Countdown to Surgery: Ashleigh’s Cleft Story
My name is Ashleigh Baker and I have been a Cincinnati Children’s patient my whole life. I was born with a unilateral cleft lip and palate and I have been patiently waiting my tenth surgery which is finally tomorrow!
As if it isn’t hard enough to transition to college life I am currently battling constant colds and headaches associated with a severely deviated septum which blocks off my nasal cavity and makes it hard to breathe. The surgery (called a Septoplasty) will correct the deviation. It’s been part of my life for a year now and I have counted down the days to my surgery. I cannot wait to breathe out of my nose again.
This will be the second time that I have had to have my nose reconstructed. The first time it collapsed as a result of trauma from my LeForte Osteotomy, a jaw reconstruction surgery to move my upper jaw forward in alignment with my lower jaw. I was 15 years old at the time and it was a rather predictable complication. I was almost prepared for it.
This time, however, it was a struggle to admit to myself that my nose had deviated again. My last surgery (a Rhinoplasty) was supposed to be my final surgery so I didn’t want to admit there was another problem. But as it has become harder to breathe, and sinus infections have become more common, it is hard to deny that there is something wrong.
Once I admitted it to myself, I called my surgeon. It was such a relief to walk into my appointment and have him recognize what was wrong before I even specified anything.
It has been a long wait for this surgery. Between struggling to get insurance coverage and then finding a time that worked with my college breaks and my parents’ work schedules, it feels like it’s taken forever to get to this point.
It is sometimes an extremely frustrating endeavor to get insurance to cover these operations. It is a constant battle for me to get the coverage, no matter which insurance company we are with at the time. They all try to deny reconstructive surgeries. The delay was really disappointing because there was a small window last spring in which I could have had my Septoplasty but because it took so long to get insurance coverage I have waited an extra six months. At least now it is on the books and official and we have it covered! Hopefully this one will be my last. But it scares me to use the word last. I do not want to jinx it.
My journey at Cincinnati Children’s has been full of ups and downs and through a lot of my time I felt like I was the only person with a cleft. I would see other patients with clefts when I was in the hospital but I never really talked to any of them. It was hard growing up so different from my peers. As a six-year–old, not being allowed out to recess because I just had bone grafting done, being teased, and mocked by other children simply because I looked different, was all traumatic for me.
As I have gotten older I have become extremely passionate about reaching out to other kids with clefts.
In 2006, Riley Children’s in Indianapolis and Cincinnati Children’s partnered to establish Camp About Face. It’s a regional camp open to kids with craniofacial anomalies. I was one of the lucky kids picked to attend that first year of camp and from that moment on I was not alone.
I met my best friend at camp and I now have a “crano” family as we call ourselves. Once I saw the difference it made in my life to know others who were like me, I wanted to give that to other kids.
Now I work through Facebook, meetings, and events to reach out to other kids and families who are also patients at Cincinnati Children’s. I hope that one day our network will be large enough that no family will ever feel alone in facing surgeries, no kid alone in facing social obstacles, and no teen alone in facing decisions about continuing surgeries.
I have a passion: reaching out to others and letting them know that “what makes you different, makes you beautiful.”
Having a cleft is not a diagnosis, in many ways it becomes a way of life. Mine taught me at a young age that looks are not as important as the world says, that the best way to counter teasing is to teach and share. I have learned to be strong in myself and I want other kids with clefts to be strong in themselves too. My cleft does not define me, but it is a huge part of me.
Surgery is tomorrow and I’m thrilled it’s almost here! I never thought I’d be in college and still having problems related to my cleft – but with a little luck this will be my last. I’ll let you know how it goes.