One Family’s Journey
Mighty Mila
By Katie Petruzziello, New York H&V
Colorful glittery molds. Princess hearing aid cords. Cochlear implant decals. Sparkly retention headbands. My four-year-old daughter, Mila, uses all of these hearing device accessories and more, to proudly and cheerfully show off her hearing aids and now cochlear implants. I love her confidence and one of my goals as her mom is to help her foster that confidence and celebrate the differences that make her wonderfully unique.
Mila is a strong, sassy little spitfire with an infectious laugh and very colorful personality and fashion sense. When Mila was born, she failed the newborn hearing screening in both ears, but after follow-up Auditory Brainstem Response (ABR) testing, we were told that her hearing was within normal limits. We were instructed to monitor her responses and behavior, and have her pediatrician test her ears at her one-year appointment. At that time, with no prior family history of hearing loss, we thought it was just a strange fluke. We nonetheless monitored her responses which appeared typical of a young baby. Mila would respond to us, she would follow simple directions, she would startle at sounds, and the idea that something may be up with her hearing started to fade to a distant memory. When she failed the hearing test at her one year physical, we were once again taken by surprise. This led to additional follow-up tests and eventually the identification of mild sloping to moderate sensorineural hearing loss when she was fifteen months old.
Mila quickly became a pro at using her hearing aids (complete with sparkly ear molds of course!) and immediately started entertaining her Speech Language Pathologist and Teacher of the Deaf with her silly antics during weekly therapy sessions. Even as an 18-month-old, she would excitedly choose from her many decorative hearing aid retention cords each morning and would strut up to her teachers and little buddies in nursery school who would “ooh and ahh” over them, making her grin and feel so proud of her beautiful hearing aids and accessories.
When Mila was almost three years old, her hearing started rapidly dropping for unknown reasons and progressed to a level of profound deafness. Her hearing aids were no longer able to provide her access to sound. She became eligible for cochlear implants, which she got in early 2020, just before all elective surgeries were canceled in New York due to the pandemic. Mila amazed everyone with her fierce determination and unstoppable attitude in learning how to adapt to using her cochlear implants, despite facing pandemic-era challenges: virtual therapy, canceled mapping appointments and masks. She continues to push forward and excel with her tenacious personality.
When picking out her processor colors, we opted for a brown pair, which blends in with her hair, and a white pair, which stands out, to give her optionality now and as she grows up. We let her choose which pair she wants to wear each morning and it’s no surprise that she almost always opts for the white ones. She’s traded in her sparkly earmolds and hearing aid cords for cochlear implant decals and sparkly retention headbands, which she says, “makes them look even more beautiful” and has told us that she loves them and thinks they’re really pretty. We couldn’t agree more.
Since her initial identification, we’ve encouraged Mila to embrace and be proud of her hearing devices. I love to see her show off a new decal or headband, or when she happily explains to an inquisitive child what “those things on her ears are”. At almost five now, she is starting to notice that most other children and adults don’t use equipment. I’ll always remember the day, a few months after she received her implants, when Mila and I were reading a book and she stopped me. She started flipping through the pages looking at the many children represented throughout the story. She asked me, “Why don’t any of these kids have cochlear implants?”
My heart sank. The unfortunate reality is that we live in a world where children with hearing loss don’t often see themselves represented in children’s literature, toys, television shows, or other forms of media. They don’t see themselves represented and that makes them feel different, and not in a good way. Just as unfortunate, children who are hearing may have never met another child who uses hearing aids or other devices. They also don’t have natural opportunities to learn about hearing aids, cochlear implants, or sign language. They don’t have the opportunity to see how cool hearing devices are and see that kids with hearing loss can do anything and everything they set their minds on.
On the day that Mila asked me that question, I decided to do something about the lack of representation and awareness. I started writing Mighty Mila, envisioning a fun, engaging children’s book featuring a main character with hearing loss. My goal in getting it published is to represent and empower our kids who are deaf/hard of hearing, while also promoting awareness, inclusion, and celebration of differences among kids who are hearing. I’ve also worked closely with Mila’s amazing Teacher of the Deaf, Ashley Machovec, to create fun, educational activities that go along with the book. These activities help parents and educators leverage the story to promote further listening, comprehension skills, and language development. Mila herself has been excitedly helping out during this journey–whether it’s by providing input into the character’s colorful outfits, inspiring the many little details incorporated into the illustrations, or personally autographing books! She thinks it’s “pretty cool” that she’s a character in a book and is excited that other kids like her will be able to see themselves in a fun story highlighting a deaf character.
I may always worry about the possibility of Mila losing some of her amazing self-confidence that helps make her sparkle, but I’ll do all I can to prevent that and help empower her, and other kids with hearing loss, to see themselves as the fierce, unstoppable, mighty kids they are. ~
Editor’s note:
For more information about Mila and her hearing loss journey, the Mighty Mila children’s book, and to download free educational worksheets and activities, visit www.mightymila.com.
H&V Communicator – Fall 2021