated: Jul 24, 2006