Jennifer Fieten, MA, CCLS
Shirley Ryan Ability Lab, Chicago, IL
Concordia University, Ann Arbor, MI
Willow House, Chicago, IL

July is National Cleft and Craniofacial Awareness and Prevention Month, a time to raise awareness and improve understanding of orofacial clefts (clefts of the lip and palate) and other conditions of the head and face (Centers for Disease Control and Prevention, 2015). About 1 in every 1,600 babies is born with cleft lip with cleft palate in the United States (Centers for Disease Control and Prevention, 2023). What are the potential effects of orofacial clefts and other craniofacial conditions on the child? Children with orofacial clefts and other craniofacial conditions often have impaired ability to feed and impaired language development, and might be at increased risk for a greater number of ear infections, hearing issues, and problems with their teeth (Centers for Disease Control and Prevention, 2015).

What is a cleft lip and/or palate? Cleft lip and cleft palate are birth defects that occur when a baby’s lip or mouth do not form properly during pregnancy (Centers for Disease Control and Prevention, 2023). Moreover, what are the causes? Cleft lip and cleft palate are thought to be caused by a combination of genes and other factors, such as things the mother meets in her environment, or what the mother eats or drinks, or certain medications she uses during pregnancy (Centers for Disease Control and Prevention, 2023).

Recently, the Centers for Disease Control (2023) reported on important findings from research studies about some factors that increase the chance of having a baby with an orofacial cleft:

• Smoking―Women who smoke during pregnancy are more likely to have a baby with an orofacial cleft than women who do not smoke.
• Diabetes―Women with diabetes diagnosed before pregnancy have an increased risk of having a child with a cleft lip with or without cleft palate, compared to women who did not have diabetes.
• Use of certain medicines―Women who used certain medicines to treat epilepsy, such as topiramate or valproic acid, during the first trimester (the first 3 months) of pregnancy have an increased risk of having a baby with cleft lip with or without cleft palate, compared to women who didn’t take these medicines.

As child life professionals, we have the ability to provide support to children, adolescents, and families affected by orofacial clefts and other conditions of the head and face, as well as to bring awareness to the needs of these patients and families. Websites like Centers for Disease Control and Prevention (https://www.cdc.gov/ncbddd/birthdefects/cleftlip.html), the March of Dimes (https://www.marchofdimes.org/find-support/topics/birth/cleft-lip-and-cleft-palate), National Craniofacial Association (https://www.faces-cranio.org/), Children’s Craniofacial Association (https://ccakids.org/), and American Cleft Palate Craniofacial Association (https://acpacares.org/) provide information and resources that can be shared with patients and families.

There are also opportunities for our professional community to celebrate this month and to further advocate for our patients and families. Child life specialists can be a voice for children’s with orofacial clefts by advocating for:

-Quality prenatal care
-Health insurance
-Healthy food and clean water
-Racially and ethnically diverse health care providers
-And, for culturally appropriate health information to be available in various languages

 (March of Dimes, 2023)

References:

Centers for Disease Control and Prevention. (2023). Facts about cleft lip and cleft palate. Retrieved from https://www.cdc.gov/ncbddd/birthdefects/cleftlip.html

Centers for Disease Control and Prevention. (2015). Announcement: National cleft and craniofacial awareness and prevention month. Retrieved from https://www.cdc.gov/mmwr/preview/mmwrhtml/mm6425a5.htm

March of Dimes. (2023). Cleft lip and cleft palate. Retrieved from https://www.marchofdimes.org/find-support/topics/birth/cleft-lip-and-cleft-palate

Resources:

American Cleft Palate Craniofacial Association, (2023, July). https://acpacares.org/

Centers for Disease Control and Prevention, (2023, July). https://www.cdc.gov/ncbddd/birthdefects/cleftlip.html

Children’s Craniofacial Association, (2023, July). https://ccakids.org/

National Craniofacial Association, (2023, July). https://www.faces-cranio.org/