Craniofacial Anomalies: What they are and why medical ID is important

Posted on July 7, 2017 by kerri

Recently, I read the book Wonder, about a ten-year-old boy named August who goes to school for the first time after he has finally recovered from medical issues associated with a craniofacial anomaly that has been present since birth. As the film adaptation is coming out in the Fall, I believe, it’s a good time to start discussing what “cranofacial anomalies” are, and what types of medical issues they can cause. For much of this post, I will be using the fictional character from Wonder, August, in examples—each person’s story is unique.

What is a craniofacial anomaly?

An anomaly is defined as something that is irregular or different from “normal”. [1] Sometimes, anomaly might be a term used to describe what was formerly referred to as a “birth defect” or a congenital condition—that is, one that is present from birth.

Craniofacial refers to the bones of the head and face. [1] Craniofacial anomalies are differences in the appearance of the head or face. For example, in the book Wonder, the main character’s ears are not shaped as we might expect, his eyes are lower down on his face, his eyelids are described in that his eyes do not look all the way open, and his mouth does not move the way most people’s do. [2] He also had a cleft lip/palate (an opening which is easily surgically repaired but may result in scarring) and has had surgery which has left his face scarred. [1] While this character is of course not real, he is certainly based on a composite of children and adults with medical conditions that, wholly or in part, affect the structure of the face and head.

One very common craniofacial anomaly is cleft lip and cleft palate, which are commonly repaired by surgery and often do not cause significant lasting health issues. [2] There are dozens of other craniofacial anomalies, some common and some more rare. [2] Some may include different growth patterns in the face and skull, or be caused by injury or trauma, such as an accident or burn. [3]

How can craniofacial anomalies impact people?

Craniofacial anomalies can contribute to other medical issues, as well as impact a person psychologically and socially. Because the causes of craniofacial anomalies can be wide-ranging, treatment and assistive therapies can vary greatly from person to person.

Medical issues arising from craniofacial anomalies can range from non-existent to significant depending on the individual, their treatment, and their medical condition(s).

In the book Wonder, August—though mostly recovered from a childhood of surgeries and therapies—has a history of other issues secondary to craniofacial anomaly. Again, these issues vary from person-to-person. Hearing issues arise, speech issues were tackled during his childhood, feeding and eating problems due to the shape of his mouth and jaw exist [4]. As well, during childhood, the main character had a tracheostomy to help him breathe, and had a feeding tube. [4] Each person is different—some people may have many secondary health issues caused by cranofacial anomalies, some may have few or none.

Medical ID for craniofacial anomalies

As stated above, the considerable variability in the health of people with craniofacial anomalies means that it’s near impossible to predict what their needs may be. Medical ID jewelry can communicate speech or hearing issues, need for tube-feedings, heart conditions, breathing problems or need for ventilatory support, and so much more. When issues are present that impact speech and hearing under normal circumstances, it is even more important to identify medical and communication needs by wearing a medical ID bracelet or necklace! In most cases, a family member or other caregiver will be able to explain the person’s medical needs, so this person’s contact information should also be engraved on the medical ID bracelet or necklace of a person with craniofacial anomaly and associated medical issues.

To learn more about craniofacial anomalies and their medical and social impacts, the Children’s Craniofacial Association is a good place to start. Reading Wonder by RJ Palacio can help to understand social aspects of those living with craniofacial anomalies. As well, you can read our interview with Natalie about life with Moebius Syndrome here.

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