The Smiley-McAllister
Journey: A Deep Dive
into Resources and
Education

By all accounts, my pregnancy with Finnley was run of the mill with no issues, until at 34 weeks I was admitted to the hospital with critical Preeclampsia which soon led to an emergency c-section.  My only thoughts at the time were about Finnley’s survival, so when the nurse told me he had “a folded over ear,” I really thought nothing of it.  When I was able to see him and really look at his ear though, it was immediately obvious that it was not “a folded ear,” but that he had a tiny little ear and no ear canal.

 

I immediately jumped into research mode and discovered that Finnley was born with conditions called “Microtia” and “Atresia.”  I learned that Microtia and Atresia are about half as rare as Down Syndrome, but that not many people are familiar with them.  I was eager to learn as much as I could about Microtia/Atresia, and dove into the online support groups, advocacy sites and medical literature. Looking back, I can recognize that my deep dive into research was a soft landing for the grief I was experiencing, mostly about the difficulties my sweet little baby could endure in his life due to Unilateral Hearing Loss and a physiological difference from most other people. 

 

Finnley ended up remaining in the NICU for 52 days after his birth, and upon discharge was referred to the Colorado Home Inclusion Program through Early Intervention as well as to a CO-Hear(as they were called at the time, now known as CHIP Facilitators).  We met with Colorado Children’s Audiology for an ABR Hearing test which confirmed severe, rising to moderate, Unilateral Hearing Loss.  We also met with an ENT, who provided Finnley’s formal diagnoses of Microtia and Atresia.  In writing this, it may sound like all of this was very straight-forward and status-quo, but in the midst of all of these appointments and tests I felt entirely overwhelmed and uncertain about Finnley’s future and what our family life was going to look like moving forward. He was fit with a Bone Conduction Hearing Aid at 5 months old, and our family began learning ASL around that time as well. 

 

After the initial appointments passed and we settled into home life with a new baby, I continued to research and explore resources in our area.  I learned that the Colorado School for The Deaf and The Blind has an incredible outreach department that hosts online and in-person meet-ups for Deaf and Hard of Hearing Kids across the State of Colorado. We began attending as many of those events as possible.  I also learned about Colorado Families for Hands & Voices and got connected with a Parent Guide By Your Side.  I was connected with a mom whose child with Microtia and Atresia was older and about to graduate high school.  Hearing their family’s story was so encouraging, especially hearing that he was thriving and planning to attend college after graduation.

 

When Finnley was an infant, my mind would often jump to worst case scenarios and allow the fear of the unknown to overshadow the bright spots and joy of motherhood.  Since then, however, meeting other families raising Deaf or Hard of Hearing kids and meeting Deaf adults has been incredibly beneficial to squelching the anxiety and instead provided space to dream of the possibilities that lay ahead for my baby and our family.  We are just shy of 3 years into our journey as a family and while there is still immense uncertainty, with the support of CHIP, CSRP, CSDB and CO Hands & Voices I feel empowered and able to navigate and overcome whatever lies ahead.