This Month's Featured Family!
Bilateral Cleft Lip and Palate
I am my parent's oldest child, born June 21, 1979. My father was born in the early 1950s with a bilateral cleft lip and cleft palate, so when I was born with the same, my parents already had a bit of an idea of what that meant. They were still surprised, because they hadn't really thought about the idea that I could have a cleft; my paternal grandmother had mentioned it once or twice, but it wasn't something that Mom and Dad had thought about too much.
Because the hospital in eastern Texas didn't know how to deal with a baby with a cleft, I was sent by ambulance to Shreveport, Louisiana. Over the next few years, my lip and palate were repaired. One of my earliest memories is of my pharyngeal flap operation when I was 4 or 5; we went to California for the operation and my parents stayed with Dad's family while I was in the hospital. All I remember is that Dad bought me roses and one of the nurses blew up a latex hand glove to make me a balloon.
I have vague memories of being teased by an older student when I was in first grade. I remember being called "flat face" and getting upset; according to my parents, I frequently came home in tears. By about the middle of first grade, my parents made the decision to homeschool me. With the exception of most
of third grade, I was homeschooled all the way through the end of high school.
Being homeschooled didn't mean my sister Tracy (two years younger) and I were isolated, though. We were just exposed to smaller groups of people--good people who were kind
and cared and never made fun of each other. For most of my school years, my cleft was not a big deal. My scar was nearly invisible, anyway; unless you knew what you were looking for, you
probably couldn't tell I had anything wrong with me. I remember I was well-liked, and we had lots of fun.
Clefts and birth defects began to take a larger role in my family's life toward the end of 1989 and the beginning of 1990. In December 1989, my mother was six months pregnant and I had my bone graft operation, my first major surgery in five or six years. A month later, an ultrasound showed that my brother Joey would be born with spina bifida and hydrocephalus. When he was born, he also had a bilateral cleft lip and cleft palate.
From day one, Joey's spina bifida and hydrocephalus were a greater concern than his cleft. He had his spine closed the day after he was born, and over the next few months there were
complications with his shunt, which drained excess fluid off of his brain. Joey had his lip repaired, and then, when he was 10 months old, he went in for his palate repair.
Joey 's palate repair did not go well. His tongue swelled up and filled his airway, and he ended up in the hospital for three weeks on a respirator. Through it all, he was a trooper, always ready with a smile and happy to see Tracy and I when we visited at the hospital.
That was the last time Joey had any work related to his cleft lip and palate. For the first few years of his life, he continued to have shunt problems and was in and out of the hospital constantly until the age of four. Watching him go through all his operations and the complications that went with them, I realized that a cleft lip and palate like mine were really no big deal. I was the lucky one.
My family grew, too, over the years. A year after Joey was born, Mom gave birth to Nikki, who was not born with a cleft or any other health problems. In 1992, Katie was born healthy, and Bryan was also healthy when he was born in 1994. By 1995, my family had relocated to mid-Missouri, and Joey's medical problems began to even out and hospital visits became more rare.
In 1995, shortly before my 16th birthday, Mom and I visited the craniofacial team in Columbia, Missouri, to have me evaluated and to talk about jaw advancement surgery. After that, I went to the orthodontist who worked with the team. I had worn a partial with false teeth since the age of 10, so you may be able to imagine my surprise when the orthodontist said he wouldn't be able to fit my false teeth in with the braces he wanted to put on for jaw surgery preparation. I was nearly 16 years old and had just moved to a new state and was trying to get to know people: I wasn't about to walk around toothless for two to three years, which I figured would make me the
laughingstock of any group (and make it harder to meet people).
I decided not to have jaw surgery done....and six months later, I changed my mind. We went
back to the cleft team, this time deciding we'd see an orthodontist of our choosing. The new orthodontist we'd chosen suggested we get a second opinion from a team at the children's hospital in St. Louis. At the time he mentioned it, I was skeptical. Then the plastic surgeon in Columbia decided she would have to do the operation in three stages. Because of my
pharyngeal flap, she didn't think she'd be able to intubate me during the surgery--and intubation was very important for the jaw surgery. She wanted to first do an operation to take down my pharyngeal flap, then do the jaw surgery (along with an abbe flap to lengthen my upper lip), then
(if necessary), do a third operation to rebuild the pharyngeal flap.
That second opinion was looking like a very good idea. We headed to St. Louis to visit with the team there, and the information we were given sounded much better to me and my parents. This plastic surgeon said he would work with the ENT on the team, who thought he could intubate me fiberoptically. I had a nasendoscopy (my second that summer), and the ENT said it would be no problem to intubate that way. On top of that, the plastic surgeon told us that he very, very rarely wired patients jaws together anymore. If all went well, he would be able to hold my upper jaw
together with an internal metal plate, allowing my jaws to remain separate after surgery.
I started orthodontics right away, and a year later, I had jaw surgery about three weeks after my 18th birthday.
