copyright © 2001 Wide Smiles, Inc. This Document is from WideSmiles Website - http://www.widesmiles.org/ Reprint in whole or in part, without written permission from Wide Smiles, is prohibited. Email: WideSmiles@aol.com
Amber's Story
After visiting the Wide Smiles site several times, I have come to read many of the stories from other people like me. Many of the stories are very similar to mine and they have given me strength in dealing with my past and confidence in what I am about to face. I would like to share some of my experiences with you.
I was born on November 21, 1973 with a complete bilateral cleft lip and palate. Despite the reaction of the doctor and nurses at my birth, my parents were not particularly surprised by my birth defect. My mother's mother and father, her sister, two brothers, and three half brothers were also born with similar defects ranging from a tiny "harelip" to complete unilateral cleft lip and palate. I was her fifth child but the first to be born this way and the first in the whole family to have a complete bilateral cleft. The most worrisome time for my mother was when they told her there was something wrong with my heart after they delayed returning me to her after my birth. (She thinks that they were just afraid of her reaction - but what kind of stall technique is that?) To date I have no heart problems, although my oldest half-brother died of a congenital heart defect at age 13.
By now you're probably thinking what a messed up gene pool my family has. Sometimes I joke with my mom about her questionable "hillbilly" family tree (yes, as a matter of fact they came from the back hills of the Adirondack Mountains in New York). As it turns out, I only very recently learned of my diagnosis as being Van Der Woude Syndrome, which is an autosomal dominant genetic disorder. This means that every child born in my mother's family has a 50/50 chance of being affected. In addition to the frequency of clefts in my family, at least every other person had lip pits or mucous pits which are the "signature" of the syndrome. (Lip pits being snakebite like pits in the bottom lip that are technically mutated mucous glands, as I understand it). My mom and both of my half-brothers had lip pits, and I had it all.
I grew up in a military family; my dad was a career Air Force enlisted member. Despite the typical military lifestyle of moving around, we managed to stay at the Air Force base in the town of my birth until I was twelve. I had surgery to repair my upper lip at eight weeks, and to repair my soft palate at nine months. I had more lip revisions at around 18 months. Around two years old I had surgery to remove the mucous pits in my lower lip, and again at age four because one was not completely removed. I had the same plastic surgeon for all of this since birth. At age six, I was sent to a Children's Hospital in Canada to have more upper lip revision.
My hard palate was never closed during this time frame, much to my mother's and my speech therapist's dismay. Instead, I had orthodontic appliances (retainers) to widen and then maintain my upper jaw. My dad paid for the orthodontics out of pocket for nearly six years. By the time I was twelve, no work had been done to repair my hard palate or the clefts in my upper jaw. Supposedly, it was to be done when I was fifteen years old. I was also supposed to receive braces.
When I was twelve, my dad could no longer hold off the Air Force, he was required to do an overseas tour. They gave him a choice - three years overseas with family, or two years unaccompanied. My parents chose not to break up the family for that long, so we moved to England for three years. I suppose my parents assumed there were no orthodontists available overseas, so the treatment I was having went by the wayside. The bands for my retainer came loose and eventually fell out.
Like most cleft affected children, I can remember being the object of ridicule and picked on for the way I looked and the way I talked. When I started school in England, I was a loner. I had a history of trouble making and keeping friends (military lifestyle didn't help in the "keeping" part either). I was also a tomboy, convinced that my ugly face kept me separate from my other female peers anyway; I dressed and acted how I wanted. Moving to England brought about a change. For once, no one made fun of me. I don't remember a single comment from any of my schoolmates. Perhaps being a much smaller school brought closeness among the students that I hadn't experienced before. On the other hand, maybe it was the similar family lifestyles of moving from place to place that lead to more tolerance of others. I started making friends and the ugly face I saw in the mirror began to disappear. I started sitting in the front of the class, took an interest in sports, and I got heavily involved with the school drama program.
There was only one person at my new school who consistently brought my birth defect back to my attention - my drama teacher. She refused to cast me in anything more than one-liner parts in any of the school productions. She couldn't get over my speech problem. I guess to make up for it, she cast me in the role of the deaf woman in a duet of Children of a Lesser God, which my best friend and I performed in the Drama Festival that year. I played the entire role in sign language and we won the award for best one-act play.
