Q&A: Gavin’s story

A boy working at his desk in school with a few other children behind him at their tables in the classroom.

Meet Gavin — a 4th grader at Tucker Maxon School in Portland. He’s helping to advocate for HB 4104 — a bill that would make sure that kids with hearing loss have access to the tools that they need to grow their language abilities and interact with their peers.

We talked with Gavin and his mother Heather about Gavin’s story and why early detection of hearing loss, early amplification and highly qualified early intervention programs are so important for kids like Gavin.

Q: Can you tell us a little about Gavin?

Gavin is 11 years old. Gavin is an active kid in many ways. He loves learning new things, asking lots of questions about the world around him, and enjoys attending after school sports and being in Boy Scouts of America. Gavin is profoundly deaf but, thanks to bilateral cochlear implants, he is able to hear normal levels of hearing in both ears.

Q: When was Gavin first diagnosed with hearing loss?

Gavin was diagnosed as a newborn through the Early Hearing Detection and Intervention (EHDI) program. Created in 1998, it requires every child born in America to be screened shortly after birth for the possibility of hearing loss. Without the EHDI program, it is likely I wouldn’t have realized that Gavin had a hearing loss for quite some time.

When Gavin was a week and a half old, we scheduled an Auditory Brainstem Response (ABR) test with the audiologist. The ABR test measures the reaction of the parts of a child’s nervous system that affect hearing—specifically, the hearing nerve’s response to sounds. The ABR test confirmed that Gavin had hearing loss.

At just two and a half weeks old, Gavin got his first set of hearing aids. The school for the deaf let Gavin borrow a set of digital hearing aids while I worked on a grant to pay for Gavin’s first hearing aids which were $1.300. Our insurance company would not cover them. They said, “Hearing aids are considered cosmetic.” Our insurance company would not cover the molds or the fitting processes. Luckily for Gavin, the school for the deaf provided these services free of charge to him.

A toddler boy wearing a blue shirt and a hearing aid after having a cochlear implant.

Q: When did Gavin get his cochlear implant?

At 13 months old, Gavin got his first cochlear implant. At that time, children had to be at least a year old. Some states in America, however, are implanting children who are deaf at 9 months of age.

Gavin was bimodal—meaning that he had one cochlear implant and one hearing aid for 9 months until he was able to get his bilateral cochlear implant. Six of the 9 months were spent fighting back and forth with our insurance to cover his bilateral cochlear implant. Finally, Blue Cross Blue Shield said they would cover the bilateral implants, and Gavin got his second cochlear implant in July 2009.

Q: Can you tell us about Gavin’s progress in language acquisition?

Gavin has had a lot of speech therapy in his lifetime. I remember early intervention coming to our house and just working on babbling sounds with him. I remember that a helicopter says, “Wop, Wop, Wop!”

Gavin also has had a lot of mapping/programming of his cochlear implants to make sure he is able to access all of the speech sounds on the audiogram. Just this year, Gavin tested at 100 percent intelligible when he spoke to an unfamiliar listener. Gavin’s speech therapy nowadays is more of a fine-tuning. He can even sing on pitch! Gavin talks so clearly that if you couldn’t see his cochlear implants, you would have no idea he is profoundly deaf.

It’s amazing how fast these kids can catch up to their normal hearing peers. Most children like Gavin are leaving early intervention preschool, listening and talking, ready to go back to their neighborhood schools for Kindergarten.

Q: Why are you advocating for this bill?

This bill would help children like Gavin. I don’t think it’s fair that insurance companies tell parents that hearing aids are cosmetic.

Furthermore, insurance companies should not be telling parents that the bilateral cochlear implants are experimental as a way to get out of covering the surgery (In 2009, the surgery cost $83,000). Nowadays, it can cost up to $100,000.

If the child is a candidate for bilateral cochlear implants then the child should receive them. No family should have to fight their insurance companies to the extreme that I did so their child can receive a bilateral cochlear implant.

Let’s give these children what they need. It will cost society far less in the long-run to invest in necessary amplification and highly qualified early interventions early on. Early investments in accessing sound means these children will have a greater ability to obtain a higher education, pursue a career, and live independently.

Q: Why is having access to sound sooner rather than later so important for kids?

There is short window of time during which we can wire the brain for auditory input, which will avoid auditory deprivation. Children who do not develop auditory connections/pathways and learn to listen in the early years of life zero to three, do not get the same opportunity later in life because of the lack of neural plasticity. We like to say “Eyes open, ears on.” These children need to have access to sound all waking hours.

A photo of a boy at a concert holding up a "premium VIP" card.

Questions for Gavin:

Q:  Why do you think this legislation is important?

To help other kids like me to be able to hear the best they can.

Q: Why are your cochlear implants important for you?

I love to hear! This world is full of sound, everything makes a sound! I enjoy hearing others talking, watching movies and listening to music. I enjoy going into Mcdonalds and placing my own order without the help of anyone. I listen and talk for myself! The only thing I don’t like about hearing is when I hear my mom say, “Gavin, please take the trash out.” I don’t like chores!

 

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