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Have you just been told that your baby has sensorineural hearing loss? Asaph Reid was just six months old when he received his bilateral cochlear implants, and he hasn’t looked back since!

We asked Asaph’s mum, Charlotte, to tell us all about her son’s hearing journey, and explain what life is like for a cochlear implant family.

 


 

We are the Reids and we live in Downingtown, PA. It is a beautiful suburb about 45 minutes from Philadelphia. Jordan and I met in an elevator, and we just celebrated our sixth anniversary. We have three kids, Asaph (now 5), Zion (2), and Sabbath (5 months). The kids love our two pets: a rescue dog named Juniper and a cat named Ivy. 

 

Discovering Hearing Loss

Asaph failed the newborn hearing screening at the hospital on his second day of life. We brought him back two weeks later for a retest, and he failed it again. At that time, we did not know the type of hearing loss or the severity, so we saw an ENT doctor who referred us to Nemours/Alfred I. duPont Children’s Hospital in Delaware. At eight weeks old, Asaph took an Auditory Brainstem Response (ABR) hearing test which identified that he had bilateral sensorineural hearing loss, categorized as severe to profound. 

The ABR test was hard for many reasons, the least being that I had to starve and sleep deprive Asaph for 12 hours leading up to the test so that he would sleep soundly while it was being performed. But the greatest reason was that the results were just not what I was hoping for. I wrestled through feelings of shock, pity, and being overwhelmed by the new information, doctors’ appointments, and insurance stuff (and just being a new mom in general!). Looking back, I can see how I was sustained by grace through it all.

 

Choosing A Cochlear Implant

Once we knew that Asaph had hearing loss, our biggest prayer was that he would be able to get cochlear implants to hear, speak, and communicate. I am aware that deciding whether or not to get cochlear implants is a big decision for some families, and I’m very sensitive to that. However, for our own family, we were just very grateful that CIs were an option for him.

Choosing which brand of cochlear implant was a big decision that we discussed in great detail. We had to consider which company provided both the best current technology, and innovation for the future. Because the internal component is surgically implanted in his head, we can’t just switch brands like toothpaste.

To help with making the decision, we met with a few local families who shared about their CI experience. We read through marketing collateral, weighed pros and cons, and even looked into financial statements.  When it came down to it, we agreed that MED-EL had the best sound processing strategy— which was the whole reason for Asaph getting the gift of hearing in the first place.

Asaph was named after the Biblical psalmist who was the chief worship director under King David, so we felt affirmed in our decision because MED-EL shares the music theme—with musical equipment names such as the OPUS 2, RONDO, and SONNET, and a tagline about “getting the whole piano”, which means complete cochlear coverage to hear every musical note!

 

Preparing For Surgery

They told us that Asaph was the second youngest child ever implanted at Nemours hospital! We prepared by having many, many people praying for a successful surgery and recovery. Meeting with his surgeons instilled confidence in us that the actual procedure was relatively low risk, that the biggest concern was his ability to handle the anesthesia.

 There were a lot of appointments leading up the actual surgery. It seemed like we spent time in every department at the hospital—genetics, neurology, urology, cardiology, audiology, etc. By the time he was ready for surgery day it just all felt surreal, something we had been looking forward to since he was first diagnosed. 

 

Activation Day

Activation day was amazing! We had been told to set our expectations low, realizing that not every child has one of those “YouTube moment reactions”—but Asaph did great! When they turned his CIs on for the first time at just seven months old, we were thrilled that he demonstrated sound awareness by blinking in response to a clapping noise. And then he amazed us when he localized sound by turning his head in the direction of the sound claps! It blew us away and was a moment that we (and all the extended family packed into that tiny audiology room) will never forget! 

Along with activation day, one of Asaph’s wow moments when he said “momma” for the first time! Another of his first words was “flower” which was also cool to hear him say. And a big part of his hearing journey includes all of the wonderful people we’ve been able to work with—his audiologists, surgeons, speech therapists, teachers of the deaf, and the team at MED-EL. Everyone has provided such amazing support and encouragement.

 

Growing Up With Cochlear Implants

Each stage of Asaph’s journey seemed to have its unique challenges—from pulling his CIs off as a baby, to not being able to communicate during bath time as a toddler, to answering his questions about why he was born deaf. But none of the challenges have come even close to outweighing the enormous benefit of being able to hear. 

I have constant marvel and appreciation for the technology that enables my deaf son to hear. I’m most surprised by how well he integrates wearing CIs into everyday life. It’s become second nature to the point where he wakes up in the morning and puts them on by himself, changes his own batteries, and lets me know if there’s an issue. But otherwise we just go about our days per usual. 

The amount of support from family, neighbors, friends, teachers, and even strangers has been so great. We are fortunate that Downingtown has a thriving community of hearing-impaired people and we get together for picnics and playdates from time to time. Asaph loved the year he spent in preschool with hearing-impaired peers at the Chester County Intermediate Unit. He’s had the best teachers. Ms. Carol and Ms. Cindy have become such a meaningful part of his life that we consider them Aunts! 

 

A Hearing Future

Now that Asaph can speak fluently, one of my prayers is to use his words to speak the truth and build others up. I’m less concerned with what he does in the future and more attentive to who he is becoming. He’s learning things like being generous, forgiving, and kind, and I think that as he grows in those kinds of things that he will thrive in whatever he chooses to do.

If you’re thinking about getting cochlear implants for your child, I would say: Do it! And from our experience, the sooner the better.

 

In Asaph’s Words

“I like my cochlear implants. I love them so much! Because they help me to hear.”

“My favorite sounds are birds.”

“When I grow up, I want to roller skate and ice skate. That’s all.”

 

 Thanks Charlotte, and Asaph!

 

 

Want to hear more from CI moms? Check out this post from Carolien, whose son Jackson has Usher Syndrome and profound deafness.

Find out more about how cochlear implants work and how they could help you or your child.

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