“I was born the third and last child of my parents. Each time, Mom didn’t ask gender. We were all surprises to them. Mom had a normal pregnancy with some added ‘morning’ sickness throughout it all. I was her ‘due date’ baby. She went in the day before and had me the morning of November 6th. When I came out, the doctor said, ‘It’s a girl, but she’s got a cleft lip and palate.’ Mom saw me and said, ‘Oh, a hair lip.’ She wasn’t afraid of the child she and my dad created. She was going to love me, and has loved me, through it all.
My great aunt had a bilateral cleft lip and palate, and I have a unilateral cleft lip and palate. There’s also a great great aunt on my dad’s side who had cleft lip and palate (I’m unsure if hers was bilateral or unilateral). Fast forward to feedings — Dad strangled me a time or two. I’m sure that scared the living daylights out of him. A sweet lady, who was a family friend, showed my mom and dad how to feed me. I had these bottles that were a soft plastic with longer nipples on them, so the milk would go straight down my throat essentially. They would squeeze, because no palate meant I didn’t know the right way to suck.
I got to go home and hang out with my big sister and brother. A few months later, I had lip surgery. I had an amazing plastic surgeon, Dr. Michael Boyajian at Children’s Medical Center in DC. Valentines Day of 1992, I had my lip closure surgery completed, or as my momma says, ‘The day I got my smile.’ I had a Logan bar in place and elbow restraints, which my awesome nurses made out of tongue depressor for my arms, to keep me from touching my face.
After my lip closure, I had to sleep in my car seat or on my back. I was fed with a breach feeder, large syringes, and those Mead Johnson bottles; they were soft sided, so Mom and Dad could place it in my mouth then squeeze for me to intake formula. For some reason, I think Dad was the one who held me for this surgery, as they put me to sleep. He has always said how weird it is for you to be holding your healthy baby, and for them to just go limp once the anesthesia kicks in. I can only imagine the emotions that day.
Mom always stayed with me on my overnight stays, while Dad had to go to work. She’s like my security blanket almost. Surgery equals Mom will be there. My palate closure surgery occurred around September of 1992. None of these surgeries I remember. I was back in the OR two more times after that. In 1994, Dr. Cynthia Tifft, a pediatric and genetics doctor, evaluated me. It was at this appointment, she determined I was a member of a multi-plex cleft lip and palate family. I’m still trying to learn the ins and outs of that meaning. She was also able to determine the re-occurrence risk is 5 to 10% for my future children. Even knowing this risk and having this information, I still have it in the back of my mind, if for some reason it doesn’t skip a generation like it did before, Dr. Boyajian will probably be retired, so I’d have to put faith and trust in someone else.
Through those first few years, I can tell you stories about how the hospital I was born at wasn’t going to take my newborn photo, because they didn’t think my parents wanted to remember those times. My mom insisted; she had her other two children, so why would she not get her final? There was one appointment when a little boy came up to me to tell me I had fat legs, which I always have to laugh about. Cleft lip and palate children don’t always get all the food they need, so being a chubby baby/toddler was a good thing.
In grade school, I learned all the fun things and made all my friends. Sammit and Shana were the best, and are still my best friends. They went through all my moments with me and always supported me. August of 1996, I had my ‘final’ surgery, pharyngeal flap palatoplasty, a cleft nasal revision to help fix a mild typical cleft nasal deformity. I was so excited for that surgery; weird, I know. They gave me medicine to relax me, so I’d practically be out by the time I went in the OR. Epic fail. I was wide awake and got to see everyone involved. I was out of school for a little while, and my teacher had all my classmates write me get well notes. It was every kid’s happy moment to have so much support and so many well wishes. I went back to school, and the braces journey started.
I had braces for 10 years. Yes, you read that right. I had three different sets, because one set was only meant for a short time, and the other time, I needed a break. One of the orthodontic procedures I had involved me missing the maxillary left lateral incisor along with the maxillary left second bicuspids. Due to this, it was decided, once ready, I would need an implant. Dr. Carol Orlando was my dentist, up until about 4-5 years ago. She was on my case at the hospital, and we followed her to her practice and stayed with her until I was 22 or 23. She introduced my parents to my orthodontist, Dr. Thomas Horton. He did amazing work. They’re husband and wife, and it made my dental care so much easier. I’d see one, and then, go see the other. They weren’t close to home. We are in Southern Maryland, and they are in Bethesda. So, practically once a month, we took the 2-hour drive to go see them and get all the necessary work done for that month.
