Update!: My improved "Born to be Cleft" site can be seen at http://members.tripod.com/~Calvero/cleft ... This page here is the older edition and I'm keeping this page here because I'm not quite ready to remove it yet...
Born to be Cleft :)
Hi! And thanks for checking out my cleft page :). For those who haven't seen my homepage, I'm 25 years-old and I was born with a uni-lateral cleft lip and a bi-lateral cleft palate. And although I'm not very medically minded, here is my FAQ(Frequently Asked Questions) about being cleft:
What does "cleft" mean?
Cleft means split.
What is a cleft lip?
A cleft lip is when the top lip fails to be formed normally and leaves a open area from the bottom of the nose to the lip. There are two common types: unilateral (that's what I was born with) where there is only one side that has a hole under the nose, and bi-lateral where both areas under the notrils has a hole.
What is a cleft palate?
When the palate fails to form together, that's a cleft palate. There's two common types of this too, just like the cleft lip, uni-lateral and bi-lateral. Uni-lateral when one side of the palate is missing, and bi-lateral when both sides are missing. I was born with bi-lateral cleft palate.
What causes it?
No one knows for sure. One thing that is for certain is that it's passed down genetically. I've asked several members of my family if they knew if we had any relatives that were cleft. But what actually causes it is still unknown. There are a few theories, but nothing 100% sure.
Now that I asnwered the basics, I'll tell you what it's like...
My birth, and the problem of feeding me
Well, I was born it was the early 70s. I was my parents' second child, thier first one had died of a miscarraige. Not many in the medical world, or anyone else for that matter, knew much about cleft. I was born three weeks later than I was expected to arrive in the world, and boy what an entrance I made :). The nureses and doctors took one look at me and had absolutely no idea what to do with me. They took me away from my mom and tried to figure out how they were going to feed me. Since my top lip wasn't all there and I had no roof to my mouth, it was going to be a real challenge. Being breast fed was out of the question, so they went about trying different ways of holding me and getting food inside of me.
They returned me with my parents (I wasn't seperated very long) and the nurses worked with my mom on feeding me. I stayed in the hospital until they figured out how to feed me. And that was the
I was fed through a type of syringe. On one end of the syringe was a golden colored tube and a round red rubber hand pump (try to say that five times fast :) )at the other end. When it was time for me to eat, the red pump was removed and food was put in the syringe. The pump was replaced and the tube was put through the hole in my lip. Then mom would pump the food through the tube to my mouth. It was a little tricky not to get any food into the nasal area, since my mouth and nasal area was all one space.
My first operations
A friend of my granmother's knew of a plastic surgeon that was able to sew my lip and palate up. Only hard part was that the doctor was in Gainsville which was about two hours from where we lived. And so when I was only a few months old, I had both lip and palate sewn up. For the lip, it was simply sewing theends of the hold together. But for my palate, the doctor took skin from the inside of my cheecks and then sewed and stiched it to form a roof to my mouth. Later on in my life that would prevent my top jaw from growing out at the same rate of the rest of my head.
Life as a cleft toddler...
I don't remember anything when I was that little. All I know is the stories that mom, grandma, dad, and whoever was around then have told me. Mom kept a journal during that time, from when I was a few months old up to shortly after my sister was born (that was a year and a half after I was born) and that is helpful since that is. My family had no problem with me being born a little different than they expected. I think one reason was that my parents had lost their first child, and so they were able to appreciate me a little more since I did not have any life threatening conditions. I had all my limbs, my heart and lungs worked good, and other than being somewhat nearsighted and having a right lazy eye that doesn't allow me to see 3D, I was healthy and all that parents could hope for in a baby.
What? I'm retarded?!?
