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Bilateral Cleft Lip and Palate
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A cleft, or opening, occurs in the lip and/or palate during the 4th to 8th week of pregnancy. It is the 4th most common birth defect, and the most common facial defect. Many times, a cleft occurs even before the mother knows she is pregnant. A cleft can be either unilateral or bilateral, affecting either one or both sides of the lip. It can be complete or incomplete, meaning it does or does not go completely through the structure. The alveolar ridge, or gum line, can also be affected. The cause of clefting is basically unknown, but it can be linked to both genetic and environmental factors. The Native American, Hispanic, and Asian populations have the highest incidence of a cleft occurring (1:500), least affected are those of African ethnicity (1:1,000). People born of a European descent have a 1 in 700 chance of a cleft occurring.
I was one of those children born in 1979. I was born with a bilateral cleft lip and palate. In my case, my birth defect was hereditary. My mom's lip was split on one side, and my mother's grandfather had a unilateral cleft lip.
I have had a total of 17 surgeries, mostly related to the cleft lip and palate. I had most of my surgeries before I was 7 years old, most of which took place in Charleston, SC. I had my first cleft lip repair at 11 and 12 months old, which was late compared to even 1979 standards.
I did not have my lip repaired any earlier due to a heart murmur. At 5 months old, I was not gaining much weight, and it was determined that a heart valve that is supposed to close up with the first breath after birth did not. I had heart surgery at 6 months to close the valve. Five years later in 1984, my brother's valve did not close and it was closed with three injections. He was born two months early, which was scary for my family, but he had no other major problems.
Around the time I was 5 years old, my parents decided to take me to doctors in Atlanta, where I had 2 surgeries that I really do not remember. The surgeries I remember occurred ten years later, at the age of 17.
Two years after the first bone graft, after my freshman year at Winthrop, I had another surgery called a maxillary advancement. My upper jaw was moved up 4mm, and my chin was adjusted to fit the new placement of the upper arch. Bone was taken out of my chin and put into my upper jaw. My jaw was totally rubber banded shut with the help of my braces for 2 weeks, then the restriction was lifted and I could take them off to eat very soft food. Three months after this surgery, a cyst came up on my left cheek. It was removed, but came back almost a week later. The hardware (screws and plates) had become infected with pseudomonas and staph aureus. After this infection happened, my upper jaw was never stable.
The summer before my senior year of high school in 1996, I had a bone graft to connect my upper arch, which was in three pieces until this point. Before this surgery, I wore an over denture to cover up the three-piece arch. Bone was taken from my right hip and placed in my jaw to make a complete arch. The back two pieces of my jaw were moved down and up, while my pre-maxilla, or front section of the upper dental arch, was moved up and back. I wore braces for two years to realign my teeth.
I had to have surgery a week before Thanksgiving my sophomore year of undergraduate school to remove the hardware on the left side of my face. I went back to school to finish exams with a PICC line, which is an IV that enters around the elbow and goes up the arm into the aorta.
Over the next two years at college, I would have two flare ups of my sinuses with staph aureus causing me to have another PICC line for 6 weeks and oral antibiotics for a year and a half.
As I entered Western Carolina last fall for graduate school, the sinuses on the right side of my face swelled up two weeks after school started, and then again two months later. A year ago in December 2001, my craniofacial surgeon took all of the hardware out of my jaw. When he went in, he found a "soft spot" around the spot where my cheek had been swelling over the past two years. He was able to take bone from my left hip and place it in this soft spot, and stabilize my jaw with bone and dissolvable hardware. The dissolvable hardware was not available for use during the previous two bone grafts of 1996 and 1998. The surgery went well, and except for the sore hip and swollen jaw, I was in church six days later on Christmas Eve. Three weeks later, I started my second semester of grad school.
I am now a over year away from when I had surgery last December and 9 months since taking oral antibiotics, and knock on wood have not had any flare-ups. I have started some dental work that I have been waiting four years to begin, which will be finished sometime in the summer of 2003.
I have been very blessed to have a wonderful family, both biological and not. My family has been there for every doctor's appointment and surgery. As I entered Winthrop in 1997, I found a wonderful group of friends who have been such a great support and constant in my life over the past 6 years.
Since I was away from home at times when things would happen, whether it was a problem with braces or my face swelling or living with me when I had a PICC line, my family of Winthrop friends helped me through these times, and helped keep my spirits up. Upon coming to Western, I entered my class with three other Winthrop alumni, which was very comforting, especially when I got sick two weeks into the semester. Over the past year and a half, I have come to know my classmates, and I now have another support system along with three close friends where I live.