In the early 2000’s, when I first got braces, I had a palate expander in my mouth. My parents had a key to it, and they would have to turn it every night to help widen my palate. Once this was done, I went back in May of 2000 and had my final procedure done. They closed the alveolar cleft with alveolar bone graft. I got my braces off in either late 2009 or early 2010, and during that time, I also got my implant process started. I was missing teeth pretty close to the front. Dr. Horton thought about that during my treatment, and I’m so grateful. He shifted my teeth a lot, but I don’t have a fake tooth out front for the entire world to see, it sits a little further back on the side. Being in high school and dealing with kids, I think Dr. H was definitely looking out and thinking of all these things during that time.
My classmates in elementary school, and even middle school, were always nice and never mean. Real world hit in high school. The bullying started. That’s when I can say I got tough skin. Most of the time, I ignored the comments and let them roll off my back. Except for one time. It was a long school year, or more of a long bus ride. This kid (he doesn’t deserve to be named) started talking about my scar on my face and just making so many mean comments, to where it really got to me. I don’t know why, out of all the things I’d heard, it had more of an effect. Pep rally my sophomore year, he continued to make comments. My big cousin, Brett, just so happened to be a senior in high school. If it weren’t for me finally opening my mouth and deciding to confide in him, I have no doubts how the year would have continued. Brett took care of my bully. When my bus driver, Mrs. G, caught wind of it all, she moved his seat to the front for the remainder of the year.
It was that moment, I knew I wasn’t alone. I went through the rest of high school with my head high. I got a senior picture that displays my scar beautifully. I went back to Dr. Boyajian for an ‘I’m 18; it’s my final visit.’ Or so I thought. He said, ‘You’re perfect except for one thing…’ You see, when I’m fully relaxed, my lip has a gap. I guess that’s what I’d call it. Like a little air hole to breathe out of. I think the technical term is that my upper vermillion was asymmetric and had a slight whistle deformity. Dr. Boyajian wanted to fix that. One final surgery to truly be ‘perfect.’
But, I was 18 now, so my parents left it up to me. Dr. Boyajian mentioned there was a new doctor he was showing to one-day fill his shoes. No offense to him, but I was sticking with Dr. Boyajian, no matter what. We discussed this surgery in its entirety — what it would do, how it would affect my life, pros and cons, and how many more scars I’d have. You name it, I thought it. I made the decision. No surgery. I was under anesthesia four times, but had a total of seven different procedures done. I was happy with my imperfections and didn’t feel this last surgery would benefit me in any way. My decision was made, and supported by all.
My worst case of bullying came from none other than an adult. I was at work, doing my thing helping customers, as normal. Out of nowhere I got asked, ‘Did you get kicked in the face by a horse?’ To tell you I was hurt doesn’t do my feelings any justice. In that moment, I saw red. But, I corrected this lost soul. ‘No, I was born with cleft lip and palate.’ I had the support of all my co-workers when that happened. Maybe it’s because I have it, but I can be in a crowded room and point out anyone else who has it. I would never ask a person such a mean, heartless question as he did to me.
Let’s speed up to about four years ago. I worked in a doctor’s office and was part of the front desk crew, at the time. The nicest patient came in, and I’ll never forget her words. ‘I don’t mean to intrude, but your scar is beautiful. Your doctor did an amazing job.’ If I recall correctly, she had a newborn grandchild with cleft. I gave her hope for her grandchild’s future. That’s something that still gives me chills when I think about it.
My decision to share my story doesn’t come lightly. Thanks to Sammit, I knew it was something I should do, with her added support. There were moments throughout my story that hurt, but I share them so the many parents out there can know their child was given this genetic condition to show how strong they are, and how strong they will grow to be. I’m now 28, and I haven’t seen Dr. Boyajian, Dr. Orlando, Dr. Horton, or their staff in many years. But they are a major part in my story. In 2014, I requested my medical records from the Children’s Hospital, which is why I’m able to know so much about my journey. I would not change a single thing. My parents, siblings, grandparents, aunts, uncles, cousins, best friends, and boyfriend have all made my journey special. I am cleft strong. I am cleft proud.”
Read more stories like this:
‘There was something wrong with his face. ‘It’s not fair! I wasn’t supposed to have a baby like THIS.’ My husband kept telling me the doctor was wrong, but I knew otherwise.’ Mom a ‘blubbering mess’ after ultrasound reveals son’s cleft lip and palate
‘I can’t look like this anymore!’ I begged my parents for surgery. I’d arrive a new person and no one would have anything to say about my looks anymore. I was sure this was it.’: Woman overcomes bullying for cleft lip and palate
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