When I was old enough to walk around I went to the hospital and took psychological tests to see if I was born with any mental damage since there physical "damage". I don't remember any of these tests during this time, but mom told me that for one of them one of the researchers would give me a toy to play with. After a few minutes of playing with it the researcher took the toy away to see how I would react. Well, I didn't react to it. I didn't cry, or go chasing after the toy, or show any signs of being upset. To the doctors who were studying me this (and other conclusions from other tests) proved to them that there MUST be something wrong since I didn't fit the "norm" of other "normal" babies. The doctors met with my mom and me and they told her that I was too slow and classified me as mentally retarded, and that I would not do well if she put me in regular public school. Well, my mom got really mad about this. She told them that they didn't know me as well as they thought, and other than me looking different, I was normal. One of my earliest memories was sitting by mom at the end of a long table with the doctors sitting around talking to mom. Mom later told me that that was when they told her that I was retarded.
Going to school...
Ignoring what my doctors said, my mom enrolled me into a regular public preschool and later into a regular public school. I got along great with other kids and don't remember being made fun of during that time. Teachers thought I was great and a pleasure to teach. I played on the playground with the other kids without much of a problem.
When I was in first grade I took those academic tests that all the other kids that sees where I am in my math and reading skills. When the results came back it said that I had a above average reading level. So much for me being retarded :). My teacher and mom met several times, discussing what should be done about me. Should I stay in first grade, or could they risk me going right into second? Would I do well? After talking to the principal and teacher, they decided that I would skip first grade and started attending second grade. And so I did.
Second grade wasn't to bad, though my daily school schedule was different than other kids in either grade. I would drop my lunch box off at my first grade class, and then go to my second grade where I would stay until uit was time for my first grade class to go to lunch. I would then leave second grade, go with my first grade to lunch, and what happened later I don't really remember. I remember helping my first grade teacher teach math one time.
One of the classes I liked best was my speech class, because I was able to get out regular class :). It was one-on-one teaching where it would either be just me or only one or two other kids in the class. But it was rough. I had to pratice pronouncing sounds. One of my first speech teachers, maybe she was the first one I had, was Linda. We would practice sounds over and over again. The one I had most difficulty with was the "er" sound. I don't know how many times I had to go over that. Linda would show me where to put my toungue to pronounce certain sounds by using her hands, one hand representing the tongue and the other hand representing either the roof of my mouth or my teeth. Then I would try to copy what she was showing me. She would have me read from comic strips. One was designed for speech classes like mine. But I would also read from popular comics like Peanuts. That might be where I began to like the Peanuts comic strip.
Anyway I had about three (or was that four?) teachers that I went through. One year, I think it was third grade, my speech class ran on a point system. If we got so many assignments right, if we behaved, we received points for it. And at the end of the year I got two awards, one of them for getting the most points...okay so I'm bragging a little :).
Winning Disney's Dreamers and Doers Award
While I'm still bragging, I'll tell you about being awarded Disney's Dreamers and Doers award back in 1986. This is an award that the Disney people give to students who display the characteristics that Walt Disney himself admired most. There were four "C"s...courage, confidience....something like that. The year that I won was the first year that it went state wide. Students were picked from schools from around the state, and it was narrowed down to three finalists for each county, one from elementary school, one from junior high (that the level I was in), and another from high school. It was based on personal struggles that students had to go through and their ability to well academically. I was thrilled to be picked from my school but I wasn't expected to win. I was nominated by a couple teachers who I knew though who never taught me. They knew about my struggle with being cleft along with a couple other things that I went through. My school counseler said that if I was picked out of the county, I would be called back into her office in a few weeks. And a few weeks later I was. I was congratulated by everybody in the office area and by the principal. That was the only time that I ever went to the principal's office.
Anyway that was one of the biggest thrills of my life. I never won anything big before or since. I used to attend the end-of-the-schoolyear award assemblies and it seemed like everone one something but me. Winning the D&D was much better than winning any little school award :).
My advice to parents and other clefts...
I discovered that when I was in college and I told other students about being born cleft, they seemed to respect me more. I would hear some say that they had wondered what happened to my lip, but were afraid to ask. In a few classes when we would introduce ourselves, I mentioned about being cleft and explained what it was since I knew that there not every knows what it is.
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The last time I actually got around to updating this page was Monday, January 25, 1999.