On Saturday, November 12, 1977, I met Dr. Paul Tessier, M.D., a plastic surgeon from France. Dr. Tessier pioneered many craniofacial techniques that laid the groundwork for the techniques of today. I had gotten my braces on my teeth earlier that fall. In August 1977, I had oral surgery to remove some teeth to make way for the braces. He only came to Kansas City for consultation purposes that year. Dr. McCoy wanted to wait to see the results of Dr. Tessier's techniques over a five-year period before he would allow any of his patients to go thru such major reconstructive surgery. He finally talked Dr. Tessier into coming to Kansas City in November 1977. I was one of a couple of people who had started their orthodontia in preparation for the surgery. I remember at the end of the consultation Dr. Tessier telling my parents and I that I would have surgery next year.
Right before Thanksgiving 1977, my mom gave my dad an ultimatum: Either quit drinking or move out. My dad gave up drinking. He has been sober for over 22 years as of this writing.
I knew what I was in for when surgery time rolled around in October 1978. I would literally cry myself to sleep some nights because I was scared of having my jaws wired. I would also lie in my bed at night and practice having my jaws shut together. This really scared me.
I need to back up here a bit... In sixth grade, I told my mom that I did not need the surgery. Originally my permanent nose was going to be built after the midface/jaw advancement was done. My plastic surgeon and my parents had me sit down and write out the questions that I had about my upcoming surgery. I created a list of questions and then met with my plastic surgeon to have them answered. My PS answered my questions as best as he could. He showed me two slides of a patient with an artificial nose that was attached to her glasses.
Before the end of September 1978, I knew that I was having surgery the following month. I can still remember the last full weekend at home. My maternal grandparents picked me up on Friday afternoon and took me to look at brand new houses that were on the 1978 Parade of Homes in 1978. I had (and still do) a fascination with houses. The next day, we had Thanksgiving dinner. Since my jaws would be wired, I wouldn't be able to have dinner with the rest of the family. On Sunday, my parents and I went to the hospital where I would be having my surgery for a small preop party. (You would think at 14 years of age and having had about eighteen surgeries behind me that I would need to attend a preop party. LOL) We got a tour of the hospital even though I had had ear tubes put in at this particular hospital a few years earlier. We visited all the areas in the hospital where we would be. During the get-together, the two other girls and I had to do what is called “play therapy.” We were shown a bear and the bear had a head bandage and tubes in it. Talk about being embarrassed.
Early Sun., Oct. 29, 1978, my parents and I drove to the children’s hospital. I was the first patient Dr. Tessier would see that day. After the consultation, I was admitted to a unit called Parent Care. My mom and I would stay in the unit for one night. The late morning and early afternoon was filled with tests and visits. I remember one of the doctors coming in and telling me that I would have a trach after surgery. No one had bothered to prepare me for that! During the afternoon, my parents and I went over to one of the local hotels and looked around and ate. We knew that it would be the last time I would be in public for a long time. I remember the day being warm for October. Late in the afternoon, we returned to the hospital. My mom and I had supper. After supper, I had to go to x-ray for a last-minute skull series.
I won’t forget that night before surgery. It was a night where I kept waking up to see if it was light out yet. I remember my dad getting to the hospital around 6 AM. I was taken to holding at 6:45 AM. Then finally taken to the OR at 7:05. I can still remember looking at the clock in the OR and the last thing I saw was the time on the clock: 7:10 AM. When I woke up, I was in ICU. I had just endured ten hours of surgery. I had a tracheotomy, an abbe flap, jaw advancement, and the first stage of nasal reconstruction. My parents told me much later that I looked like I a victim of war. They also said that they both nearly passed out when they first saw me after surgery.
I spent three days in ICU. I learned to communicate by pointing and writing notes. On Thurs., Nov. 2nd, I was transferred to a private room on the adolescent ward. I spent nearly three weeks in that room. I had another surgery to release the graft from nose and release my lips on Wed., Nov. 15th. I was weaned from the trach in a few days. It was taken out on Mon., Nov. 20th and I was released from the hospital the following day.
I would go on to have two minor procedures in Dec. 1978 and Jan. 1979. I had my arch bars removed on Dec. 15th and nasal stents put in on Jan. 25th.
I remained home from school for four-and-a-half months. I had a homebound teacher who came to my house two to three times a week to work with me on my school lessons.
By the time March 1979 rolled around, I was ready to go back to school. I think that Dr. McCoy and my parents thought that I would not return to school until after the second stage of my nasal reconstruction was completed. I surprised them all by saying that I wanted to go back to school. I returned to school on Mon., March 12th. I had the option of going for just half-days the first two weeks but I chose to go all day from the beginning.
I finished out my eighth grade year and people were glad to see me back after a long absence. The teachers and students were very supportive of me. Everyone had been periodically updated on my condition.
During the spring of 1979, my braces came off. And I got my first partial. My top front teeth never came in due to the cleft.
