Let’s Talk About Clefts

Each year, the month of July is the CDC’s Cleft and Craniofacial Awareness and Prevention Month. I actively worked to raise awareness this year during July, as I have for the last several years, but I must admit I found myself at the end of last month, wondering if my efforts on social media during the month really raised any awareness of craniofacial anomalies.

The answer I came to is that despite everything I have done, there is always more awareness to be raised. So, instead of worrying about what I didn’t do during the official awareness month, I’m picking up where I left off and continuing the conversation about clefts and craniofacial anomalies in August and beyond!

I was born with a unilateral cleft lip and palate and have been a Cincinnati Children’s patient since I was a newborn.

Most people associate the word “cleft” with the small ads in newspapers and magazines, and TV commercials for charitable organizations that fund cleft repair surgeries for children in developing countries.

While the help these organizations offer is life-changing for the children who benefit from their generosity, their marketing tactics foster an incredible misconception that my life and birth defect are “fixable” with a “one and done” operation.

To-date, I have had 10 surgeries related to my cleft and I know people who have had more than 40 surgeries to address many of the same issues I’ve experienced.

Modern surgical techniques and the caring hands of highly-skilled plastic surgeons have given me a smile I am proud of. But I will always have a scar and will endure odd looks and ignorant questions.

The unfortunate thing about having a facial anomaly is that the face and skin are vital in first impressions. When you meet someone who was born with a birth defect or injured in a way that contorts their smile it is gut instinct to be put off.

That’s why Hollywood has made a killing off of our birth defects – bet you never put that one together! I will indulge your curiosity. After you read this article google some of these titles; The Hills Have Eyes, Goonies, The Lone Ranger, A Nightmare on Elm Street, Platoon, The Craft, Hannibal, Phantom of the Opera. This barely dents the list of movies that associate scars and facial anomalies with evil, twisted, demented, horrifically tortured characters. Scars do not define a person but it is sometimes hard to fight against initial impressions.

No matter what surgery I undergo, or how well it is performed, I will always have scars that “normal” people will never have.

Growing up, people would stare and point and kids would whisper. As I’ve gotten older, it’s become easier to ignore, but please know that instead of staring, I’d much rather we make a conversation of it than have an abrupt moment of eye contact followed by embarrassment.

Deep down we are all humans looking for a friend in this big world. We are all surrounded by people who have incredible stories to tell.

For the past several years I have had the opportunity to speak at an annual event called “Face it with Friends,” which was held at Cincinnati Children’s a few weeks ago. During the event, my fellow patients and I learned from our care team, we talked about experiences, we helped each other over emotional hurdles and we learned from experts from Saks 5th Avenue how we can apply makeup to enhance our facial features and be beautiful in makeup.

It is always a privilege to meet new families and friends! There were 40 people who attended this year. Dr. Pan gave a presentation on some of the surgical options we have as young adults and then we bonded in small groups while having makeup sessions and photography sessions.

One of the highlights of the event for me is the jaw surgery panel. Jaw surgery is my particular topic during the event. It is a hard surgery that has many benefits for those of us whose birth defect has disturbed the growth patterns in our face. I share my story and experience with the operation alongside some friends who have also undergone the procedure. This event is a beautiful opportunity to meet others and reconnect with friends who I have met along my journey here at Cincinnati Children’s.

In July, I asked many of my friends who also have clefts or other craniofacial anomalies what they wish everyone knew about their facial features. And here are the top three things I got back:

  1. Cleft repair is not “one and done” and it takes a lifetime of work to be the people we are. Surgeries, speech therapy, audiology appointments and interventions, dental operations, decades of braces, and bone grafting.
  2. Being born with a birth defect is blameless and is not a sign of anyone’s sins or faults. Many of the causes of clefting are still unknown. There are genetic components but most clefts occur for unknown reasons. It’s all about perspective.
  3. Everyone smiles in the same language. Each of our smiles is different, some of ours may be more than others, but we all feel joy and happiness. There is no shame in smiling with missing teeth and mismatched lips. We have all worked hard to attain our smiles, please don’t judge. We are all humans in progress.

I am proud of my friends that they had the courage to put these things out there. I hope you will take these things to heart and greet people who have visible differences with a smile and understanding that they’ve been through a lot.

