Real-Life ‘Wonder’ :: Growing Up with Treacher Collins Syndrome

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Based on the New York Times bestselling book, the movie Wonder is a moving and uplifting story that showcases the physical and mental ups and downs of a young boy named Auggie who lives with Treacher Collins Syndrome.

Several craniofacial abnormalities can impact the lives of children dealing with this syndrome, and Auggie was also born other facial abnormalities – a cleft lip and palate. So what exactly does it mean to grow up as a real-life “Wonder”?

What is Treacher Collins Syndrome?

Treacher Collins is a rare craniofacial disorder, the hallmark of which is the incomplete development of bones in the face, especially the cheek bones, 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.

While Treacher Collins Syndrome affects only the head and the face, children may have the following characteristics:

  • Down-slanting eyes
  • Notched lower eyelids
  • Underdevelopment or absence of the cheekbones and the side wall and floor of the eye socket
  • A lower jaw that is often small and slanting
  • Underdeveloped, malformed and/or prominent ears
  • A cleft lip and palate
  • A need for early speech and language programs
  • Normal development and intelligence

Wondering what causes this syndrome? Researchers know that Treacher Collins is caused by changes in one of three genes involved in developing a baby’s face. It is a genetic condition caused by the presence of one or more genes that either isn’t working at all or not as they should.

What is a Cleft Lip and Cleft Palate?

A cleft lip (with or without a cleft palate), is one of the most common birth defects today. The Centers for Disease Control and Prevention estimates that cleft abnormalities affect thousands of babies in the United States 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, there is no specific cause that 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

One of the most important take-aways of the movie Wonder is that children living with Treacher Collins can lead a normal life.

Children born with either Treacher Collins syndrome or other craniofacial conditions 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

While a normal life is possible, living with Treacher Collins syndrome isn’t easy. Once patients leave the hospital, there is still much work to be done. In addition to multiple surgeries down the road, it’s difficult growing up 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.

The family and physicians, along with community support, can pave the way to a smoother healing process, while providing healthy social and emotional development during the school years. Wonder shouts the message that a person is much more than what he or she looks like.

 Acceptance and Kindness are Vital

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.

The movie Wonder excels at bringing the struggles of others into the forefront. It makes the conversations we have with our own children that much more valuable, so we can actively teach them about acceptance and kindness. 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.


Nataliya Biskup, M.D. is a pediatric plastic surgeon at the Plastic Surgery Center in Wichita, Kansas. She also heads Wesley Children’s Hospital cleft and craniofacial services team. You can schedule a consultation with her by calling 316-688-7500 or visiting pscwichita.com to request your appointment.

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