Sometimes in college I'd take five steps forward and two steps back while trying to find my true sense of self while pushing my self-esteem up to the next level. I started to place myself closer to the center of attention in social situations and tried to bring as much into conversation and activities as possible. I would however, become weak from time to time and on occasion retreat to my "automatic standing place for the outsider" at social gatherings.
As I took more chances and gave others the opportunity to get closer to me through the years, I had more positive experiences than negative ones to look back on in my life. This has made me much stronger and happier. Through time, I was able to let a lot of my insecurity and negativity go and reel-in as much of the positive that I could catch every day. And my bait: A smile, sincerity, selflessness and an outgoing nature.
One Of This Month's Featured Families!
September 2002
Lisa
Unilateral Cleft Lip and Alveolar Ridge
New Jersey
My Cleft Story
By Lisa
I was born in 1966, the last of four children, with a complete unilateral cleft lip and some gum involvement. There has not been any known clefting on either side of my family. My mom had suffered a major hemorrhage in her first trimester of pregnancy with me, and even though there are no known causes for clefting, we feel that this hemorrhage combined with my mom's poor health had something to with it. My sister had already been born with spinabifida, torticollis, heart problems, and bone diseases. Some of her defects are considered to be linked to a maternal deficiency in folic acid. Clefts are also being researched in the link to folic acid.
In between orders of protection against my father, going ahead with the divorce and going through all of this alone, she stayed as strong as she could while preparing for my surgery. I was fed formula through a syringe until then. My mom said that even despite that, I was ironically an easy baby, that I was beautiful and that she loved my smile (even with my cleft). She also said I smiled all the time.
My lip surgery at four months was a huge success, except that on the second day post-op, an intern put me face-down in my crib and I ended-up rubbing my
face to the mattress, causing a few stitches to pop out. My mother brought it to their attention and they ignored it. Too bad, because I ended-up with a hole in my lip from this (approx. ½ a cm).
Times were tough for my mom and siblings already, and having to deal with getting through my surgery and recovery made it hard for my mom to cope. As a result of this inability to cope and depression, not long after my first surgery she was hospitalized and even had to undergo "shock treatments." My siblings were temporarily split-up and given to different relatives and I was put into foster care. My foster parents became attached and wanted to adopt me. My foster mom bought me some pretty clothes and took me to a professional photo studio to have my first picture taken. (When I was born, the hospital never offered to take my first baby picture like they routinely do, and my mom says that this set the tone for not having any pictures taken of me until after my surgery). When my mom came to pick me up from the foster home, the nice woman gave my mom a big 8x10 copy of the picture in a frame and cried her eyes out as she handed me over to my mom. They knew my mom was now very poor and might not be able to afford to get a studio picture taken of
me for a long time, so they were so happy to be able to give her the picture. My mom was always grateful for this wonderful couple and for how they loved and cared for me. They already had six kids of their own and still wanted to adopt me (clefted or not). The picture still sits on my mom's headboard in the same frame it came in. It means a lot to us.
I blended-in well with other children in pre-school and kindergarten, but was initially placed in a "special needs" first grade class (without my mother's knowledge). It was assumed that since I had this facial birth defect that I must also be developmentally slow. This situation was
corrected when a school social worker visited my class and discovered the mistake. She had the school test my physical and academic skills and I was immediately placed into the most advanced class for my age group and I excelled in all areas. I was brought up to be respectful, polite and not to pick on other kids. I really didn't get picked-on for my cleft much until around 9 years old, but as a child I felt like I was always struggling to be accepted. Luckily, I was always interested in physical fitness. I really shined on the ball
field and in the gymnasium. I practiced every sport, all the time (by myself or with the kids on my block) and made sure the kids at school respected me for something. Being good and dance and sports was a real self-esteem and confidence booster my entire life.
Even though I was very active and bright, I didn't have that hard shell or tenacity to defend myself well against some of the teasing and alienation, which made me an even bigger target. I lost most of my girlfriends as we reached dating age.