I cannot remember a time that I considered myself really different from others, at least physically. I never known anything but to accept my birth defect and deal with whatever I have been given, no matter how hard it has been at times. Everyone has been asked the question, "If you could change one thing about yourself, what would it be?" Being born with a cleft is something I would not change, but I think I would want to be a little taller. I know that if I had not been born with a cleft, I would be a totally different person, because as it did not make me who I am, it helped me become who I am. I think accepting what you are given to handle, and using that to get through whatever you have to deal with is a
key factor in being successful with it. Throughout my life, my faith has been a major factor in my healing process before and after surgeries. God has so graciously granted me with good health, numerous family members and friends, great doctors, and a sense of humor. I also think about the fact that there are so many worse things to deal with, such as life threatening illnesses to poverty, that make things I deal with feel small in comparison.
I am currently in my second year of grad school to get a Master's in Speech-Language Pathology. I received speech therapy for 9 years, from age 2 to 11, for articulation, and this is part of the reason I want to be a speech-language pathologist, along with being able to help others. As I graduate in 4 months, I hope to one day be able to let someone else know
Conclusion - Written December 17, 2002 in Atlanta
Today after 23 years, I felt a sense of completion. I don't think I have ever dreamed of a doctor one day saying - you're finished. The finality of that statement still shocks me 10 hours later. To have surgery and doctors visits as a part of my life since before I can remember and then have my trusted surgeon - the director of craniofacial surgery of Scottish Rite in Atlanta - look into my eyes and say, "she doesn't need anything else unless she wants it - you're finished." Wow. I never thought I would walk out of that office with a "come see me when your prosthodontics are finished" statement.
Even though I will be doing dental work until summer 2003, I feel great. Part of me is ecstatic; the other part of me feels like I am going into a world of unknown. My life, at least the past 6 years, has been waiting for something to happen, for something to go wrong. Now that I have been given the official "finished" label, I feel like there is a completion to a stage of my life that has helped me become who I am, and in a sense what I want my career to be. But for me, my struggle has been extinguished and the light at the end of the tunnel has never been so bright. The light is as bright as a day without a cloud in the sky, where the mountains are so shockingly solid against the otherwise never ending blue.
My mom is laying on the other bed reading as I write on mine. I finished the book I started earlier today, and as I read the last sentence I knew I had to write my thoughts. I have so many at this moment, but can't exactly verbalize themit is the end. I am so lucky.
they are not alone, that someone has gone through something similar. Maybe my having been there will help someone have more confidence, and will help them see that there is indeed a light at the end of the tunnel.
My parents and grandparents have been every step with me over the past almost 24 years. My brother has endured me getting all of the attention for weeks after surgeries, but doesn't seem to hold it against me too much. All of them had to love me and be there because they are my family. I know I am blessed to have them, because I have met others that aren't so lucky - whether affected by a cleft or not. They are the unsung heroes because they brought me up to be the positive person that I am. I don't thank them enough.
Another group of unsung heroes in my life are my friends - my wonderful friends. They, unlike my family, could have easily abandoned me and left me to deal with PICC lines, swollen cheeks, and "gimpy" hips, but they didn't and I am forever grateful. They wrapped my IV in saran wrap before I took a shower so it wouldn't get wet when they had been up all night with the student newspaper and could have been getting in bed, they sat in the office while the second PICC line was put in my arm, they took me home when my face swelled, they held me as I cried. Even my newer friends, that I now feel like I have known all of my life but only entered a year and a half ago, have been there in countless ways of morale support for which I can never thank them enough; except to be there unconditionally for them as I feel they have for me. They may not have known me through the roughest parts of the past 6 years, but they were guardian angels waiting to meet me as I entered grad school. All of my friends - the closest and dearest ones (and I hope they know who they are) - are a heaven sent gift that God so graciously has blessed me.
From my parental family to my church family, to my Winthrop and Western family - I don't know if I can ever thank you or acknowledge your presence and significance in my life enough to show how much each of you mean to me.
This page is dedicated to my family, and to the ones that
"I hope they know who they are":
~The Winthrop Gang: Amy, Julie, Jonathan,
Katie, Susannah, Cheryl, Greta, Donna, and Sharon~
~Rachel, Robin, and Stephanie~
~Mitch, Michelle, and 'Owee'~
~James and Jennifer~
~My CD 2003 classmates~
Feature of the Month
Stories of Craniofacial Care and Inspiration
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This cleftAdvocate page was last updated March 25, 2014