Mom Life: We are a DHH Family

hearing loss, chemo, chemo therapy, chemotherapy side effects, deaf child, deaf hard of hearing, DHH

*DHH is a commonly used acronym for Deaf Hard-of-Hearing and refers to a diminished sensitivity to sound, or hearing loss, that is expressed in terms of standard audiological measures

My husband and I were cramped in the corner of a soundproof chamber.  Our 3 year old daughter was in the hot seat in the middle of the room, sporting oversized headphones on her bald head.  She was taking a second hearing test to see how much damage the 7 rounds of intense chemotherapy had done to her hearing.  As we listened to the beeps grow loud enough for us to hear them outside her headphones, yet still saw no response from her, we knew the damage had happened.  She was in the 50% of children treated with platinum level chemotherapy who received hearing loss as a side effect.

OTOTOXIC:  toxic to the ears,  specifically the cochlea or auditory nerve and sometimes the vestibular system

 hearing loss, chemo, chemo therapy, chemotherapy side effects, deaf child, deaf hard of hearing, DHH

In simpler terms, the medicine used to treat my daughter’s cancer had damaged the inner ‘hairs’ of her ear, permanently.  The damage is irreversible.  Hannah’s hearing loss is called high frequency, which means that she has trouble hearing soft sounds, like the letters L and S.  Because she was 3 and learning all her sounds, we moved quickly to get her fitted for hearing aids, so her language development could stay on track. 

DHH:  Deaf/Hard of Hearing

Our family was already rocked with the cancer diagnosis of our child, and at the time of her hearing loss, it felt like another layer of anxiety and uncertainty was added to our stress.  What does it mean?  How will the hearing aids work?  What will it cost us? What will happen if and when she goes to school? Fortunately, we were referred to a dynamic pediatric audiologist who guided us into the world of raising a DHH Child. 

The act of fitting a hearing aid was rather simple from our point of view, but the technology of hearing aids has exploded in the past 20 years.  No longer is it just an adjustable ‘speaker’ that is inserted into the ear.  Hannah’s hearing aids are digitally set to enhance only the frequencies that her hearing is lacking – they are custom just for her hearing loss.  The volume is set by the audiologist, so Hannah can’t accidentally raise or lower the volume. We let our daughter pick her own colors out – and she picked one pink and one purple, with hot pink glittery ear molds. This helps her identify which aid goes in which ear, and gives her a sense of ownership for her aids.

hearing loss, chemo, chemo therapy, chemotherapy side effects, deaf child, deaf hard of hearing, DHH

The cost of hearing aids is significant.  They can run anywhere from $1000 to $4000 per device. Yes, that price is per ear. Unfortunately, most health insurance providers don’t cover this cost, so usually parents are paying for these out of pocket.  There are some programs that can help with the cost, depending on income and residency. So, if you see a DHH parent frantically searching the ground for a missing aid… join the search!

Once our daughter had her hearing aids, we begun the process of getting her used to wearing them during all waking hours.  It was a significant adjustment, but she did exceptionally well.  During this time, we got a call from the school district that Hannah had been referred to the Early Childhood Special Education program.  She qualified due to her significant hearing loss, and was tested and accepted into the Deaf and Hard of Hearing Preschool program within the Rochester school district.  This program gathers the youngest DHH children and helps them get ready for school.  They are in a special, high tech room with dedicated teachers and speech pathologists who not only teach these kiddos preschool basics, but also the care and intricacies of their hearing devices.  We quickly realized how much these practitioners cared about our kiddo, and are a huge part of why our daughter is a thriving kindergartener today.  She also wears ‘boots’ on her hearing aids at school, so her teachers can speak into a wearable microphone and its transmitted directly to her hearing aids.  

hearing loss, chemo, chemo therapy, chemotherapy side effects, deaf child, deaf hard of hearing, DHH

Our path into being a DHH family was rocky, but made easier by the dedicated medical and school professionals who guided us and our daughter.  There are many different types of hearing loss – our family’s experience is only one small slice.  For some kiddos, being born with hearing loss leads to significant issues with speech and language.  Hearing is such an important sense, especially in this digital age.  Luckily, we have been able to utilize the resources in our community to give Hannah the best possible situation in her DHH world.  We also are lucky to be able to educate others about how Hannah’s hearing loss can be managed today.  We usually talk to people ahead of time about speaking directly to Hannah, and capturing her attention first before giving her specific directions.  If she is in a crowded or noisy place, we speak very closely to her.  We are also picking up some simple sign language skills to communicate with her across the room, and don’t shout directions across the house (this trick works for my hearing child as well!) Raising a DHH child gives us another ripple of challenges as parents. 

But we can handle it. 

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