They made it clear to me that if they hung around with me a lot, it would scare the boys and popular kids away. They moved on and I was lonely. I've always persevered, though. Even when I've been feeling my lowest, I got back up and tried a new approach or strategy to find friends and happiness.
I was very fortunate to have a few good teachers, too. One teacher in particular (Miss B.), not only gave me a great overall education, but also taught me to be strong and to take what the world has to offer me, rather than to feel sorry for myself and let the other kids make me feel unworthy. She knew I came from a
I was and what a beautiful woman I was going to be. Whether I was or not, I think it was a good idea. My mother taught me not to take any harassment from anyone and drilled it into my head that I was also smart and talented. I know that instilling me with so much self-worth was one of the main reasons I ended up so happy in life. I came from a family with no cleft history, but I think they handled it like "pro's." And in my opinion, they handled it in the best way possible. God knows their plates were full and they had their own troubles to deal with. I'm so glad they took the energy to be sensitive to my needs.
I may have been feeling like a cute little girl, but I had crooked and mis-shapen teeth as a result of the gum involvement from the birth defect. This was causing malocclusion of my jaw and I underwent some dental surgery, wore braces for three and a half years (ages 12-15), then a painful retainer for another six months.
My teeth seemed straight after all of the hardware was removed, but in the area of the cleft, my teeth were still mis-shapen. And about a year after the hardware removal, my teeth all went back to their original positions! The Dr. blamed it on the clefting and gum involvement. So, when I was 28, I had saved-up enough money to get porcelain laminates and bonding which I'm still extremely happy with. I get compliments all the time on my beautiful smile, and I smile a lot! I feel that smiling and having a positive attitude are the two main ingredients in my personality that continue to help draw wonderful people to me in my life. And for that, I am less lonely, happier, more confident and feel more comfortable contributing to this world while being able to "spread a little sunshine" to others.
I was very fortunate not to have to require too many surgeries. But I have had a lifetime of throat and sinus infections, which my ENT says were related to the clefting. He says that since I had a complete cleft lip that went all the way up my nose, that my air passageways were obstructed and not lined-up well. As a result, I had a total rhinoplasty reconstruction to fix the deviated septum in several places (along with some cosmetic nose and lip work) when I was 26. My nose and lip are still somewhat crooked, but better. I don't think that a lot of people I meet these days (unless they have already known clefted people) would be able to guess right away that I was clefted and had these surgeries and procedures done to create my look. I had another lip revision surgery when I was 29 to try again to close up the "hole" that the intern
caused when I was an infant. It was somewhat successful and I am pleased that my scars are now barely noticeable. My breathing is tremendously better and I am grateful for that, especially since that was the most important aspect of the surgeries. I still suffered too many throat infections, so I had my tonsils & adenoids removed this year at the age of 35. I wish I hadn't waited so long to have that done, it was super-beneficial.
Yes, I've had some successful surgeries as an adult that contributed to an increase of self-confidence. But, I feel that when I finally decided to surround myself with positive, faithful, caring people who were also encouraging me to succeed, I really started to excel in life. There was no longer room for self-doubt, negativity and malingering. I've never felt so comfortable about how God has created me as I do today. I am very pleased with my life and I'm surrounded with people who love me. I know I could never dream of a better husband than the one I have. I was thirty-one when I met him and we married three years later. I have dated plenty of nice guys (and not-so-nice guys), but no one could compare to this adoring, supportive, intelligent man. I am very blessed.
I also feel very blessed to be a self-made, successful professional doing what I love for my life's work. I own my own post-rehabilitation facility and also manage a hospital-based fitness center. I was always involved in physical fitness and interested in the medical field. I graduated college with a degree in physical therapy when I was twenty-three and became certified in various specialties of professional exercise. I really enjoy helping others in their physical rehabilitation and helping them make permanent, healthy lifestyle changes. At my office, I focus on women's health
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I'm glad my mom doesn't blame herself for causing it, like some moms end-up feeling. Maybe it happened because my father was beating her up every time he came home drunk from a night of cheating on her and spending all the family money on booze. Maybe it was because of this abuse, that she didn't eat right and felt sick all the time, was totally malnourished and anemic. She was enduring all of this while trying to care for three other small children, becoming physically and mentally destroyed.
