About Us and Our Son
My son has Goldenhar’s Syndrome. As a result, he was born with only one open nostril and malformed ear canals. Surgery corrected his nose, but any surgery to correct his ear canals must wait until he is at least seven years old. He was born in October 2005 and the University of Nebraska Medical Center. He spent the first 11 days of his life in the Neonatal ICU.
It turns out that his auditory nerve and cochlea are fine. At this point, all we know is that his hearing loss comes from sound not travelling well through his twisted ear canals. He has had a hearing aid since Feb 2006 and with it, his hearing approaches a normal threshold. With surgery, it is possible that he will be able to hear normally.
Our goal is for him to speak and learn sign. Our choice of sign may be unusual as it is not ASL, but word-for-word English with endings. ASL is its own language with a different way of speaking than English. Because he has a hope of normal hearing later in life, we are teaching him sign in this way.
We hope that our experiences can help you as well.