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What I wish I knew about congenital hearing loss

what I wish I knew about congenital hearing loss
This article was originally written by HLM community member Stephanie Daniel.
“Your son has permanent bilateral mild sloping to moderately severe sensorineural hearing loss.”

After an excruciating and stressful one and half hour auditory brain stem response test on March 21, 2018,  my husband and I learned our three-month-old son was born with congenital hearing loss.

Diagnosis

After our son didn’t pass his newborn hearing screening, like many parents with no family history or risk factors, we were assured it was most likely fluid. When he was diagnosed a few long weeks later, my heart shattered. All I heard from the diagnosing audiologist was our Blake had “permanent hearing loss.” There’s a lot I wish I had known then about congenital hearing loss.

I was completely unaware of the new world our family was entering. There was no comprehension of the words that were now being permanently associated with my newborn son. I desperately asked the audiologist, “Well, what does that mean? What does Blake hear?” to which I received an answer of, “It is challenging to quantify exactly what he is hearing.”

“But did you not just tell me you knew Blake had hearing loss? Therefore shouldn’t you know how much loss he has since you described it as mild to moderately severe? How do you not know what my son can hear?” As the diagnosing audiologist grappled to educate and explain to my husband and I what this meant, emotionally, the lack of support was overwhelming. Among my inherent confusion and lack of understanding of how hearing works, suddenly other appointments were being recommended to us. This included an eye exam and an EKG. Possibly also a genetics test to hopefully, but not likely, identify a cause. Although I was hearing the audiologist speak, I was no longer listening.

Lack of Support 

What we were not provided was emotional support or information regarding what to expect on a daily basis to meet our son’s hearing needs. Isolated and alone with my son’s diagnosis and not knowing what to expect, I turned to the community on HearingLikeMe.com to learn more. Like many parents who receive the unexpected diagnosis of congenital hearing loss, what I wish I would have known then was the corresponding immediate need for knowledge and action.

“Isolated and alone with my son’s diagnosis and have no idea what to expect, I turned to the community on HearingLikeMe.com to learn more.”

Beyond the additional testing to rule out medical complications, I did not have any idea how many appointments would be in our future. Audiology appointments, ear, nose, and throat (ENT) doctor appointments, and speech therapy appointments. Between continuous audiology, assessments to evaluate our son’s hearing thresholds, and ongoing ear mold fittings (every 5-6 weeks as little ones grow super-fast!), biannual ENT appointments, and weekly speech therapy, the appointments quickly add up.

Read more: How I found the answer to ‘What caused my son’s hearing loss?’

Adjusting to the New Normal

Although the number of appointments and information are overwhelming at first, it quickly becomes your norm. Changing hearing aid batteries and watching for the little flashing lights on your son’s Phonak’s Sky B-P hearing aids to make sure the aids are working become second nature. Soon enough, your little one will grow, blossom in communication and realize their amplification benefits them. They won’t be launching their hearing aids across the room a hundred times a day. All the hard work you put in the first few months and years will be worth it.

congenital hearing loss

There is no one size fits all roadmap for pediatric hearing loss. Each child’s journey is unique. Understanding and meeting your child’s hearing and communication needs is critical. It seems unbelievably daunting considering best methods and efforts to encourage your child’s communication in the first few weeks of learning your little one has hearing loss. But the first time your child turns to noise in awe or imitates a word, all the hard work is immediately worth it. The first time your child effectively communicates with you, your heart will soar. When my son first signed “more” because he wanted more pancakes and then attempted to say “Hi!” to a family friend, I literally cried.

The communication milestones that we take for granted are extremely precious for our little ones with hearing loss. I have now been advocating, tirelessly parenting, and encouraging our son’s development for more than a year and half. As a result, I can say with confidence that although the journey is unexpected, with access to the right information and knowledge, you and your little one will thrive. Ask questions to your providers. Research your rights and advocate to gain access to the services your child requires. Although the journey may be unexpected, it is a journey of growth, hope, and love.

What do you wish you would have known when your child was first diagnosed with hearing loss?

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The HearingLikeMe editorial team includes Jill von Bueren, Kirsten Brackett and Lisa Goldstein.
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The HearingLikeMe editorial team includes Jill von Bueren, Kirsten Brackett and Lisa Goldstein.