CLARENCE CENTER, N.Y. (WKBW) — Meet Miles Modicamore.
He is like any other toddler. He loves his toys, music and of course, his mom! But, when Miles was born, his parents received unexpected news from the doctor.
"When Miles was six days old we went to buffalo hearing and speech to have the appointment and we found out that he was completely deaf," said Stacey Modicamore, Miles' mom. "He has bilateral sensorineural hearing loss."
Bilateral sensorineural hearing loss is a condition that typically affects people when they are older. It is caused from damage to the auditory nerve.
According to the National Library of Medicine, this type of hearing loss only occurs in 0.2% to 0.4% of live births, translating to around 40,000 children a year in the US. Like Miles, it affects both ears in about 2/3 of those cases.
After Miles' diagnosis, he was enrolled in an early intervention program at Erie County Medical Center. This allowed him to receive cochlear implants when he was nine months old. His reaction to hearing for the first time is priceless.
"I just coudn’t believe that two seconds before heard, he wasn’t hearing anything," Modicamore said. "But then in that moment, I knew he was going to be able to hear everything, the entire world."
Miles' procedure made him the youngest cochlear implant recipient in Western New York. After his procedure, Miles enrolled in treatment at Buffalo Hearing and Speech Center.
There he worked with three different hearing loss professionals — a speech pathologist, a teacher, and an audiologist. Each of them worked with Miles and his family on different focuses of hearing.
Miles' speech pathologist, Monica Hondzinski worked on developing his speech.
"It would look like a lot of one on one vocabulary, drilling books," Hondzinski said. "We talk about toy selection with parents, book selection with parents so that the parent knows what's expected of them every day."
His teacher, Ellen Lutes, worked on the awareness of sound and recognition of words.
"Yes. A child might be hearing things with the devices, but the baby might have not heard those certain sounds before." Lutes said. "For normal hearing kids it can only take about seven times for kids to connect the word and an item together. For, kids with hearing problems, it can take them over 100 times. So it's all about repition in what they are hearing."
Typically in the early intervention programs, kids are in the programs until around 3-5 years old. Miles was able to complete the program by the time he was 2.
Lutes and Hondzinski both said that is rare for children to do. They credit Miles parent's for early intervention and consistently wearing his devices.
"The longer the child is without the sense of sound, there's going to be a language delay," Hondzinski said. "In regards to cochlear implantation, we want to do that as soon as possible so the child can start hearing and start making sense of sound. Miles getting the implants early helped."
"With Miles, just because he had been wearing the devices from such an early age, I think his brain was just moving along way faster," Lutes said. "He was just understanding and learning so much faster than his peers."
After Miles finished his program with Hondzinski and Lutes, he continued to work with his audiologist, Michelle Dube. On top of the consistency of wearing his devices, she mentioned another important factor into Miles' success in the program.
Shortly before his procedure, the FDA lowered the minimum age requirement to receive cochlear implants from 12 months old to 9 months. This change allowed Miles to receive the title of youngest implant recipient, but it meant more than just a title in the long run.
"If you can do [cochlear implants] earlier at nine months instead of three months later at 12 months, it just gives them that advantage of starting to hear sooner," Dube said.
Like Hondzinksi and Lutes, she emphasized the importance of the parents intervention throughout the process and making sure the child is wearing the device.
"We have children that are implanted or wear hearing aids, and if you’re not wearing those devices, all the time that you’re awake, you’re not gonna make the progress of a child who wears their devices all the time," Dube said.
Miles and his families efforts to better his hearing and buying into the practices they learned at the Buffalo Hearing and Speech Center, Miles is now hearing at normal levels.
His remarkable progress landed Miles a spot in a research study by Northwestern University on youth hearing loss and early intervention.
Miles' mom, Stacey, has turned her son's journey into an opportunity to become a voice and advocate for early hearing intervention. She is a member of the advisory panel of the New York State Department of Health Early Hearing and Intervention Program where she helps shape laws and legislation around youth hearing loss.
"It's such a rewarding experience," Modicamore said. "I didn't know anybody with hearing loss at the time I joined so both my husband and I felt very alone. Getting involved and being proactive, doing all the things we did for Miles, now spreading that out with the ability to help other families is just incredibly rewarding."
After seeing how well Miles has done with his implants and to see him grow into the bright and energetic little kid he is today, Modicamore is filled with happiness after all the struggle.
"To be able to see him participate in all of these you know sports and experiences just like his hearing peers do without missing out on anything has just been absolutely wonderful."
