One Of This Month's Featured Families!
Unilateral Cleft Lip and Palate
Just recently, I attempted to experiment with my new Kodak digital camera so that I could take an old photograph and "reproduce" it so to speak. This old picture has great sentimental value to me, but in its original form is becoming tattered and worn looking. My attempts with the local copier at the bookstore wasn't time consuming but did not yield favorable results and having a reprint made without the negative wouldn't be possible either. Why? This picture is the only one of me that was taken prior to any
surgery that was done. I am not "embarrassed" by or uncomfortable with this picture,
although it is infrequently shared with others.
While trying to combine the new technology of digital photography and computer imaging software, I had a chance to reflect on just what had happened during those
40 years. Just how exactly did that little girl of six weeks of age become this young adult woman? Seeing the "me" of 1962 certainly made me appreciate the "me" of 2002 and all the steps in between. That picture is symbolic to me in other ways as well. That infant in the picture was growing as a response to the love and sense of security that was offered at home. She was nothing but an ordinary little girl with a few medical concerns or obstacles that had to be dealt with.
I had my lip closed shortly after that unique picture was taken. Obviously, I don't recall those early events other than what has been shared with me by my parents. From what has been shared with me, I know that those experiences were not pleasant ones . For example, my crib was placed in the back of the nursery, presumably so as not to frighten the overjoyed visitors who came to visit the other newborns. At first the nurses didn't know how to feed me. When it came time for my first surgery, I can't imagine which was more frightening to my parents. Was it the surgery, or that they had to totally surrender me to the hospital staff for 10 days? Back then parents were not allowed to visit while their child was in the hospital.
My palate was closed at age two and a half, but I don't have any memories of that surgery. I had a hernia operation at age 5 and that is when I started having memories
of my hospital stays. Once I entered kindergarten, another whole "era" started. Attending school added a new dimension to my life as it meant venturing between the "haven" that was acceptance at home and finding my place among my peers. Elementary school gave me my first introduction to the fact that I was a bit different from the other children. And in middle school any difference - real or imagined were important to both myself and others. Having a nose that really was "flat" didn't help me blend in with crowd. It is hard to convince others that you are the same as they are, while you look different. At school I was "hose nose", while, in my house, I was just "me". Finding the middle ground was not an easy accomplishment.
Around the eighth grade, my life started to focus around having surgeries again. From then until the end of my senior year in high school, I had surgery at almost every vacation break. Some of these operations were not strictly related to my cleft lip and palate. Those that were included surgeries on my nose, tongue, a pharyngeal flap, and a lower jaw reduction. From early childhood until the end of high school there were years of speech therapy and braces. Of all these, experiences, I think that the most important one was the nose surgery, because that created the biggest change in my appearance. My least favorite one was the lower jaw reduction for several reasons. The night before the surgery was spent in the terminal cancer unit because that's where the "bed" was located. After this surgery, I was in the newborn/neonatal intensive care unit overnight where my nearest roommate was a three month old infant who was dying from cirrhosis of the liver. One of my funniest memory was from the same surgery - even though I was "supposed" to lose weight - I was actually the first person that my doctors can remember ever gaining 8 pounds with my mouth wired shut. Throughout the years, one of my most treasured friends was my orthodontist. Now he is a great personal friend and my "adopted" grandfather.
By the time I was 21, I felt that the biggest accomplishment of my life had been achieved. My face finally had the same "normal" appearance that others have had since the moment of birth. Underneath all these outward improvements in my appearance, there were other problems, as well. There had been other differences that I knew about but seldom shared with others. I saw each one of these "differences" as separate incidents of "bad luck". For example, I have normal pressure hydrocephalus (not requiring a shunt). I was a late walker as a child (age 3) and technically have residual cerebral palsy. Luckily those things didn't really show on the outside. With the help of a very good therapist, I began to realize that there are a number of "syndromes" that can feature either cleft lip and or palate as an outside manifestation. Twelve years ago I attended my first National Cleft Palate conference in St. Louis, and started the process of confirming that I did, in fact, have a syndrome. Simply put, my syndrome falls into the category of "midline deformity". Any part of the body that forms in two halves or that originates from the middle has a higher risk of not being properly formed or functioning. Actually this may sound strange, but I felt better knowing that my "differences" came as a "package deal" and not several strokes of misfortune befalling me.
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This cleftAdvocate page was last updated March 25, 2014