National Cleft and Craniofacial Awareness and Prevention Month

Articles

Jul 2

July is National Cleft and Craniofacial Awareness and Prevention Month. During this time, we aim to raise awareness and help more people understand these conditions. The term craniofacial is used when referencing conditions that affect a person’s head and/or face. A few of the most common congenital abnormalities are cleft lip and palate, craniosynotosis, and microtia/anotia. Trauma by accidents, burns, or animal attacks as well as, oral, head, neck, and skin diseases can also cause a person to have a craniofacial irregularity.

What is Cleft Lip or Cleft Palate?

According to the Mayo Clinic, cleft lip and palate is the most common birth defect in the US that affects 1 in 700 births.

“Cleft lip and palate are openings or splits in the upper lip, the roof of the mouth (palate) or both. Cleft lip and cleft palate result when facial structures that are developing in an unborn baby don't close completely.”

(https://www.mayoclinic.org/diseases-conditions/cleft-palate/symptoms-causes/syc-20370985)

Generally, corrective surgery is performed and the person experiences little to no difficulties. However, some that still experience complications can have difficulties with feeding, speech, and ear infections/hearing difficulties.

What is Craniosynostosis?

Craniosynostosis occurs at birth and is related to the development of the skull. The joints between bones in the skull are called cranial sutures, and during development they can prematurely fuse together before the brain has a chance to fully develop. As the brain continues to grow after this point, it can lead to the baby’s head appearing misshapen.

If left untouched, deformities and social isolation can occur as well as developmental delays, blindness, seizures, cognitive impairments, and lethargy can occur due to intracranial pressure.

What is Anotia?

Anotia is a birth defect in which a baby’s external ear is missing entirely. A small or malformed external ear is microtia. Generally, these defects only affect how the ear looks and the inner ear is not affected. It is most common to only have 1 affected ear. It is hard to determine how many people are affect by microtia or anotia due to the range of severity. Type 1 is the mildest form of microtia only affecting the size and type 4 would be anotia where the ear is missing completely.

Treatments for these defects according the the Mayoclinic include but are not limited to:

Feeding strategies, such as using a special bottle nipple or feeder
Speech therapy to correct difficulty with speaking
Orthodontic adjustments to the teeth and bite, such as having braces
Monitoring by a pediatric dentist for tooth development and oral health from an early age
Monitoring and treatment for ear infections, which may include ear tubes
Hearing aids or other assistive devices for a child with hearing loss
Therapy with a psychologist to help the child cope with the stress of repeated medical procedures or other concerns
Surgery to correct head shape or reshape the ear
Helmet therapy

Resources for Facial Differences

Children’s Craniofacial Association

Headquartered in Dallas, TX, CCA aims to address the varying concerns that relate to craniofacial conditions. These conditions require many different needs to be met with medical necessities, financial assistance, emotional support, as well as awareness and more education to help others understand how it affect those with a condition of this nature. CCA’s mission is “to empower and give hope to individuals and families affected by facial differences.”

Learn more at: https://ccakids.org

AmeriFace

In Las Vegas, there is a non-profit organization called AmeriFace that was formed in 1991. AmeriFace is the largest most active support organization for people with craniofacial deformities. AmeriFace’s goal is “to see a time very soon when persons with facial differences are accepted for who they are and not judged by their appearance.” To learn more about AmeriFace or to explore all of the ways they may be able to help please visit: http://www.ameriface.org.

myFace

This non-profit organization was previously called the National Foundation for Facial Reconstruction (NFFR). The visibility of facial differences can have a greater impact on a person’s well-being and their ability to grow and survive without become increasingly isolated or bullied. The myFace center aims to provide treatment for those who request it, “regardless of the type or severity of the anomaly, the length of treatment, or the family’s ability to afford care.” Learn more at https://myFace.org

Facing Forward

The Facing Forward organization aims to provide adults and young adults learn about living a fulfilling life with visible differences through workshops and group sessions along with educational resources. Helping individuals develop strong social and interactive skills through their presentations can inspire and strengthen those with facial or visible differences. Learn more about Facing Forward at http://www.facingforwardinc.org.

Looking for additional resources about health and wellness? Check out some of our recent resources to help you learn more about promoting good health for you and your loved ones:

Additional Resources:

https://www.mayoclinic.org/diseases-conditions/craniosynostosis/symptoms-causes/syc-20354513

https://www.mayoclinic.org/diseases-conditions/cleft-palate/symptoms-causes/syc-20370985

https://www.cdc.gov/ncbddd/birthdefects/anotia-microtia.html

https://www.cdc.gov/mmwr/preview/mmwrhtml/mm6425a5.htm?s_cid=mm6425a5_w