What our children’s hearing loss diagnoses taught us about communication and community

By Stephanie Kravitz

When they told us our first child failed the newborn hearing test, the bedside manner at the hospital was not great. The healthcare professional was crying, vague, and emotional. No information was given to us, leaving us with a lot of unknowns.

The uncertainty made the journey ahead terrifying and rocky. We received inconsistent information about our child's hearing, making it hard to understand the severity of the hearing loss or what steps to take next. It was unclear if hearing loss was the only issue or if there were additional challenges.

We live in Cleveland, so we sought a second opinion from another health system in the area, but we were given a different diagnosis. The lack of clarity and answers was overwhelming.

So, we took a breath and for his first year we decided to monitor our son’s hearing and commit to regular hearing tests to track his ability and to see if it changed or stayed the same. This is because we had providers in one health system tell us he needed a cochlear implant because he was deaf in one ear, and doctors in the other one said he needed ear tubes because it was just mild hearing loss. 

We didn't understand anything and as is always true, you don't know what you don't know. We were overwhelmed, so we quickly started learning what everything meant on the audiograms and which tests were being done. 

We met with an ENT, a cardiologist, speech-language  pathologists, and audiologists to find the right team and understand what was happening. We had to find the right professionals and understand what was actually going on. 

Regular testing over that first year finally gave us a consistent diagnosis of mild to moderate sensorineural hearing loss in both ears. Around his first birthday, our son was fitted with hearing aids, and we’ve been on a great path since.

Three years later, when our second child also failed her newborn hearing test, we realized the cause must be genetic. But this time, we knew what to do.

Being Proactive

We take a proactive approach to ensure our kids have the resources to succeed in all aspects of life, whether it be in the classroom, social settings, relationships, and to live their life to the fullest. 

Both children wear their hearing aids consistently, undergo regular audiograms, and are learning self-advocacy skills. We monitor their speech and education closely to keep a strong support team in place.

It is not always easy. The kids have days where they are exhausted or tired of hearing aids, and we show grace for those moments. Those feelings are normal and will be a part of life.

Hearing loss has taught us to appreciate simple joys and become better communicators. Each child experiences hearing loss differently because every kid is unique. 

Our son is more outgoing and is learning to speak up if he needs someone to repeat something or make sure he is in front of the person speaking so he can hear clearly. Our daughter is more shy and will sometimes withdraw socially or speak softly because she is uncertain of the word sounds or a classmate’s name. 

Both of our kids have high frequency moderate hearing loss but our daughter has moderate low frequency hearing loss as well, and our son is only mild to moderate high frequency. 

We are continually learning how to navigate it together and to treat them as individuals. We work to understand that just because one might have an obstacle doesn’t mean the other one will have the same. 

Hearing loss is unique but doesn’t define the person, and the environment can have a big impact on the child if they are well supported. 

While we can’t predict what the future holds for their hearing, we don’t take it for granted and understand its vital role in every aspect of a child’s life. We are grateful for the ways this journey has shaped us into better communicators and problem-solvers. It has taught us the importance of active listening, clear expression, and removing distraction as much as possible when communicating. 

Someone with hearing loss may rely on visual cues, such as facial expressions and body language. This focus on nonverbals makes us more attentive and empathetic to others. Also, knowing how vital clarity is for someone with hearing loss, we practice being at eye level, enunciating our words, and maybe rephrasing our message to make sure it’s easy to understand and always exposing the kids to as many words and meanings as we can. 

This has helped my husband and I have better connection with each other and as a family and improve our communication skills in personal and professional interactions.

Our Advice

Advice I would give to a family just getting a diagnosis is to first know that it’s okay to feel any emotions that come up. Everyone processes the information differently. Some parents feel guilt or are scared of the unknown. Since more than 90 percent of children born with a hearing loss have typical hearing parents, we know feelings of shock have to occur frequently.

As parents, the sooner we acknowledge that the situation feels tough or overwhelming—and accept that it’s okay not to have all the answers—the sooner we can come to terms with the world of hearing loss and embrace it. The more we learn, the better we’ll feel.

Challenges like noisy events will arise, auditory bombardment in social settings, but preparation and understanding help. Teach your children to embrace their hearing aids and take breaks in quiet if needed. Have an action plan for common issues, like lost or malfunctioning hearing aids or uncharged hearing aid batteries.

I always share with parents experiencing a new diagnosis of a hearing loss for their child is to take a breath and know that it will be okay. There’s a supportive community out there—you just need to look. Online forums, social media, and audiologists can connect you with resources.

In fact it is how I learned about Hearing Health Foundation—through seeking more information and researching things online. Reading an issue of Hearing Health magazine, I saw another mother who shared her experience with her child, and that is what encouraged me to reach out to her. And I realized there are families out there who are able to and want to share advice.

Each season brings about new challenges for children with hearing loss, new schools, camps, after school activities, new teachers, or babysitters. As a family we strive to always be communicating, and as parents we are making sure they have the hearing access they need to feel comfortable and any other accommodations that are necessary.

The kids are growing older and we’ll be reaching new milestones with different things that we are still learning or that they will newly experience. Our hope is by sharing our story it can help another parent feel better and not alone in this journey.

Stephanie Kravitz lives with her family in Ohio.

The Latest Blog Posts