You'll find hundreds of files on cleft lip, cleft palate here on widesmiles.org.
This one is about: Kristi's Story
(c) 1997 Wide Smiles
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My Story - by KristiI was born on June 15, 1964 at 1:50 p.m. at a hospital in Kansas City MO. I was born three weeks early.
I was born in the days when moms were anesthetized for delivery. When my mom woke up in recovery, her father and my dad went into see her along with the doctor. They told her that there was a problem with the baby. My mom thought that I was dead.
I had been born with a midline cleft (involved both lip and palate) and other craniofacial anomalies (including being born without a nose). A plastic surgeon (who would be my plastic surgeon for 29 years) was called in the day after I was born. He told my parents that my face could be reconstructed. He knew that techniques were being developed in the area of craniofacial reconstructive techniques.
I had my first surgery, lip closure, at the age of nine days. It would be the first of thirty-three surgeries.
After three weeks, I went home and joined my parents and my two older brothers. My oldest brother, David, was born in Oct. 1960, and my other brother, Scott, was born in Dec. 1961. My mom gave birth to another son, Mark, in June 1965.
The doctors did not know what to expect with me. My parents' only support system were my plastic surgeon, family, and friends. There was not a support group for parents of children with cleft palate and/or lip and/or other craniofacial anomalies.
I was never fed with a bottle. Instead, my mom used whiskey glasses to feed me. She could only buy the glasses at a liquor store.
My plastic surgeon repaired my palate when I was 21 months.
Not only was I born with craniofacial anomalies, I was born with low vision. My problems with low vision was misdiagnosed as mental retardation. I was tested at 2 1/2 by a psychologist who told my mom that I had mental retardation. My mom was referred to a preschool that was for children with low vision or blindness. The director of the pre-school noticed that I did not have the social skills of a child with mental retardation. My problem - the area of the brain that tells the eyes was to see was underdeveloped. In three months, I could see the house across the street from ours. At age four, I was re-tested and found to have normal intelligence.
I attended the pre-school for three years. It helped me be prepared to start public school. When I was four years old, a special education evaluator came to the pre-school came to the school and evaluated my skills. He told my mom and the director of the pre-school that my nose should be constructed before I started kindergarten.
My plastic surgeon built my nasal passage when I was four years old.
When I was five years old, he built my first nose. It was a small one since he knew that it would not grow with the rest of my face. It would be rebuilt when I stopped growing. My first nose was built with skin from my inner left arm. To build it, my plastic surgeon built a flap from my arm to my nose. The flap was in place for two weeks and I was in a head-to-waist cast for the whole two weeks. My parents almost lost me while I was in the cast. My mom was reading to me when she notice that I wasn't breathing. She ran to get help and everyone started running to my room. I had surgery to release the flap. My columella pulled away but the plastic surgeon did not rebuild it because I would outgrow the nose in a few years.
I started kindergarten at a public school when I was six years old. My youngest brother and I were in the same grade. We didn't have the same teachers from kindergarten thru third grades. But from fourth to sixth grade, we did because mom felt that we could support one another. I didn't have much trouble with teasing. If someone did tease me, it was taken care of very quickly. Or if anyone did tease me, they didn't do in front of me. I found most kids to be supportive.
I always did well in school. My grades were above average.
I went everywhere in public with my family. People stared but I can't remember anyone being rude to my family or I. People asked questions about my appearance and I would answer in one of three ways: I was born without a nose; It's none of their business; or I didn't want to talk about it. It really depended on the mood I was in.
I went on to junior high school. I was accepted by many of my peers. I can only recall two incidents of being teased and that was all.
When I was in seventh grade an article was written about me by a free-lance writer. I even had students write to me from other schools. The article was done in conjunction with the local United Way campaign that year.
I first met Dr. Paul Tessier on Sat., Nov. 12, 1977. My plastic surgeon had persuaded him to come to Kansas City. He had not come to Kansas City to do surgery that year because no one was ready for surgery. He came for consultations.
