Living with Treacher Collins: A Brother's Perspective
Would you be scared if you were born with a birth defect? Would you be sad if people stared at you when you went places? What if it was your face that made you look different from everyone else? Well this is what it’s like for my little brother Ian. My brother Ian was born with Treacher Collins Syndrome eight years ago. Treacher Collins is a facial birth defect. Treacher Collins is so rare that it is found in only 1 out of 50,000 babies. In Maryland where we were born, the doctor said there were only three other children with Treacher Collins in the entire state. The hospital pediatrician actually had to “Google” Ian’s symptoms after he was delivered. That’s like being the only kid in the city of Jacksonville with blonde hair and your doctor has only read about children with blonde hair! Pretty unimaginable, don’t you think?
The physical features of Treacher Collins include downward slanting eyes, a small lower jaw, lack of eyelids, high palate, malformed ears and conductive hearing loss. The eyes are often referred to as “sad-eyes.” The small jaw meant that he could not breathe well enough on his own nor could he eat on his own. And since Ian’s ears are really only little lobes, he is considered profoundly hearing impaired or deaf without a hearing device. If all of this medical stuff sounds complicated, you are right, it is! Ian has had 17 surgeries at three nationally recognized hospitals but most of them in Cincinnati, Ohio, where my parents found an amazing surgeon. This smart and talented doctor has helped regrow and form my brother’s jaw two times already in his short life. With these surgeries, Ian is in extreme pain, needs a feeding tube to eat, and has lots of swelling, which takes a few weeks to go down. Remember, Ian is only 8 and has about ten to twelve more years of these necessary surgeries. Being Ian’s big brother is, well I’m not sure. For me, all I see is my little brother Ian with long surfer hair who tries to karate chop and kick me all the time. So at home, being his brother is easy. Yet, when we are in public I see other people, mainly kids staring and pointing at Ian’s face. Sometimes they even say rude and mean things to him. When I read the book Wonder, I knew just how Auggie’s big sister, Vi , felt. Yet, I realized how sad and frustrating it was for Auggie too. When you have a family member with a birth defect it can be hard, but most days it’s okay. I know God has given Ian so much courage and a great personality to be able to live with Treacher Collins. But Ian isn’t the only one living with Treacher Collins, my mom is, my dad is, my grandparents are and so am I.
