When Cooper was born in September 2019, he failed his newborn hearing screening twice. We were told this wasn’t abnormal and to bring him back to retest. We did so at three weeks and he didn’t pass again. Around this time, I learned of Waardenburg Syndrome and started researching. Much of what I read aligned with my baby and I just knew that's what we were facing.
On October 18, 2019, we had an appointment with an audiologist for more advanced testing, which elicited no response. We learned that day that we are dealing with full sensorineural hearing loss in both ears, meaning Cooper cannot hear at all.
After a fairly normal pregnancy and delivery, this came as a shock to all of us. You never expect your child to face any huge hurdles immediately in life, and it hurts like hell when you learn they will.
But as Cooper’s parents, we are committed to educating ourselves and advocating for him as much as possible. We know this road won’t be an easy one, but we have a happy, healthy baby boy who has so much ahead of him, hearing or not. This site will document Cooper’s journey to communication, whatever that may look like for him.
why we share
We know it's scary to walk this road, especially at the beginning. As new parents, we found comfort in other's sharing their stories of hearing loss and children. It helped us to be able to see kids living a full, normal life despite their loss. Because we found comfort in the parents who were willing to share their stories, we wanted to do that for someone else who is on this same path. It's hard to come to terms with the fact that your child is not necessarily who you thought they would be. And that's OK to admit. You're not alone.