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Community Spotlight: Our journey after a failed newborn hearing screening

We love it when people share their hearing loss stories with us on social media. Our community often provides comfort, encouragement, inspiration and support for others in similar situations. Recently we connected with one of our Instagram friends who we think has a wonderful story to share.

I had the opportunity to chat with Meg, the mom of 6-month-old Leif, after she shared a photo of her son with us on Instagram. This is their story: 

Jill: How did you find out your son had hearing loss?

Meg: I remember the morning after Leif’s birth, when we received the news, “he didn’t pass his newborn hearing screening,” followed by, “but I am confident/hopeful that this just is because he has a little fluid in his ears still, as his birth was pretty quick! We will re-screen tomorrow before you prepare to leave the hospital to go home!”

Two days later he was re-screened before preparing to leave the hospital to go home. Again, he failed. Not as badly as his first test, but I still remember those words, “he still didn’t pass!” We then proceeded to make an appointment to have the screening re-done 10 days later. This time it was a more in-depth hearing screening, again again, he didn’t pass. The doctors advised us that his hearing loss could be due to multiple scenarios, and again reminded us that it could still be very well related to how quick his birth was.

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But, with my proactive personality, I promptly set up an appointment with the audiology department at the Children’s Hospital. Without going into a plethora of details, the time-consuming “ABR” revealed that Leif was in fact somewhat hearing deficient, with mild-to-moderate sensorineural hearing loss in both ears.

I cried, I held Leif close, and I cried some more – not because of pride, but because he is my baby, and I didn’t want my babes to struggle. I feared Leif would be hurt by the ignorance of humanity, the people who could be naive to hearing loss. I was in shock.

Another week passed, and we were back at Children’s, to have Leif “fit” for hearing aids.

Jill: What had been your experience with hearing loss before your son was born?

Meg: The “silver lining” to Leif’s diagnosis is that I am actually partially deaf. I have significant hearing loss in my left ear, due to an injury sustained in my early childhood. Likewise, I have (for many years – prior to college and in college) had an interest in American Sign Language (ASL). Growing up, we also had a nonverbal, deaf youth in our church. So, I was definitely no stranger to the hard-of-hearing and Deaf communities. 

Jill: What was your son’s first reaction to his hearing aids? 

Meg: Initially, Leif didn’t display any change in demeanor once he was fitted with his Phonak SkyQ hearing aids. His reaction was calm, in contrast to what you may see from watching “activation day” videos for those with cochlear implants, but we were told that this was totally normal for his age, and to not expect an overwhelming reaction. 

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Jill: How has your son adjusted to his hearing aids since receiving them?  

Meg: It’s interesting… there have been less than a handful of occurrences when I have forgotten to put his hearing aid on him in the morning, and it’s like clockwork how he gets fussy.  As soon as I put his “super ears” in, he is all smiles and no fuss!

He is also going through a phase where he has “discovered” his hearing aids. For about a month, he has been pulling his hearing aids out. Now, we have a “pilot cap” (bonnet) to prevent him from pulling out his “super ears!”

Ask Anna: How do I keep my baby’s hearing aids in?

Jill: How has your outlook on hearing loss changed since your son’s birth?

Meg: My outlook has changed in a sense that I am more sensitive than I already was toward my children and other children and parents.  Some kids have impairments that are skin deep or less obvious, and some parents are struggling more than they show. I’ve just been trying to be more aware and truly cheer on my babes when each of my boys hitting their milestones. (Leif hearing/acknowledging new sounds & our toddler/firstborn hitting other milestones!)

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Having his hearing aids fit, and all smiles for more noises being heard!

Hearing aids have also come a long way, which has affected my outlook on hearing loss. In my younger years, hearing aid molds were similar to an acrylic material… definitely not comfortable when playing sports! Likewise- in comparison to the plethora of color choices you now have, I was stuck with “grandpa beige” housing and a clear hook and ear mold. Just by appearance of the older models you understand the stigma associated with hearing aids!  I am well aware now of how many strides have been made for the early intervention of hard-of-hearing and Deaf children!

Jill: How do you talk about your son’s hearing loss with friends and family? What about strangers?

Meg: My analogy for people of all ages (kids and adults), is that just like glasses help someone see, hearing aids help someone hear! You wouldn’t look at a person wearing glasses and say, “Oh, sorry you have glasses!”, just like it wouldn’t be right to look at someone short in stature and say, “Oh, you’re short, I am so sorry!”

There will be times when you just don’t want to explain it – and rightfully so, you don’t have to! There will be a day when my baby will be a young boy that wants to talk about it himself, and when that day comes I have to be respectful of that as it is his health/diagnosis! 


Jill: Do you have any other advice for moms of children with hearing loss?

Meg: Trust me, I know the shock of the diagnosis, I do! But… thankfully, we have modern technology. You have to remind yourself, it is not your babe’s fault! Early Intervention exists to help your child thrive! You are not alone, there are many celebrities, athletes and other inspiring people who have hearing loss and are breaking boundaries and stigmas against people with hearing loss. For example, the recent winner of “Dancing with the Stars,” Nile DiMarco!

All this to say… be proactive, be your babe’s advocate, help build their confidence as they grow, and educate others in doing so! You are your babe’s supporter and protector, so that one day when they are in school they will have the confidence that speaks volumes against any potential bully! 

Jill: What do you hope other people take away from your family’s story?

Dealing with a failed newborn hearing screeningMeg: I hope that through us sharing our story others will see that a hearing loss diagnosis is not about us as parents, it is everything about our children. Our very purpose is to love him fiercely, help build up a sense of confidence in him, and support him through his life as we do with our firstborn son.

I attribute my outlook to my faith, as it has definitely sustained me through the emotions involved in the diagnosis and coping. While the diagnosis was unexpected, we praise God it is not terminal or life threatening. While it is relatively new and unfamiliar to us as parents, we’ve embraced this and are thankful for medical intervention. While it Leif’s progression or improvement is unknown, we rest in our faith. We love our sons and know that God has a plan and purpose. He brought us to this and will certainly bring us through this!

Jill: Thanks for sharing your story, Meg! 

 
 
 
 
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Author Details
Jill von Bueren is the editor-in-chief of HearingLikeMe.com. Originally from the U.S., she now resides in Zurich, Switzerland. She has a background in journalism and is currently working on her second novel.
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Jill von Bueren is the editor-in-chief of HearingLikeMe.com. Originally from the U.S., she now resides in Zurich, Switzerland. She has a background in journalism and is currently working on her second novel.
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