In eighth grade, my major craniofacial reconstruction started. I had four surgeries that year. All within a three-month period. The first one was on Mon., Oct. 30, 1978. During that surgery, Dr. Tessier did my jaw/midface advancement using bone from my right hip and shin (both were moved 3/4 of an inch forward), did an Abbe flap, used the skin from my other nose to build a bigger nasal passage, began building my permanent nose (used skin from my forehead to build it), and a tracheostomy (had it for three weeks). The second surgery on Wed., Nov. 15, 1978, was to release the forehead and abbe flaps. I spent three weeks and two days in the hospital. The third surgery was on Fri., Dec. 15, 1978, to remove my arch bars (my jaws had been wired for six weeks and four days) and to have my last set of ear tubes put in. In late January 1979, I had to go to the operating room to have nasal tubes put in because my nostrils has started closing up. I missed 4 1/2 months of school but was able to keep up with homebound teaching. I had a lot of support from family, friends, and peers during that time. It was during this time that my next-to-the-
oldest brother nicknamed me "Larry Csonka" because my nose was huge.In ninth grade, I had my first experience of discrimination. I had an algebra teacher who refused to teach me. He would not provide me any accommodations in the classroom. After the first quarter, my mom decided to have a meeting with my teacher, counselor, and principal because she wanted to know why I was doing poorly in the class and knew that I was capable of doing the work. In front of three people, the teacher admitted that he didn't want to teach me. Turning a bright shade of red, the principal told the other two that they were pulling me out of the class right then and there. They had to put me in a pre-algebra class because there wasn't another algebra class that hour. The grade showed up on my transcript but was never counted.
In the spring of 1979, I started wearing a partial. My front top teeth never came in.
I had more reconstructive surgery on Feb. 28, 1980. This time Dr. Tessier put the bone (from my right hip) in my nose and shaped it up some, did some work on my chin, did a lip revision (the right side of my lip had pulled up after the abbe flap), worked around my left eye. I was in the hospital for a week and off school for three months. I had more homebound teaching by the same teacher who had taught me the year before. I went back to school in time for my last week of junior high.
While I was recovering from this surgery, I began wearing glasses full-time. I had gotten my first pair when I was in first grade. Up until eighth grade, I only wore them for reading the blackboards at school. I had to go eighteen months without glasses because my newly-built nose was so big.
Right before high school, I applied for a volunteer position at a local hospital. I didn't get one because the director of volunteers said that they had enough candy stripers. My plastic surgeon here in Kansas City made a call to that woman and she called me. My words to her were: "I don't go where I am not wanted."
I ended up getting a volunteer position at the hospital where I underwent all my major reconstruction surgery. My friend and I were the only candy stripers they had during the school year at that time. I volunteered there for two years.
This really helped the nursing staff to get to know me as a person rather than just a patient.
I started senior high school in August 1980. I never had one problem in high school. Again I was accepted by my peers. I wasn't part of the "in" crowd. For one thing, that wasn't my style. More importantly, I didn't want to be. I was my own person.
I had more reconstructive surgery on March 6, 1981. During this surgery, Dr. Tessier worked around my left eye by using bone from my left hip, shaped my nose by using cartilage from my right ear, and built my pharyngeal flap. I spent six days in the hospital. I missed six weeks of school and had homebound teaching. My Latin teacher did my homebound teaching.
On Thurs., Oct. 29, 1981, I underwent my fourth Tessier surgery. This time he just worked on shaping up my nose more and some other odds and ends. I was in the hospital four days. It was during this hospitalization that my views on my surgeries changed. I had a friend who was given the wrong blood during her surgery and she nearly died from it.
In August 1982, I started one of the best years of my life. It was my senior year in high school. I had a lot of great things happen to me that year.
For one thing I had decided that I was going to be surgery-free that year. My parents and I had talked about it. But, due to circumstances I had to talk my way into the schedule that year. I was not going to give up my freshman year in college the following year. Plus if I went ahead with the surgery, my parents and I thought that Dr. Tessier would finish my reconstruction that fall.
I had more surgery on Fri., Oct. 29, 1982. This time Dr. Tessier did extensive work around my left eye (used bone from my right hip), built an area in the roof of mouth (using skin from my right hip) so my partial would stay more secure, and shaped up my nose more. I spent eight days in the hospital and six weeks recovering at home. I had more homebound teaching with my Latin teacher.
The day before I was released from the hospital I received my acceptance letter from the Univ. of Kansas. I can remember talking to my youngest brother on the phone to open the envelope. My dad brought the letter up to me that evening when he came to visit. KU was the only school I applied to. It was the only school I wanted to go to.
I could have graduated in January 1983 because I had enough credits to graduate. But I decided to stay in school. In February 1983 I received an invitation to apply for the National Honor Society. I did apply. In March 1983 I received a letter that I would be inducted. I'll never forget the morning that letter was delivered. I was in my first-hour class (actually I was a student assistant for my Latin teacher). It was toward the end of the hour. Someone in the class had gotten a letter too. I said that I had gotten a letter and opened it up. I was in shock, I think.
On Tuesday, May 24, 1983, I graduated from high school. I graduated in the top thirty percent of my class.
In August 1983, I enrolled at the University of Kansas in Lawrence. I lived on campus in a co-ed dorm. I made some new friends and had a great freshman year. Again, I didn't want to be part of the "in" crowd. I didn't want to be in a sorority. That was not for me.
My parents and I were hoping that Dr. Tessier would release me. But he didn't.