In August 1979, I began my ninth grade year. I had an algebra teacher who refused to make any accommodations for me in the classroom. I nearly failed his class the first quarter. My mom met with the teacher, my counselor, and the principal. During the meeting, the teacher said the wrong thing: He basically admitted that he didn’t want me in his class so he didn’t want to make the accommodations. The principal turned a bright shade of red and told my mom and counselor that he was pulling me out of the class the very next day. (The school district is very lucky we didn’t pursue legal action. We didn’t pursue it because the principal handled the situation very well.) I was moved into another math class, a pre-algebra one since there wasn’t another algebra class that hour. The teacher knew me because he had been my eighth grade math teacher.
During the final week of the third quarter of ninth grade, I had more surgery. This surgery involved taking bone from my left hip and putting it in my nose to form the nasal bridge. I also had genioplasty (chin reconstruction) and work done around my left orbit. After the surgery, the doctors thought that I had pneumonia because I wouldn’t cough. They did a blood gas (That was fun – NOT) and did a chest x-ray. I did not have pneumonia. When I got up for the first time out of bed after that surgery, I passed out in the hallway. My mom and the nurse came to my side very quickly. I think that I scared some people with that surgery. I spent a week in the hospital. I had more homebound teaching. I returned for the last week of school. I would be going to the senior high the next year.
During the summer of 1980, I decided that I wanted to do volunteer work at a hospital. My mom and I checked out one of the hospitals closer to home. I went in for an interview. She bought me the candy striper uniform and shoes. A couple of weeks later, I got a letter saying the volunteer positions had been filled. My mom spoke with my plastic surgeon. Not long after that, I got a call from the volunteer coordinator offering me a position. I told her that I didn’t want to volunteer where I was not wanted. I ended up getting a volunteer position at the local children’s hospital.
In late August 1980, I started my sophomore year in high school. The transition was not hard at all. I was going to school with most of the kids from my ninth grade class plus some new ones from the other junior high across town. There were never any problems. My teachers were supportive for the most part.
In early March 1981, I had my third Tessier surgery. During the surgery, Dr. Tessier took cartilage form my right ear and placed it in the tip of my nose as well as took bone from my hip and placed it in my nose. He also created a pharyngeal flap for me. That meant that less air would pass thru my nasal passage when I spoke. I had been going thru speech therapy for sometime. I came back to school in mid April.
I continued to volunteer at the hospital throughout my sophomore year in high school.
In August 1981, I began my junior year. The night before school started, my mom had to drive me down to the emergency room at the children’s hospital to have some blood work done. I should have done it on the first day of school but I didn’t want to miss any of the first day. So a compromise was made.. I had to come down to the emergency room and get my blood drawn. The blood was drawn so another chromosome count could be done. The count came out normal.
In late October 1981, I had yet another surgery. This surgery changed the way I viewed my future surgeries. The surgery was mainly revisions on my nose and upper lip. I came thru my surgery fine. I woke up in ICU. When my mom came into see me for the first time after surgery, I told her to get me out of there. I got transferred out of ICU that night. The following day one of my friends had her surgery. After her surgery, she was going to share the room with me. During the surgery, my friend received a blood transfusion. It was the wrong type. My friend nearly died from receiving the wrong type of blood. It took her a long time to recover from the ordeal. It is something that my parents and I can still recall today.
In early 1982, I was diagnosed with a medical problem called amenorrhea, which is the absence of the menses. I never started having periods on my own. The gynecologist that I went to never put me thru extensive testing because I was going thru a lot of reconstructive surgery at the time. It wasn’t until I started surfing the web and looking for information that I found out what I had and that it is caused by the pituitary gland’s inability to signal the ovaries to produce an egg. I started on hormone therapy at the age of seventeen. I never gave any thought to not having started my period until a friend had a hysterectomy to remove her ovaries at the age of fifteen. I am told that I could have children. All’s the doctor would do is change my hormone therapy.
In the summer of 1982, my family and I celebrated the fiftieth wedding anniversary of my maternal grandparents. The celebration was bittersweet as my grandfather’s health was failing. He had dementia.
In August 1982, I had my senior picture taken. I started my senior year in high school. That was going to be my year of not having any surgery. I was planning on attending the University of Kansas. I submitted my application to the University of Kansas in either late September or early October 1982.
In late October 1982, my parents and I went to conference to see Dr. Tessier. We told him that I wanted a surgery-free year. At the end of our meeting, he told us that he would see us next year. My parents and I had a discussion on the way home… Needless to say, I ended up changing my mind. I did not want to sacrifice my first year of college. When we got home, my mom made a call to my plastic surgeon’s nurse who was still in conference at the hospital. I did get squeezed into the surgery schedule. My surgery was on Friday, October 29, 1982. During the surgery, Dr. Tessier built the space in front of the area that would allow my partial to be more stable. He also did revisions to left orbit and nose. This is the surgery that I refused to go to ICU afterwards. The surgery was four hours long.
Thurs., Nov. 4, 1982. It was one of the proudest moments of my life so far. I was still in the hospital. My youngest brother called my mom and I. He spoke with me. He said that a letter had arrived from the University of Kansas. I told him to open it. It was my acceptance letter. KU was the only college I had applied for admission. I had a dream of going to KU. I told my brother to send that letter with my dad who would be coming up to visit that evening. My dad brought the letter up and I showed it to everyone. I still have the letter.
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