During our grieving process, we found a way to say goodbye to who we thought he would be, and we created a space in our hearts to welcome the beautiful soul he was.
Embracing a New Future for Our Son
Monday, December 14, 2020
I will never forget the wave of coldness that washed through my body in the seconds following my son’s initial auditory brainstem response (ABR) test. The audiologist pulled up a chair across from me as I cradled my newborn, and I knew from the serious look she wore that our world was about to change. Thursday, October 17 of 2019 – Sawyer Cox, my seven-week-old baby, was diagnosed with Bilateral Profound Sensorineural Hearing Loss.
Acknowledging a new version of future
For the next few days, my husband and I commiserated over our feelings of devastation. We questioned the diagnosis, desperate to disprove it. We rationalized it: “Well, at least it’s not…” As his mother, I cast the blame upon myself. Why had my body failed him? We mourned the hours we had spent throughout the pregnancy and since his birth speaking to him, singing to him. We were heartbroken to learn that he had heard nothing all that time. We cried what felt like endless streams of tears. Our hopes and dreams for his future shattered.
Looking back, I can see how important it was for us to grieve as we did. During our grieving process, we found a way to say goodbye to who we thought he would be, and we created a space in our hearts to welcome the beautiful soul he was. It was an incredibly vital process.
Getting to work
Our tears eventually turned into questions. “What does he need?” “How do we access that, and give it to him?” “What do we want for him?” “What is available to him?” These were among the first questions we asked each other. Sawyer, to our knowledge, is the first member in both our families to be born with a hearing impairment. The road ahead of us had not yet been forged by anyone we knew—there was no one whose experience we could learn from.
So, the following Monday, we began with the small booklet on hearing loss provided to us by the audiologist. It explained what Sawyer’s type of hearing loss meant, and how early intervention was crucial. Possible options were listed, as well as the necessary course of action if we chose to pursue cochlear implants.
Before Sawyer’s second ABR, we had determined that we would pursue implants. It was important to us that our son receive every opportunity to develop spoken language. We confirmed our choice for a bilateral surgery (for two implants) with our son’s otolaryngologist upon our initial meeting with him. It would be another nine months before Sawyer would be able to undergo the surgery.
I watched in awe as my son’s face lit up with joy as he really listened to his daddy’s voice for the first time.
While our health insurance did cover the cost for implants, they did NOT cover the cost of hearing aids. Fortunately for our son, the Georgia Hearing Aid Loaner Bank connected us to the Auditory-Verbal Center in Atlanta. They provided us his Phonak Sky hearing aids at no cost to us until surgery could be completed. On the day before Thanksgiving, Sawyer received his first set of ear molds and was fitted with hearing aids.
I will never forget that day. Initially he was upset. Upon our return home, my husband sat down to feed our son. Naturally, he started to sing, and I watched in awe as my son’s face lit up with joy as he really listened to his daddy’s voice for the first time. Sawyer did not care about the bottle; he was too enamored with the sound of Daddy. They stayed that way for a long time. Cuddled in the glider, rocking, singing, smiling, cooing. Up to that day, he had never smiled or giggled.
Since then, Sawyer has become a sponge for sound. He has surpassed everyone’s expectations of a deaf baby, and he has reached milestones that we never expected him to achieve in his first year of life. He was quite the conversationalist! If anyone was talking, he was as well. He loved musical toys, nursery rhymes, story time, Facetime chats with the family, and he loved the sound of his own voice. He discovered his voice quickly, and over time learned how to create certain sounds and vowels. His evident love of hearing just further encouraged our choice to pursue implants.
Choosing cochlear implants
In order to become approved for implants, Sawyer had to complete a long checklist that would prove he was healthy enough for the surgery, and that he did not receive enough benefit from the hearing aids. He completed an echocardiogram, was thoroughly examined by a pediatric ophthalmologist, underwent extensive genetic testing and has participated in weekly auditory-verbal therapy since he was four months old. Most importantly, he underwent a CT Scan and MRI, which were vital in determining his candidacy for the surgery.
