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Cleft-Craniofacial Community Stories

Haley’s Story

Hi. I’m Haley. I’m 20 years old, and I’m a cleft palate kid. Wow, I don’t think I’ve ever stated like that, ever, in my life! It makes me feel like I’m in some AA meeting from the movies. Honestly though, I only had to say such statements to doctors when I was growing up. More of my story though: I was born with a cleft palate, and by that I mean almost none at all. The only thing physically was my profile, which is somewhat recessive. I used to think I wanted to have that corrected, but now, I really think I’m going to be just fine with it for life.

I had so many surgeries on my palate, ears, and mouth growing up that I don’t even know how many I had. Luckily, I was born in the wonderful city of San Diego, and the cleft palate group did wonders for me. I can’t really say I remember being a toddler, but I do remember going to lots and lots and LOTS of speech therapy. The doctors told my parents I would talk like Tweety Bird for the rest of my life, but that was wrong. Though I do sound a little childish, it’s nothing close to Tweety. I continued speech therapy up through middle school because I had a problem pronouncing hard consonants without mumbling or making a guttural sound, but by the time I got there, my speech pathologist just pulled me out of class because she knew I liked the break from class, not because I still needed it. Growing up I had multiple sets of tubes, once again I don’t know how many – I think it was in the five to seven pairs range, but don’t quote me on that. The tubes were never a problem. The only thing I remember about them is that I had to have very frequent hearing tests up through about middle school, and one time my hearing (which had been improving) suddenly dropped off. My mother cried the whole way home and explained to me that I was going deaf in one (or both?) ears. I was like, “whatever Mom, I can hear fine.” She kept crying, and the next day my ENT called back to say they found out the machine was broken, and in fact I was fine.

When I was in first grade, my family moved to Evansville, Indiana, and I went to school there until graduating high school. Growing up in Evansville I always had my classmate Tony with me in speech therapy. Tony was the gross kid—ate his boogers and all kinds of nice stuff like that, but he was also a cleft palate kid. It was nice to have another classmate dealing with the same thing I was. Having Tony around made me feel like I was normal, and I never felt the need to feel sorry for myself. Once I got to high school, there was yet another girl in my grade, and two or three more in my school (of 1,600 students) that had dealt with clefts. Most people didn’t know of my condition, but most of my friends did. It wasn’t a secret, but there was no use to tell everyone—it would have been like telling the whole school that you had cereal for breakfast. No big deal.

Looking back on my younger years there were a few times I was embarrassed but nothing that I don’t look back on and think is completely silly. For instance, I once sneezed out a noodle I had just put in my mouth while eating a meal with my friends because of the small hole still left in my palate. I sneeze a LOT, because due to that hole, my nose is exposed to so much more than most people’s. I always had to wear earplugs, and I could never swim deep because of the pressure. Despite this, I was on the swim team and was even a lifeguard at the pool. The pressure thing also goes for airplanes or driving with inconsistent elevation. I’m always prepared for tears from the pain. I’ve tried everything under the sun: medicines, trying to pop my ears, hot cups, exercises prior to flying, and more. It doesn’t work, I no longer waste my time but instead just try to make sure I have a pillow and can get comfortable. My orthodontist had to invent an appliance for me since he had never seen a situation like mine. Of course I had to get braces, and I still have two wires in my mouth that will probably be there forever since my mouth is so small. Overall, nothing was a big deal. Looking at pictures of myself with armguards when I was a year old is the most daunting thing for me because it is hard for me to accept that my condition was bad enough that I needed to be restrained from touching my face and mouth for a period of time. And there are plenty of pictures from that time—my parents thought it would be a great time for a trip to Disneyland so there are pictures of me with those armguards in front of all sorts of interesting things.

Presently, I am a junior at Purdue University. I’m majoring in engineering and loving that I’m actually being challenged, regardless of my report card telling me that I’m now just average. My little sister just graduated high school, which really lets me know that I’m pretty much an adult now. The only thing I wish I could have changed about my childhood is knowing that I could’ve had a chance to get a scholarship for my tuition had I know that their are cleft foundations that offer stuff like that—before now, I didn’t even know there were such foundations. My parents say the reason I did so well was because of the cleft palate team that worked on me when I was an infant. They must have been amazing, and I hope I can meet them someday so I can open my mouth and show them my palate—like I show all of my friends when they ask to see it—to show them how much they helped me live a normal life.

Last Updated: Aug 31, 2007