If you have questions, or would like to request an appointment, please contact our Craniofacial Center.

Ashleigh Baker

About the Author: Ashleigh Baker

Ashleigh is a freshman nursing student at Xavier University. She was born with a Unilateral Cleft Lip and Palate and has been a patient at Cincinnati Children's since she was an infant. She says, "The thing that brings me the greatest joy is spreading smiles. Someone once gave me a bookmark that had that poem 'Smiling is Infectious' and it says 'I thought about that smile and I realized its worth, a single smile like mine could travel round the earth so if you feel a smile begin don't leave it undetected. Start an epidemic and get the world infected.' "

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Comments

  1. Kristina Baker August 29, 17:56
    Well done, Ashleigh! You have been and continue to be a true champion for those with craniofacial challenges. Thank you for your spirit and willingness to share your story.
  2. Mary Young September 01, 15:55
    Your blog post was enlightening & inspirational. I loved your point that everyone smiles in the same language...we all feel joy and happiness. There are moments that I realize I am an ambassador just by smiling. Best of luck to you in your journey.
  3. Cindy1963 November 10, 20:59
    My grandson will soon be 9. He was born with a bilateral cleft lip and palate. He has had 6 surgeries so far, and sees an orthodontist later this month. We have made a point of stressing that he is a normal boy, who happens to have clefts. He inherited it from his Dad who has the same, Before he was born, we worked with the hospital, who ended up ordering several types of nipples and bottles to have on hand so that when he was born, we could discover what worked for him. To date, the palate repair was the worst! no nos on his arms, and a liquid diet was tough. Now he is old enough to understand, so it's a lot easier.
  4. Michelle November 20, 15:46
    Ashleigh, Great story! I am glad to see that you are going to be a nurse and continue to spread your great attitude to patients! Our son, who is a twin, was born with a unilateral cleft. We stress to him all of the time that his cleft is just simply the way he was born. It is a part of him but doesn't define him. He is a joy and he spreads happiness. Other kids have been around him since he was a baby and they don't treat him differently. I know he will face challenges just like other kids but hopefully he will have the attitude that you have. Thanks for telling your story. It is brave and inspirational! Keep up the good work!
  5. LIndaT February 08, 13:57
    Ashleigh, you are very beautiful, and I am thankful for your witness and healing that you are already doing. I was born with a unilateral cleft lip and palate in 1957, and I am amazed at how far surgical procedures have come. Compared to my upper lip, I find people your age to seemingly have very little scaring. (I know, everything is relative!) I remember the heartache and shame when little boys made fun of me on the playground as a young child. I longed to have a normal upper lip, like others. As an adult, however, I have come to realize that there is no shame in having been born with a cleft lip, and my life is as typical as typical can be. I am married with 3 beautiful adult daughters, I played the clarinet in school, and I am now a pastor, preaching weekly. Your smile is beautiful, and I wish you much joy and happiness in life.
  6. Trailguide March 31, 01:01
    Having been born with a unilateral cleft palate and lip almost 67 years ago, I am amazed at the strides in facial repair. Thank you for your article, and the young ladies look beautiful. A lot of the surgeries performed at Cincinnati Children's when I was young, were more or less experimental by my surgeon Dr. Longacre. It is wonderful to see these advances.
  7. Kris April 24, 20:24
    Ashleigh, I loved your post! You are right, we all smile in the same language. I am 51 and have unilateral cleft lip and palate. I went thru a few surgeries until the 2nd grade. Then we found Dr James Lehman at Akron Children's. I remember having an 8 hr surgery that, back then, was relatively new in cleft surgeries. They took some bone from my Iliac crest to use for a graft. They even filmed it to use for teaching! I was in the ICU for 2 weeks. I have had a total of approx 14 surgeries. I am happy and comfortable with how I look. So glad to hear you are going to be a nurse. I am one too!
  8. Melodee May 25, 07:35
    What a beautiful young woman you are, Ashleigh! Thoroughly enjoyed your article and was certainly informed of issues I had not considered. You ARE succeeding in your goal of educating others--one person at a time. God bless you. and your studies (you are going to make an exceptional nurse.)