I was born with a double cleft lip and palate. In my life I've fought my fears and exceeded other people's hopes. This is what I've learned.
I was born with a double cleft lip and palate. My mother said the doctors had told her it was caused by poor nutrition during the first trimester of her pregnancy. Knowing that started me on a quest for good health—physical, mental, emotional, and spiritual. I read, experimented, and observed the results as my interests and awareness of health expanded over the years. I'm now 67 years old, and it's time to share what I've learned.
During the first trimester of pregnancy, a fetus develops in bits and pieces, which then fuse together to form the body we know of as a baby. In my case, the bits and pieces didn't fuse together around the mouth region. Hence, I was born with a hole in the roof of my mouth and blobs of flesh where my upper lip should have been.
Corrective surgeries affected the way my teeth came in, which were massively crooked and, in one case, completely switched around. Straightening the teeth took a lot of work and time but, thankfully, it was one "pre-existing condition" that my father's insurance was willing to cover.
As I struggled to understand why I had been born this way, and how to deal with other people's expectations and reactions when they saw me, I began to learn some pretty important survival skills. One of them was the ability to express myself to others - to answer questions about why I looked the way I did. Another was observing and owning my own reactions to others.
Over time, my interests expanded from treatments and prevention to nutrition, psychology, spiritual health and, eventually, the health of the earth itself (e.g., air, water, and soil pollution) and how those things affect us.
Until I started imagining what I would share with you, I didn't fully realize how deeply the birth problems had affected my life. It could even be that my thinking and way of living is different from most people at its core . . . which may be a hidden blessing. Also hidden may be additional pain and/or resentments I haven't found yet. Sharing these with you, along with the wisdom they produced, will hopefully help you to understand your situation better or better empathize with someone you know.
I plan to write several articles, all from personal experience backed by research. Whether you are a parent, friend, spouse, or the one dealing with a cleft lip and/or palate, I trust you will benefit to some degree by reading them and the comments of those who respond to them. And I do encourage you to respond. Although a cleft lip is highly visible to anyone who looks, to those of us who have one it's a privately hurtful, hence delicate, topic to discuss.
One reason I intend to write about my experiences is because, when I looked to see how much had been written on the topic already, I found a bunch of clinical articles but nothing personal. No one talks about their actual experiences, except in the comments section in reaction to other articles. There's a silence that needs to be broken and I see a role for me to play here.
Physical Concerns Regarding Cleft Lip & Palate
The first reaction a parent has to a new baby with a cleft palate and lip/s is usually, "OMG, what happened?" They want to know what a cleft lip/palate is and what caused it. They want to know how to deal with it, how to feed and protect their child, and what they can expect of the future. They want to know if the child's brain has been affected too.
My mother was looking forward to bearing a perfect firstborn. When I showed up, she was utterly ashamed. Not because of me, but because she had messed up again (in her family she was "known" for it). As with many people, she had her own issues that resulted in her blaming herself, whether or not anyone at all was to blame in reality. Luckily, her mother (a master teacher) and my father stepped in to help and together they found out the following:
- The kinds of treatments available.
- What kind of diet and feeding practices I needed.
- What kinds of treatments insurance would cover.
- How to help me learn to speak properly.
- How to deal with teething, dental bite, and treatment.
- And, almost as important, how to prevent another occurrence.
Here are a few helpful links to get you going, if you're in need of this kind of information right away.
- Cleft Lip and Cleft Palate
Children can be born with a variety of cleft types and with variable severity.
- Cleft Lip & Palate | Health Insurance | State Coverage Laws
Most health insurance covers aspects of orofacial cleft treatment, but many families are still denied. How to appeal & state laws that guarantee coverage.
Life Concerns for Someone With a Cleft Lip and/or Palate
As I grew I began to have issues of my own that only I, ultimately, could deal with:
- I worried about how much people really noticed, and what I should say when kids asked about the scars. My parents helped a lot here, explaining where the scars came from.
- I learned how to handle mockery and how to turn potential bullies into friends - or at least, how to handle attempted bullying.
