If you know me, you know I’m someone who works best with a plan. Even when it comes to hectic things in life, like the birth of a baby, we stick to the plan.
Flash back to Feb. 26, 2021, my husband and I have a birthing plan that, once again, we are sticking to. At 2:39 a.m., our little boy arrives, and plans change for the rest of our lives.
After our 48-hour stay and two failed hearing screens at the hospital, we were discharged with a follow-up appointment a few days later. I was concerned but not worried.
Failed newborn hearing screens can happen for a couple of different reasons, so going into the follow-up, I was optimistic. That optimism quickly vanished with another failed screen and a newly scheduled appointment at Phoenix Children’s.
At 19 days old, our son Cameron was diagnosed with moderate-to-severe bilateral permanent hearing loss. Maddie McNamee, AuD, delivered the news with care, but I could tell she knew I was devastated.
Due to COVID-19 restrictions, my husband was sitting in the parking garage also taking in the information. Our heads and hearts were filled with fear and sadness.
Starting the journey toward sound
The next few days were tough. We had so many questions, so we started gathering resources as quickly as possible. We spent many hours at Phoenix Children’s attending appointments, managing paperwork and meeting with specialists who would set us on our journey to Cameron having access to sound.
We knew Cameron needed support but, as his parents, so did we. This was new territory for us, and we wanted to make sure we could advocate for him and for ourselves!
Through therapy and doctors, we began to build a tribe of people who were ready to help Cameron and our family get what we needed. We especially value the relationship we’ve built with the amazing people at Arizona State Schools for the Deaf and Blind (ASDB) and Hands and Voices. Morgan Scadden and Jennifer Knox have been the perfect light to guide Cameron through this journey.
It was a no brainer to move forward with getting Cameron hearing aids to help him on his journey. The morning of May 28, 2021, we drove to Phoenix Children’s to receive Cameron’s first set of hearing aids. Once Maddie, our audiologist, got the hearing aids in his ears and switched them on, Cameron instantly responded. As we began to talk to him, his smile grew bigger. He was fascinated by his dad’s voice the most.
Education and adaptation
Before leaving that day, Maddie walked us through everything we needed to know. This education ensured we could support Cameron while he began to get used to the aids and taught us how to best take care of his devices. She walked us through routine things like nightly aid cleanings and battery changes, to more fun things like mold design and hearing milestones: our new normal.
However, with change comes adaptation. Within 24 hours, we realized Cameron needed some form of retention gear because his earmolds were already small due to how fast he was growing. We tried many options, and Cameron easily became comfortable with the pilot’s cap, which helped him always keep the aids in his ears. He was averaging almost eight hours of wear time a day, which is well above average for a child his age.
As we approach two years with hearing aids, we can proudly say that Cameron continues to stay above the average wear time for his age. Something that we thought would be so detrimental in our lives has become one of the most rewarding journeys. However, as a family, we wouldn’t be able to say or feel that way without Cameron’s team at Phoenix Children’s!
