Shae's Story

When Shae was born in November 2006, Steve and I knew that she might have some medical issues. I had been diagnosed with a two-vessel umbilical cord (2VC) during my pregnancy. We knew that 2VC can cause medical issues such as cleft lip/palate and anomalies of the the heart, kidneys, or spine. But we had never heard of microtia. So when Shae was born with one ear curled over and two skin tags on her right cheek, we didn't even have a name for it. In fact, I didn't find the term "microtia" until a month later, doing research on my own. Microtia means, literally, "little ear." There are varying degrees of microtia, Grade I being a slight malformation of the ear and Grade IV being complete absence of the ear (anotia.) No one knows what causes microtia. It can be accompanied by other medical conditions as part of a syndrome or it can occur as an isolated incident. Shae has been diagnosed with Goldenhar Syndrome and has kidney reflux in addition to microtia of the right ear. Microtia is often accompanied by atresia, or absence of an ear canal. Shae has a canal in her right ear, but it is extremely narrow (canal stenosis.) Most kids with microtia/atresia have some degree of hearing loss. At two-and-a-half, Shae is doing great! She's bright, beautiful, and very independent. We are beginning the process of consulting with various reconstructive surgeons so that we can decide to pursue surgery (rib graft, Medpor, or soft tissue), a prosthesis, or nothing at all. I hope you enjoy reading about our journey!