I took real notice of Advanced Bionics for the first time the morning Sawyer was fitted for his hearing aids. As we waited in the lobby, I walked over to the display of the various implants, hearing aids, information and accessories, when I spotted the Advanced Bionics pamphlet. While reading through it, and looking at the newest implant, another mother walked up to me and started sharing how much she loves AB. She sang especially high praises for their customer service. A personal recommendation from another mother was very impactful.
I took all the brochures home for the various companies that produce CIs. I called AB first, then MED-EL, and then Cochlear. To be honest, all the products on the market are amazing. What technology can do for the deaf and hard of hearing still baffles my mind many months later. But AB offered something extra special that resonated deeply with me.
Music was a major part of my life growing up. I was a professional classical violinist and the worry that my son would never be able to share music with me was devastating. Of course, that thought occurred long before I knew about the technology. Once I learned about AB's current steering technology, I became obsessed. While I’m no expert on CI equipment, I understood that if Sawyer were to become implanted with their 16-electrode array, the steering would grant him the widest range of pitch possible. No other implant, even with a 22-electrode array, could match their current steering design.
This was a hard concept for me to grasp. I grew up learning to prepare and plan for everything. Before college, at the beginning of each semester, I would plan where I was going to sit, if the teacher would wear a Roger or if I’d control Roger from my desk. I found out ahead of time what class structure was like, whether the instruction would rely on videos or notes, and what other accommodations could be used in that class.
It was a bonus to learn that Phonak and Advanced Bionics are partners. As I have said, our son started off using Phonak Sky hearing aids provided to us by the Georgia Hearing Aid Loaner Bank, which we loved. We were thrilled to stay with the family that ensured our son had hearing aids when our insurance failed to provide any coverage options upon his diagnosis.
Opening a new chapter
Sawyer successfully completed his bilateral surgery on September 4th of 2020, and he was activated 11 days later. While the surgery went without any hitches, there was a complication with the breathing tube that resulted in a long night of breathing treatments and steroids. No surgery comes without risks. By the next morning, he was back to his normal self (albeit very tired). He was ready to play, and behaved as though he had not just endured a major surgery!
We have only just begun our journey. The road ahead will be long, but the achievements are so much sweeter than we ever imagined. In the first two weeks following his surgery, he has already begun responding to sound. He is quickly catching up to the progress he made with hearing aids. What took him months to learn, he has re-learned in just a matter of days.
Looking ahead to the next few years of his life, we are endeavoring to create a foundation that will set him up for a lifetime of success. The technology that he wears for hearing is not successful on its own. It is important that he stays active with auditory-verbal therapy and speech therapy for him to achieve maximum success in his spoken language skills. He will be monitored closely by his audiologist so that adjustments to his sound processors can be made as he continues to grow and develop. When we made the choice to pursue this route, we understood that it would require a huge commitment on our part, and we intend to see it through as thoroughly as possible.
Success with hearing and spoken language is not our only priority. Our hope, above all, is to raise our son to be proud of himself. We could do everything perfectly by the book, but if we don’t raise him to be confident in himself and comfortable with his differences, that would ultimately impact his success in every other aspect of his life. As his parents, we will need to set the example of acceptance by normalizing his hearing loss.
Three of the four hours during weekly therapy will be spent with other children who are deaf and hard of hearing as he works on his speech skills. The final hour is spent in one-on-one with his therapist. Whenever we are out and about, if people have questions (including other children), we always welcome them to inquire about his ears and his condition. Open dialogue is welcome as we relish the opportunity to spread awareness. While he might be a toddler now, as he grows up, I hope that he will begin to learn his own story and someday be the one to share it, proudly. We advocate, we mentor with Advanced Bionics, and we openly share his story.
Our circle of support includes hearing and non-hearing people. We have connected to hearing aid users, implant recipients, and individuals who use nothing except sign language. Our family, our friends, our employers are in our circle of support. The world in which he was born is multi-faceted and we hope that he learns to embrace all of it with pride.
Raising a child with hearing loss is not an end all. It is a journey. Thankfully, we are not alone. And we are prepared and excited for the future.
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