- I always wondered how my younger siblings dealt with having a sister like me. I still don't know. Were they protective of me or were they ashamed of people knowing I was their sister? Did they resent the extra time my parents spent with me? Or did they feel sorry for me and try to help however they could?
- I hated that some people thought I might be stupid. I found ways right away to prove that I wasn't, but I still sometimes have to deal with it.
- It was tough blending surgeries and braces with the rest of my life, but I had supportive friends and teachers. Friends even wanted to sign and draw flowers on my nose cast when I started the second set of surgeries in college.
- From somewhere I had to develop the courage to create the kind of life I dreamed of, beyond what other people thought was possible for me. I often felt like I was fighting against people's expectations.
- I found that having scars in such a visible portion of my face actually negated certain careers for me. I learned to use my condition to shape my life interests - letting it benefit, rather than hinder my life.
- Then there's the competitive element of interactions with others. Especially in business, those who were more attractive than I automatically expected to succeed better. So where I succeeded, there was always someone who thought they should be more successful, that I should be on the bottom of the ladder, and who worked to make it so.
- And there was the huge issue of how and where I fit in a society that adores beauty. I was different. I couldn't ignore that. I decided to take advantage of that perception and BE different inside too.
- Romance, love, and marriage is still a concern of mine - still a sensitive area. That's mainly because I didn't want to marry for many years, although I was asked several times, but now I think I do. And I'm dealing with trust.
I intend to write articles about many of these issues and, as I come to a better understanding of my own experiences in the process, I may recognize other topics that might be important to you. I will also read your comments, so be sure to suggest it, if you want information on something I haven't covered here or if you have an issue you want dealt with first. We're all in this together. The more information and experience we share, the better world we can help create for everyone.
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.
Shining Tiger (author) from Altadena CA on April 09, 2019:
One of the best things my parents did for me was tell me what to say when other kids asked––how to explain why my mouth looked the way it did. In the younger grades of school my friends actually used to brag about being my friend. They'd say, "My friend had a operation in the hospital!" It actually made me feel good. Thanks for reading.
sallybea on July 19, 2017:
I enjoyed reading this very brave and personal story. I do recall a girl at my school who had a cleft palate and she had what was known then as a 'hair lip'. She never had an easy time of it but fortunately, she was able to have surgery to correct the deformity. Thanks for sharing your story.
Shining Tiger (author) from Altadena CA on July 07, 2017:
Thank you all. Just as you appreciate this article, so I appreciate your comments. They tell me I'm on the right track in sharing these sensitive experiences and motivate me to continue writing about them.
David Isaacson on July 07, 2017:
I appreciate your courage in sharing your story this way. Having known a woman with very similar issues for a number of years, I have always been curious about her differences but never wanted to ask and draw attention to it, or possibly make her feel uncomfortable. I suspected cleft palate and subsequent surgery, or possibly a bad accident. I figured if she wanted to share about it she would do so when she was ready.
I've always tried to ignore the differences and see her for who she is, and treat her as I would anyone else.
Knowing some of what you have lived with, and how you have turned your adversity to advantage in many ways, helps me understand her a little better, and helps me to empathize with her and anyone else with a similar condition. I hope she and others find your sharing helpful and an inspiration...I know I do!
Bill Holland from Olympia, WA on July 07, 2017:
Bravo! Now that's an article I totally enjoyed. The human touch is always better than the clinical. Like you said in the note to me, people need to know about what it feels like...emotions...the five senses...these are the things people relate to, and you related them perfectly here. Great job!!!!!
Dinandrea on July 07, 2017:
Pragmatic. Personal. Heartfelt. ...excellent. Thank you for this, Shining Tiger.
Shining Tiger (author) from Altadena CA on July 06, 2017:
Thanks Kathy - I'm looking forward to hearing from others too. This could be a powerful sharing.
Kathy Kane on July 06, 2017:
Really well written and interesting. Thank you for sharing. My son was born with a cleft palate and dealt with many of the same issues you did. Looking forward to reading more and hearing others share their experiences.