Additional Needs

Cleft and Craniofacial Awareness: Celebrating our differences

Posted by Jennifer Arnold on 25th July 2019 Additional Needs, Advice & Support, Disabilities

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July is National Cleft and Craniofacial Awareness month here in the United States.

The term “craniofacial” refers to the parts of the head and face; a “craniofacial condition” refers to any disease, defect, or trauma resulting in the malformation of the head and face.

Cleft refers to an opening or split in the upper lip which happens when developing facial structures in an unborn baby don't close completely.

A baby with a cleft lip may also experience a cleft in the roof of the mouth, also known as a cleft palate. Some children are born with one or the other, and some are born with both.

Cleft lips and cleft palates can usually be corrected surgically at a young age.

Craniofacial differences came into the spotlight in 2017, when the book “Wonder” by R.J Palacio was made into a hit movie.

It resulted in the “#choosekind” movement and a surge in awareness of craniofacial conditions, facial differences, and the people they affect.

Auggie Pullman, the fictional character in “Wonder,” is a representation of one of the approximately 600,000 people in the United States that are affected by a craniofacial condition or facial difference.

Two of my children and I are three of those 600,000.

We were born with a rare genetic condition called Oto Palatal Digital Syndrome with Pierre Robin Sequence.

This involves, among other issues, an extremely small lower jaw which compromises the person’s ability to breathe correctly. Pierre Robin Sequence is one of the 19 conditions classified as craniofacial by the Children’s Craniofacial Association of America.

Although these conditions vary widely in severity, the people that they affect all have some sort of noticeable facial difference.

When I learned that Wonder was being made into a film, I was a little bit leery. I was afraid that it wouldn’t do justice to the challenges that people with facial differences live with every day, and the struggles that many of us go through. I was also afraid that it would put people with facial differences up on some kind of inspiration pedestal rather than validate and celebrate our differences.

Usually, people affected by craniofacial conditions do not want to be the source of someone’s inspiration just because they happen to have a facial difference.

My hope with the release of the movie and “#choosekind” movement was that people would not only choose to be kind; they would choose to be educated.

So far, I have not been disappointed. There will always be the awkward stares and questions, but I would rather have blunt questions than for someone to make assumptions about myself or my kids.

Another awesome thing about the rise in awareness of craniofacial conditions is that it has allowed me to find a wonderful online community of people with the same diagnoses of OPD.

A couple of years ago, I had almost given up on finding anyone else with the same condition, but now I have found a group that understands myself and my kids in a way that no one else can.

Everyone with a cleft or craniofacial condition deserves to be celebrated.

Each one has a unique story, and many of us would be glad to share- all you have to do is ask!