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Cleft and Craniofacial Awareness

Photo of baby Cade

CDC hopes to increase awareness and provide information about cleft and craniofacial conditions present at birth. Below, a mother shares her son’s story.

Michele’s Story

My son, Cade, was born in April of 2000 with severe cleft lip and cleft palate. I did not learn of Cade’s cleft during my pregnancy, so after his birth, I had a lot to absorb and learn very quickly. Although, at first, we were devastated and scared, my husband and I immediately embraced the challenges we faced. We were just as proud of our new son as if he had been born without a birth defect. Cade was given to us for a reason; we spent the first few months of Cade’s life educating ourselves about his condition and things we could do to make Cade’s life as normal as possible. Although there were things we had to do differently, we worked very hard to treat Cade as though there was nothing different about him. Before his first corrective surgery, we proudly showed him off, took pictures of him, and sent him to daycare, just like any other child. We focused on educating everyone we came in contact with, rather than sheltering him at home.

Photo of Michele's Family

When Cade began school, the other children would sometimes tease him. As much as it broke my heart when he was teased, we explained to Cade that everyone gets made fun of and that we all have insecurities. We asked our family and close friends to share their own experiences and insecurities, and encouraged Cade to address his differences. When Cade was the star of the week in school, he brought pictures from infancy and educated his classmates and teachers about his condition. Before each surgery, I joined Cade at school to talk about his surgery in front of his class. As a result, the other children became supportive and protective of Cade, rather than teasing him.

Today, at age twelve, Cade has had five reconstructive surgeries, five sets of ear tubes, and has many more surgeries to come. I admire Cade for his determination, confidence, and his caring and outgoing personality. He has learned to define his disability, not let it define him, and to use it to help others by telling his story.

Photo of school age Cade

“My goals are to continue to make people feel better about themselves and strive to become a professional baseball player,” says Cade. “If I had a message it would be to say, ’Look at me, not my disability!’”

CDC thanks Michele and Cade for sharing their story and pictures.

CDC’s Partnerships and Work on Cleft and Craniofacial Conditions

CDC and its partners are working toward preventing craniofacial birth defects (conditions of the head and face present at birth). CDC also is working toward our goal of helping improve the lives of children with these conditions and their families.

  • Tracking and Research: CDC provides assistance and support to states to track birth defects, including cleft and craniofacial conditions, and works to find out what causes them. Through this work, CDC and researchers have looked at things that might increase the risk of a mother having a baby with a cleft or craniofacial defect.
    • For example, compared to women who don’t smoke, women who smoke during pregnancy are more likely to have a baby with a cleft lip with or without cleft palate or a cleft palate only1.
  • Educational Resources: CDC works with groups, like the National Foundation for Facial Reconstruction (NFFR) and Operation Smile, to develop educational resources on how to care for children with cleft and craniofacial defects. These resources are for parents, health care providers, speech and language pathologists, and school counselors.
  • Health Services Research: CDC and its partners work to better understand how cleft and craniofacial defects impact children and their families. For example, they do studies on health care service use, timeliness of services, costs, access to care, quality of life and health outcomes.
    • In a recent study conducted in one state, researchers found that families can encounter obstacles to getting medical care (e.g., high costs, need transportation, and have trouble getting referrals to treatment) for their children with clefts2.
    • In another recent study using data from three states, researchers found that children with clefts may be at a higher risk of separation anxiety disorder than children without these conditions3.

For additional information, see resources for parents.


More Information

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  1. Honein MA, Rasmussen SA, Reefhuis J, Romitti P, Lammer EJ, Sun L, et al. Maternal smoking, environmental tobacco smoke, and the risk of oral clefts. Epidemiology. 2007;18:226–233.
  2. Cassell CH, Mendez DD, Strauss RP. Maternal perspectives: qualitative responses about perceived barriers to care among children with orofacial clefts in North Carolina. Cleft Palate Craniofac J. 2012;49:262-269.
  3. Tyler MC, Wehby GL, Robbins JM, Damiano PC. Separation anxiety in children ages 4 through 9 with oral clefts. Cleft Palate Craniofac J. 2013 Mar 1. [Epub ahead of print] DOI:10.1597/11-239.
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