My mom was overwhelmed when she learned her baby was clefted. Initially she was told by the Dr.'s that she would have to wait until I was five years old before I could have my first surgery. My mother immediately became distraught and depressed. She hadn't received any information other than that. She was left all alone in her hospital room and wasn't even given instructions on how she was supposed to feed me. On the second day of her hospital stay she cried constantly. A cranio-facial plastic surgeon on staff had been informed of my birth, and he paid a visit to my mom. He showed a lot of concern for her and told her that he was surprised to hear what the other Dr.'s had said about waiting so long. He left for a while and returned to her stating that she and I were going to be in good hands and that he arranged it so that she should bring me back in four months to have my repair, and that he would do it himself. He made sure that she was now given as much information as possible and he said he would be there for her if she had any questions. This made a world of difference to my mom, who said she couldn't believe the relief and hope she immediately started to feel.
When she gave birth to me, my father was off bar hopping, avoiding responsibility as usual. A few days later, when someone rounded my father-up and forced him to go visit his wife and new baby at the hospital, he took one look at me and said, "That couldn't be mine, because I could never be the father of a baby with a birth defect, especially one that looked like that." And once I was home, my father's mother would visit and look at me as if I were a monster and then give my mother a look as if it was her fault that I looked this way. She'd sneer and stare and even make comments in a nasty tone to my mom like, "Just look at that baby!" My father continued not to deal with my cleft well and it was just more evidence that he was never going to be able "step-up to the plate" and be a good father and husband. Actually, I believe my cleft was a blessing from God, because it seemed like the "final straw" that helped my mother finally decide to divorce my father.
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issues and I am currently in the process of trade marking a breast cancer recovery exercise program. My line of work requires me to be assertive, caring, positive and constantly in the "public eye." Having people look at me so closely and having them sometimes catch a glimpse of my lip not cooperating while I talk (I call it the "lip freeze") has made public speaking challenging. I started out real scared, but I put myself out there. And in time I became very much respected by my colleagues, my clients, their Dr.'s and the community. I've learned that even though you may be terrified to go for something, you sometimes have to just "close your eyes and jump into it." When I look around at the things that make my days so fulfilling I know I'm so glad I "jumped." I think that when I felt like I was respected by people it gave me fuel to
rev my engine and get going. I believe it started with a teacher or two, some experiences in college and in the beginning stages of my employment life. I had to weed out the bad influences and feed off the good ones. I had to pave my own path and be strong.
Like a lot of other people, I came from a rough beginning but made it through. I just plugged along ever since, trying to keep a smile on my face, having faith in God and focusing on positive things. When I'm not working in post-rehab and fitness, I spend time volunteering for
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charities. I feel like helping others is my main purpose in life. I feel like I'm giving back to the world that has helped me.
difficult home-life, but with every last bit of energy, she would try to find ways to help me overcome my weaknesses and help me tap into my strengths. Not only did I gain so much knowledge in her class with her cutting edge teaching techniques, I also began to truly believe in myself and gained some very valuable confidence. I'll never forget her.
My time in high school wasn't too bad. But I continued to have a serious longing to fit-in and be accepted, which was the hardest part for me. No matter how much I believed in myself, I felt a lot of my peers just seemed to disregard me. I would find myself at social gatherings gravitating towards the outside of the gathering and standing alone (maybe that was my safe place or where I thought I belonged, I'm not sure). I joined a Christian-based youth group in junior year, which really helped a lot.
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My mother and siblings never made me feel like I looked any different. My cleft was not ignored, and never their focus. I can count on one hand how many times my dad even saw me as a child due to the divorce and his drinking, so it's not surprising that the subject of my cleft never came up with him. If the cleft subject ever came up in my mother's house, my mom would always rave about what a wonderful job the nice Dr. did and that would always make me feel very lucky and good inside. My family also made regular comments about how beautiful
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Stories of Craniofacial Care and Inspiration
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This cleftAdvocate page was last updated March 25, 2014
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