I came out of the procedure with two black eyes, a swollen face, and a sore hip (they'd redone the bone graft as well). By the time I started college six
weeks later, the swelling was mostly gone, but I wasn't yet used to my new face.
Since my jaw had been moved forward, the dynamics of my face had changed slightly. The biggest change was that my upper lip, which had always been a little short, was now very obviously too short. In early September, I drove myself to St. Louis for a checkup, and the doctor and I started talking about my having an abbe flap procedure done.
It was a crazy time in my life: I had just started college and was living in a dorm 30 minutes from my parents' home. I wasn't used to my new face, and it bothered me. I was trying to meet people, but things just felt weird. And back at home, my mom had just given birth to her seventh child, my little sister Jamie. Jamie was born September 10, 1997, with a bilateral cleft lip and cleft palate.
On December 18, 1997, the day after my last final of the semester, mom and I headed to St. Louis for my abbe flap procedure. In an abbe flap, the surgeon takes tissue from the skin between your lower lip and your chin, and transfers it to your upper lip, between your nose and
lip. The tissue remains connected to the donor site for several weeks so that the graft "takes" at the site where it has been placed. Essentially, my lips were "sewn together" for three weeks over Christmas and New Year's. In reality, my lips were connected in the middle by a narrow strip of
tissue. I quickly learned that some of the easiest things to eat were M & M's and pretzel sticks, both things that could easily fit through one of the sides of my mouth during that time!
When I returned to school in January, the one thing I had never, ever expected was the scar on my upper lip and lower lip. All the pictures I'd seen of abbe flap patients didn't show scars of any kind. I had a huge red "W"-shaped scar between my nose and upper lip, and a thin line perpendicular to my lower lip.
I was devestated. For the first time in my life, I began to have self esteem issues. That semester is still a whirlwind to me: I couldn't concentrate on my classes and didn't do well in school. I felt like everyone was staring at me as I walked to and from classes. I was an emotional wreck, for the first time in my life.
By the end of the school year, I had decided I wasn't ready to come back to school in the fall. I had no clue what I wanted to major in ro where I was going, and I just didn't feel like I could deal with it. I went home for the summer and worked and continued to heal, both physically and emotionally and mentally.
In October of that year, I flew to the east coast and began working as a nanny for a fantastic family near New York City. In all, I was there for 15 months, and I had the time of my life. I went to the city often--something I had always dreamed of doing. I was surrounded daily by four little kids who doted on me and didn't mind that I had scars on my face; they thought I was beautiful. I went to Scotland and France and drove around New England and enjoyed the time I had to be me.
I went to the east coast to do something I'd always had an interest in doing, but what I think I actually did was end up healing. By the end of 1999, I was ready. I had made peace with myself and come to love the "new me," scars and all. In the year 2000, I returned to Columbia to go back to the university where I'd spent my freshman year. I was stronger and more whole; more ME, and very happy to be me.
And then I met HIM. While visiting some friends in their dorm the first week of school, I was introduced to Nick, who I'd met in the elevator on my ride up to their floor. A month later, we started dating and we began to fall in love. I remember when I first began explaining my cleft to him. As we got more serious, I told him flat out that I may very well have children with clefts some day, and if that wasn't something he could deal with, I need to know sooner rather than later. He told me he could deal with it, and I knew then I had a keeper. On September 28, 2001, Nick
proposed and I accepted. We were married August 3, 2002. Our wedding day was truly what I had always dreamed of, and he is the man I always dreamed of finding!
The past few years of my life have been interesting, the further out I get from my last two operations. In the time since then, I've done a lot of thinking about physical looks and self esteem and clefts. For many years, I remember thinking that I was a little different, but the older I get, the less true I think that is.
I was shocked to learn that someone very close to me, who I have always thought to be a beautiful person (inside and out), has long had self esteem issues of their own. I think when it comes down to it, everyone has something that affects their self esteem; being born with a birth defect doesn't entitle you to a lifetime of self esteem issues or pity, because everyone around you has a problem with something about themselves. Having a birth defect doesn't mean you get to hold the monopoly on self esteem problems; if anything, I think my self esteem is better because of my cleft.
Nick and I aren't ready to have children yet; we want to wait a few more years before entering that phase of
our lives. Some days, the idea of having a child with a cleft scares me. I've seen the extremes, like with my brother Joey and my sister Jamie, and then there's
me and my dad--and I'd consider both him and I to be
"easy" cleft cases. In the end, though, I don't worry
about it, because I know that having a cleft really isn't
a big deal.
I'm now happily married to the man I always dreamed
about. I graduated from college with two bachelor's
degrees and with honors. Nick and I recently bought
our fist home, and we are happy to have jobs we love
and enjoying going to every day. I am an enthusiastic, happy, and strong individual--just the person my parents raised me to be! I know they're proud of me and the woman I've become.
Feature of the Month
Stories of Craniofacial Care and Inspiration
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This cleftAdvocate page was last updated March 25, 2014