In the summer of 1984, I received some news from my plastic surgeon here in Kansas City. Dr. Tessier wanted to re-do my midface/jaw advancement. After some discussion, my parents and I decided against the second advancement. For one thing, I didn't want to go thru it again. My parents didn't want to see me go thru it again. I was moving ahead in my life. I was going to college and enjoying surgery-free years. But I knew after I was done with college, I knew that I was going to have more surgery. To this day I don't regret going thru the second advancement.
The rest of my college years went by uneventful. I applied for admission to KU School of Social Welfare. I was accepted. My family saw the birth of my first niece, Ashley, in May 1986. She was born healthy. (My oldest brother was married four days after I graduated from high school).
In the summer of 1987, I had the worst experience of my life. I was doing a field practicum at a non-profit organization here in Kansas City for my undergraduate degree in social work. I had to work under the supervision of two women. One of the women (my field supervisor) verbally abused me. She didn't like anything about me and criticized me. The other woman (my field instructor) never could look directly at me. One day I asked her why she never looked at me. She said that my face looked terrible. The only time that woman looked me in the face was the day she told me that I was going to fail my practicum. The School of Social Welfare did not believe me until an advocate was brought in by my self. In the end, I got to re-do my practicum. Some people had suggested that I have the grade changed. I had to prove to myself that I could do it. The events of the summer of 1987 had damaged my self-esteem, self-confidence, and self-worth. Eventually they were re-built with no professional intervention. I had to work thru the issues myself.
I underwent three more surgeries in the falls of 1987, 1988, and 1989, by Dr. Tessier. During the surgery of 1987, the plastic surgeons rebuilt my left eye orbit by using bone from my skull and raised the tip of my nose. (After that surgery my columella pulled away). In the fall of 1988, the plastic surgeons widened the opening for my nostrils by using skin from behind by right ear. I used an unusual nasal splint to keep the opening opened for months afterwards. In the fall of 1989, the plastic surgeons tried to re-built my columella by using skin flaps from the end of my nose. The columella failed.
In August 1989, I had started volunteering at the non-profit organization where I eventually re-did my social work practicum. I did the practicum in the winter and spring of 1990. I stayed on as a volunteer. Then I was nominated and subsequently elected to its board of directors in the fall of 1990. I served on the board until I was hired as a full-time staff member in June 1991. The day I was offered the job, I told my boss that it was the best damn birthday gift I ever got. LOL
I didn't have anymore surgery until Jan. 1992. During that surgery, my plastic surgeon tunneled a flap of skin from my right cheek to my nose. Three weeks later, the flap was released with another surgery. This would be my last surgery until May 1996.
I moved into my first apartment later that spring. Then I moved back home in August of 1993. I decided that I wanted money to spend not to pump into rent and utilities.
My longtime plastic surgeon, whom I had since I was one day old, retired. Dr. Tessier retired too and I saw him for the last time in April 1993. I was without a plastic surgeon for over two years. The plastic surgeon I was referred to went to Paris, France to train at Dr. Tessier's clinic.
My second niece, Ally, was born in Nov. 1994. I was one of the first people to hold her. I even held her before my mom did.
I began seeing my present plastic surgeon in Oct. 1995. I have watched his practice grow. I really like my current plastic surgeon because he will sit down and give me the options.
In March 1996, I witnessed the birth of my third niece. When my brother and sister-in-law told me that they were going to have a baby, they asked me to be in the birthing room with them. They wanted me to videotape it. I had planned for that day for so long. It finally came on March 7th. I can remember getting a call at work from my mom telling me that my sister-in-law was in labor and at the hospital. I left work early. We got to the hospital around 6:30 p.m. or so. We visited a for a bit with my brother and sister-in-law for a little bit and then we went out into the waiting room. About 8:00 pm or so, my brother comes back and gets me. I was kind of nervous standing there because anything could go wrong. Finally the baby was born. Her name is Kayla. Watching a baby being born is one of the highlights of my life.
In May 1996, I had my thirty-third surgery. During the surgery, my plastic surgeon made my nostrils bigger. The surgery was suppose to be outpatient but I ended up having to spend the night for observation due to complications.
In the fall of 1996, things started falling apart with my job. I was given a new position in August 1996. I made a lateral move from being an Independent Living Specialist to Information and Referral Specialist. I went on vacation in November and returned to find that I was an Independent Living Specialist again because the organization wanted to bring up the numbers in its direct services. I was not pleased but I accepted it nonetheless. In December while home on vacation, I received a letter by courier service telling me I had been laid off due to major problems within the direct services. I was told that I was welcome to re-apply but I chose not to. It was time to move on.
Currently I am unemployed. But my future plans include writing a book about my life and going to school to learn to become a computer tech. I have more surgery planned for sometime this year. This surgery will involve work on my nose and possibly on my palate.
Written February 1997