Cooper’s Story

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 is terrifying when you learn they will. It takes time to process, to let it sink in. And once it does, you find yourself faced with staying stagnant or taking action. And I promise, action is the better option.

As Cooper’s parents, we are committed to educating ourselves and advocating for him as much as possible. Cooper has bilateral cochlear implants and uses a combination of spoke language and sign language to communicate. While not what we anticipated, this journey has truly been a beautiful one full of silver linings.

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.

"Parenthood is about raising and celebrating the child you have, not the child you thought you'd have. It's about understanding your child is exactly the person they are supposed to be. And, if you're lucky, they might be the teacher who turns you into the person you're supposed to be."

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