“Can Your Baby Hear You?” asked the pamphlet tucked into my hospital discharge papers.  “Of course he can,” I thought as I tossed the pamphlet into my bag and left the room to join my husband and newborn son.  Like many first-time parents, I had worried about a number of things during my pregnancy- Will he make it to full term? Could he have Downs’s syndrome? Would he have 10 fingers and 10 toes? Profound hearing loss had never occurred to me.  Luckily, in 1999, New York State mandated universal newborn hearing screening backed by follow up and early intervention.  Prior to this legislation, congenital hearing loss was often not detected until 18 months or later, and children missed a crucial window for auditory development.

A few weeks later, I listened numbly to our pediatrician. “His hearing loss will not define him,” our pediatrician said confidently as we reviewed the results of our newborn son’s follow-up hearing test, the otoacoustic emission testing or OAE.

Feeling overtired, overwhelmed, and without a point of reference, I initially struggled to share his conviction.  I nodded at the referral slip in my hand. We would learn more with a test called the ABR or Auditory Brainstem Response.  The ABR measures the hearing nerve’s ability to detect sound.

http://www.chp.edu/our-services/audiology/patient-procedures/abr

That sounded straight forward, but little did I know that our son’s least favorite activity was sleep.  To complete an ABR, electrodes are placed on the baby’s head, and earphones are placed in the baby’s ears.  Sounds of varying loudness are played in the earphones, and the brain’s response to sound is gathered via the electrodes attached to a computer.  When he finally succumbed to sleep, the ABR confirmed profound hearing loss.

In that moment, my life changed completely.  I wished for a roadmap, a plan I could follow so that I would only have to focus on 1 step at a time. It was 2006, a time of internet infancy, and gathering information was a challenge.  In the end, we decided that the oral path was right for our family.  There was no one with hearing loss on either side of the family, and our family was spread out over continents.  On my husband’s side of the family, English was a second language, so it would be difficult to know what type of sign language to choose.  Finally, we had the good fortune to live in a city with national leaders in the fields of speech therapy, audiology, and otology and incredible resources directed toward early intervention.

Meeting older children with hearing loss and gathering tips from their parents gave me the hope and strength that I needed to make it through the marathon of appointments that followed our son’s diagnosis. They also provided a roadmap to guide me through the diagnosis, next steps, a list of resources available to children with hearing loss, advice about schools.  I learned that it was crucial to choose an early intervention coordinator who had experience with children with hearing loss.  I found a talented auditory verbal therapist who would teach my son that sound had meaning and teach me how to narrate his world.  I discovered a pediatric hearing aid audiologist who would tirelessly replace my son’s ever changing earmolds and guide me through his countless ear infections.  When it was clear that even the most powerful hearing aids would only give him limited access to sound, we looked to cochlear implants. A new decision tree unfolded as we debated which cochlear implant company to choose and battled the insurance company for surgical approval.

There were moments of panic like when our son seemed to lose ground after his cochlear implant surgery (he was probably acclimating to all the high frequency sound he had never heard) and moments of joy like waking up to his voice calling me in the morning. I often joked that I should rent an apartment above the center where my son received speech, audiology, and ENT services because we spent so much time there.   Time passed, and Early Intervention transitioned to the Committee for Preschool Special Education.  We opted for mainstream preschool with support.  On the first day of preschool, Brendan waved goodbye and seamlessly melted into the sea of preschoolers on the playground.  Our pediatrician’s words finally clicked.