When we moved back to the states when I was fifteen, it was back to starting over again. This time we were transferred to middle-of-nowhere New Mexico. I was starting my Junior year of high school. Luckily, a few classmates of mine from my school in England also ended up there so I was not totally alone. My confidence was up anyway and things were not so bad starting a new school. Being dissatisfied with the Theater department at my new school, however, I gave up drama.
I met my first boyfriend in the spring of that school year. I was truly in love and he said he loved me, but he only wanted one thing from me. He dumped me for another girl in the first week of our senior year. I was devastated, and the experience reaffirmed my lifelong belief that I would never marry or have children because no man would ever truly love me because of the way I looked.
My dad retired from the Air Force before I graduated from high school. My parents had also bought a house the year before. Little was ever said about pursuing more surgery or orthodontic work for me. With my dad's impending retirement, he could not afford to pay for any more orthodontics. I remember my mom telling me about my aunt paying for surgeries on her own after she became an adult. It was expected I could do the same after I graduated and got a job.
In my Senior year, a friend, whose name was David, whom I had gotten to know through my ex-boyfriend, came to school one day wearing an Air Force uniform I had never seen before. He told me that it was a Civil Air Patrol uniform. He told me a little about the organization and ended our conversation by inviting me to a meeting. I had always been interested in flying and was considering joining the Air Force to follow in my father's and grandfather's footsteps. It was about three months later when I made it to my first CAP meeting. There I met David's family who were all members of the squadron. After a month or so his mother had put him up to asking me out to the prom since he didn't have a date, and I certainly didn't have one (nor did I expect to be asked by anyone). We were just good friends (as it turns out he is homosexual), but I guess his mom wanted to have a complete set of high school memories for him. We had a good time at our Senior Prom.
After graduation, I was ready and on my way to join the Air Force. The only hang up was my medical history. Sometime during the months of waiting for the "yeah or neigh" from my recruiter, David and his mother and step-father sat me down and convinced me not to join the military, but to consider college instead. My dad, who wasn't in the position to fork out the cash to get my orthodontics done, was definitely not going to pay for any college. David's stepfather, Bradley, was career Air Force and had obtained a Master's Degree over the course of his career. He explained that the Air Force is not as beneficial for enlisted members as the recruiters make it out to be, and suggested that I go to college first and then enter as a officer later if I wanted. I considered their advice and told my recruiter, and my parents, I had changed my mind. I started classes part time at the local Community College that fall.
David went to a private university in Texas and eventually we drifted apart. I worked part time at the local Wal-Mart, continued going to college classes part time, and remained active in Civil Air Patrol, eventually changing my status from cadet to senior member.
The following summer, I was offered a job as a receptionist for an ophthalmologist who sons were cadets in my squadron. At that time I was still attending class in the evening and decided that I would like to pursue a Bachelors degree in biology. I couldn't do that in community college, but I could not afford to go to a four-year university. Brad, who was putting David through private university, convinced me to apply for students loans and a grant that was available to military dependents from the Air Force. Again, I took his advice, applied for, and won the Air Force grant. Together with some student loan money and other financial aid, I had enough to go to the local four-year university.
I left my job at the ophthalmologist's office and went to college full time to pursue a degree in Wildlife Management. I entered Army ROTC as an elective since I hadn't chosen a minor yet. I also took a rifle marksmanship class for fun, and then ended up qualifying for the Varsity team by the end of the semester. By the spring of my second year, I was awarded a partial scholarship in Rifle, which helps lessen the need for those loans I so dreaded. I also won an ROTC scholarship - almost. The medical history became a hang up yet again. By the time the Army decided to give me a medical waiver for my unrepaired cleft I had changed my mind about the scholarship. The deadline for accepting other financial aid came about, if I accepted one I would lose the other, and if ROTC fell through I would have nothing. I completed the classes required for the two-year ROTC basic course and began courses for a minor in Anthropology.
