‘Wonder’ shows struggles of living with Treacher Collins Syndrome

The new movie “Wonder” showcases the physical and mental ups and downs of a young boy named Auggie who has Treacher Collins syndrome and other facial abnormalities.

As a plastic surgeon specializing in pediatric craniofacial issues, I was anxious to discover how “Wonder” treated the subject of facial abnormalities. One of the most insightful things about the movie was the intimate look it gave into the day-to-day struggles of living with a craniofacial condition.

Auggie not only lives with Treacher Collins syndrome, but he also was born with a cleft lip and palate. Let’s look at these craniofacial abnormalities.

Treacher Collins Syndrome

A rare craniofacial disorder, the hallmark of Treacher Collins is the incomplete development of bones in the face, especially the cheekbones, jaw joints and ear canals. Like Auggie, children with this genetic condition have faces that don’t develop normally, and they require very specialized treatment and numerous surgeries to help them with breathing, hearing and eating issues.

Researchers know that Treacher Collins is caused by changes in one of three genes involved in developing a baby’s face. Many children with Treacher Collins, like Auggie, also have a cleft lip and palate.

Cleft Lip and Cleft Palate

A cleft lip (with or without a cleft palate), is one of the most common birth defects today. The CDC estimates that cleft abnormalities affect one in 700 infants worldwide each year.

When a baby is born with a cleft lip, he or she has an opening in the lip. A cleft palate is an opening in the roof of the mouth. Clefts happen early in prenatal development, usually in the first three months.

It’s important to note that there isn’t one single factor that causes a cleft lip or palate. Sometimes genetics plays a role, while other times environmental factors are the cause. Often, no specific cause can be identified.

The repair of cleft lips and palates is much more than cosmetic as children may have trouble eating, sleeping, breathing and speaking. Treatment plans vary and involve many specialties.

A Normal Life is Possible

The most important thing to note about children born with either Treacher Collins syndrome or other craniofacial conditions is that they have normal intelligence. They also usually have normally functioning bodies that develop just like other children their age. It’s often easy to assume that people with facial differences are developmentally delayed, but this is very often not the case.

Living with Facial Abnormalities

Once patients leave the hospital, there is still much work to be done. In addition to multiple surgeries down the road, it is difficult living with facial abnormalities.

This movie shows us that the actual struggles of living with a craniofacial condition are real and ongoing. Not only are the physical issues challenging, but looking different plays a role in a child’s self-esteem.

Strong family, skilled physicians, and community support can pave the way to a smoother healing process and healthy social and emotional development during the school years. “Wonder” shouts the message that a person is much more than what he looks like.

As a plastic surgeon, I think it’s important that we educate people to be respectful of others and to remember that their outward appearance has no reflection on what’s inside.

If you have or know someone who has a child with a craniofacial abnormality, please know there is a strong medical community right here in Wichita to support you and your family.

This story was originally published November 27, 2017 at 9:38 AM with the headline "‘Wonder’ shows struggles of living with Treacher Collins Syndrome."