My Story - Part One

My story begins in late 1963. It began some months before I was born. Early in her pregnancy, my mom became violently ill one evening. My mom believes that her quick and violent illness caused my condition.

I was born on Monday, June 15, 1964, at St. Luke’s Hospital in Kansas City MO.

My mom went into labor with me that morning. Before heading to the hospital, she had to run to a local department store to pick up some nightclothes for the hospital. Within a couple of hours of arriving at the hospital, my mom gave birth to me. I was born at 1:50 PM. My mom had been put under general anesthesia during my delivery. When she woke up in the recovery room, my paternal grandfather and my dad were talking to the obstetrician right outside the door. The first thing that came into my mom's mind was that I was dead. The three men approached her bedside. The obstetrician told my mom that I had been born without a nose. I had been born with a rare craniofacial condition called arhinia. Due to arhinia, I had been born with various anomalies, including a midline cleft lip and palate.

The following day, Dr. Frederick J. McCoy, M.D., the plastic surgeon saw me for the first time. He would be my plastic surgeon for the next twenty-nine years. Dr. McCoy had never seen a case like mine. When my mom was released from the hospital, she did some research on Dr. McCoy. She contacted the American Medical Association and was told that he was one of the best plastic surgeons in the area.

Dr. McCoy told my parents that my nose could be reconstructed. At the time, techniques were being developed.

I spent the first three weeks of my life in the hospital. At the age of nine days, Dr. McCoy did my lip repair. My mom was taught how to feed me with a shot glass. (She would have to go to a bar to get them.) When I was released from the hospital, the pediatrician told my mom to call anytime. The doctors were not sure if I would survive.

After overcoming the shock of giving birth to a child with extensive craniofacial anomalies, my mom decided that I needed help since there were concerns about my vision and intelligence. I had my first cleft palate conference at the age of eighteen months. Because of my vision, I did not walk until I was eighteen months of age. I could only see a couple of feet in front of me.

At the age of twenty-one months, Dr. McCoy repaired my cleft palate. Mom said that I had to use arm restraints for at least six weeks. She said that I did not mind them.

When I was two-and-a-half years old, the psychologists decided to test my intelligence. According to the test results, I was mentally retarded. Because I had limited vision, my mom was given a referral for a preschool for children with blindness. I started preschool in 1967. At the time, I was not potty-trained because I ate basically liquids and baby food at the age of three. My mom could not get me potty-trained because of the diet I was on. The director of the preschool told my mom not to worry. Within a week or two, the director had me potty trained and eating hard food.

The director of the preschool noticed that I did not have the social skills of a child with mental retardation. I had an eye-mind coordination problem, as a result of that part of the brain that tells the eyes what to see was underdeveloped. By the time I was three-and-a-half years old, I had gone from seeing just a few feet in front of me to being able to see the house across the street. (The Christmases prior to my third birthday, my parents would drive around the city to look at Christmas lights and there would be no reaction from me because I could not see them.)

When I was four years old, a man from the special education department came to evaluate me for kindergarten. He told the director of the preschool that I needed to have my nose reconstructed before I began public school.

When I was four years old, Dr. McCoy created my first nasal passage. The day after the surgery, I had to go back to the operating room because the packing had come undone and started to come out thru the back of my throat. Mom said it was a long day because I had to wait all day for the surgery.

At four-and-a-half years of age, the psychologists retested me. This time the results showed that I had normal intelligence. (One of the many times I have defied medical personnel. )

The fall after my fifth birthday, I had my first major reconstructive surgery. I had three surgeries within four weeks. The first surgery was to prep the inner portion of my upper left arm to be grafted to my face. A week later, Dr. McCoy took a flap of skin from my upper inner left arm and attached it to my face to form my nose. This nose would be "temporary" because it would not grow with the rest of my face. After the surgery, I was in a head-to-wait body cast. My head was turned to the left since my left arm was attached to it. I remained in this position for two weeks. I couldn't even get out of bed. The only way I could get out of bed if someone lifted me and placed me on a gurney. I remember being in the hospital and the bed turned so I could watch television and look outside. I was in a four-bed room with older girls. Because of my young age, Dr. McCoy did not want to put me in the intensive care unit because he thought being in there would frighten me. One night I stopped breathing. My mom, who was reading to me at the time, just happened to look up and noticed that I was not breathing. She ran as fast as she could to the nurses' station. The nurses came running. Dr. McCoy came to my bedside. I had stopped breathing because I had been heavily sedated. Dr. McCoy decided to put me on oxygen even though it was risky due to the graft. After two weeks or so, Dr. McCoy took me back to surgery to release the graft. When I woke up in recovery, I told the nurses that I had a nose so I could go to school now. I wanted to go to school so bad with my older brothers.

The surgery was partially successful. The graft took for the most part but the columella did not. For nine years, I had a nose with a single nostril.

Over the next two years, I had many surgeries involving my tearducts. I was born without tearducts so Dr. McCoy had to create some for me.

In August 1970, I began kindergarten at the grade school near my home. The teachers and staff accepted me. I had no specialized education once I entered grade school. I did have speech therapy for the first couple of years. I did well in school. I made friends.

Once I got past the surgeries involving my tearducts in 1970 and 1971, I had a hiatus from reconstructive surgeries. The procedures I had from 1972 to 1977 were "minor:" ear tube insertion, an eye surgery (tighten the muscle in my left eye), and oral surgery.

In the fall of 1977, I began seventh grade at the public junior high school near my home. At the end of the first quarter, I made the honor roll. The teachers and kids were supportive for the most part. Just like in elementary school, I always felt accepted for the most part. Very few kids bothered me. If any kids did bother me, I would go to the teacher of that class or my counselor. I think that I was personally responsible for the release of two of the teachers from the junior high. One was an art teacher who did not return the year following my seventh grade year. The other was a math teacher who was reassigned to the high school.