In my junior year, I was awarded a full athletic scholarship for Rifle that covered tuition and books. That same year Bradley, who was now retired from the Air Force and working for the State welfare office, enlightened me with information about a State program that pays for full medical care to cleft affected children until age 21. He also said that every state had a similar program. I was about to turn 21 years old that fall. I went to my mom to ask her why I was never told about this and if she had known. The answer I got was "Your plastic surgeon was the best," and "I didn't think you wanted more surgeries." Yes, I will admit that the tongue-flap surgery proposed by my orthodontist when I was twelve years old freaked me out a bit, but the decision about surgery should not have been left solely up to a teenager. I let the argument end there.
Brad put me in contact with his colleague at the Children's Medical Services Department and I was scheduled to attend a cleft palate clinic. Of course, I was met with many surprised looks due to my age. Before I could get the benefit from CMS, I turned 21. However, I met the surgeons and doctors and started a base on which I built my crusade to get my cleft fixed that would last more than six years. Since I was in college, I was eligible under my dad for Champus benefits until I was 23. I traveled 250 miles to see the oral surgeon to get a letter from him to justify the surgery to Champus, and the hardest part, to get them to cover the required orthodontic treatment. The oral surgeon wrote a great letter, and the team orthodontist did x-rays and impressions at no charge in order to get this treatment for me. It was a full eight months before I got the authorization from the insurance company for the orthodontics. By this time I was already 22 years old.
In the mean time, I had begun speech therapy at the University Speech and Hearing clinic. I attended therapy there for three semesters. By my senior year, it was clear that the surgeries would not take place. I was about to turn 23 and lose my insurance; there would not be enough time to start the treatments before surgery.
I graduated from college with the highest honors, Summa cum Laude, in May 1996. I was working as a temporary worker at the local State Park full time to begin pursuing a career in the Parks Department. That summer, Brad divorced his wife of ten years, and we became very close. Eventually we fell in love and moved in together that Christmas. In February 1997, I landed a full time permanent Park Ranger position 150 miles from our home, and I decided to live there during the week and return home on weekends. I bought a brand new car to replace the old one my dad had given me that would not survive the 300-mile weekly commute. Bills and expenses from starting my new life, and helping Brad through his divorce would keep me from pursuing any surgery for a while.
Problems with his job and harassment from his ex-wife sent Brad into depression. He wanted to work with aircraft, which was his passion. He started applying to Aerospace companies all over the world. In January 1998 we both took a week off work and went to California to visit his family, and check into job prospects. A job interview in Sacramento led to a job offer in Riverside, California. He asked me if I wanted to go with him and I said yes. On a weekend in late February 1998 we packed all of our stuff in a U-Haul and headed for our new life.
When our relationship started to take off, Brad and I had decided that we wanted a family together. Twelve months after moving to California I became pregnant. Three months later, on May 18 1999 we were married. During my second trimester, we requested a referral to a nearby University to have an experimental 3D ultrasound done to see if my baby had a cleft. The ultrasound turned out negative for any fetal malformations (and I have a 3D-ultrasound film of a perfectly beautiful little face!) I endured a wonderful pregnancy, and after forty-two hours of labor, Jacob was born on November 18, 1999.
About eight months later, in the summer of 2000, I resumed my pursuit to have the remainder of my cleft repaired. Brad receives health benefits under his military retirement and so we elected to cover the family under Tricare (formally known as Champus) after Jacob was born. So, here we go again. Tricare paid for me to attend a cranio-facial clinic at the local Children's Hospital (again, the surprised looks, as I was the only adult they had ever seen that still had an unrepaired cleft). I was given the same prognosis as before - I needed to pursue orthodontics and oral surgery. At first, I was told that the orthodontics were not covered. I had to fight with the Tricare health benefits advisor to convince her that they must pay for orthodontics because they were going to do it five years ago - and in fact, they still do. Although the oral surgery was approved to be done locally, I was bounced around the Tricare referral process for a while to find an orthodontist that was included under Tricare's plan. At least this time around there was no time constraint while waiting for the approval. Finally, I was referred to an orthodontist in San Diego. This orthodontist is part of a cranio-facial team at the Navy medical center, and despite my experiences with military health care, the doctors (and the hospital) have impressed me so far. I decided to accept the referral to the oral surgeon there. As of this writing I am in the process of getting braces and scheduled to receive oral surgery in April 2001. I guess we'll see how it goes and I'll keep everyone at Wide Smiles informed.
For now, good luck to all and God bless!
Amber
(Age 27, bcl&p)