Born to Listen
At the end of a suburban cul de sac, a 12-year-old named Sophie is teaching her younger sister, Olivia, how to ride a bike. Sophie carefully demonstrates turning, speeding up, and most importantly, braking, as she calls out instructions to little Olivia who runs beside her. “I'm more of a tomboy,” said Sophie. “I like climbing trees and falling out of them and getting back up and doing it again and playing with rocks and attacking ants and then running away. All that stuff.” Sophie being more of a tomboy isn’t the only way the sisters are different; she was born with hearing loss while Olivia has typical hearing.
“Really there's absolutely no difference parenting Olivia and Sophie,” said John, the girls’ father. “Quite honestly, I often forget that Sophie's even deaf. She’s so well adjusted.” Sophie’s hearing loss doesn’t seem noticeable now, but when she was a newborn, her diagnosis stunned her parents, Janeth and John.
"THIS CHILD WAS BORN TO LISTEN." —Janeth, Sophie’s mom
SOPHIE WEARS A BAHA (i.e., Bone Anchored Hearing Aid) TO GAIN ACCESS TO SOUND
Sophie was born with aural microtia and atresia with both ears. In microtia, the external ear is not fully developed and atresia is a condition in which the ear canal is either absent or closed. These conditions frequently occur together and can result in a moderate hearing loss in the affected ear. Bone anchored hearing aids are recommended to provide auditory access. Sophie’s parents, Janeth and John, had no familiarity with their newborn’s conditions. “We didn't know anything about microtia and atresia when Sophie was born,” said Janeth. “We had never seen a person or a child with microtia and atresia. None of the members in our immediate family had hearing loss or little ears or any other anomaly.”
Unfortunately, Janeth, John, and Sophie lived in a community that wasn’t very familiar with her condition, either. The family’s doctors advised them to wait until Sophie was five or six to pursue treatment, but to Janeth and John, that felt like too long. A former kindergarten teacher and early childhood expert, Janeth knew that the first three years of life are critical for developing relationships and communication skills. By waiting until she was school age to address her hearing loss, they would be limiting Sophie’s ability to communicate. “We needed a different idea,” said Janeth. “We just couldn't sit there and wait until she was six.” They wanted Sophie to be able to hear them say “I love you” and to live a full life in the hearing world as soon as possible.
"PERSISTENCE IS DEFINITELY THE KEY TO A GREAT LISTENING AND SPOKEN LANGUAGE OUTCOME." —Janeth, Sophie’s mom
Sophie’s parents persisted in finding experts who would consider amplifying their young daughter, and they succeeded. At four months old, Sophie received her first BAHA hearing aid. “Everything changed. It really changed her world and our world and you could see results immediately. She could hear us. She could hear her environment around her and it was just such a turning point,” said Janeth. “We're very blessed to find the experts that we did.”
“Don't take ‘no’ for an answer. In Sophie’s case, the experts weren't very educated on this particular condition, so it would have been really easy just to give up and say, ‘this is just how it's going to be,’” said John. “But ask the next question, find the next expert, and keep asking those questions to put your child in the best place.”
The same persistence that helped John and Janeth find experts who would provide appropriate hearing technology for Sophie at an early age continued to pay off as they taught their daughter to listen and speak. For the first few months after she received her BAHA, Janeth and John surrounded her with sounds and new experiences, taking her on long walks and exposing her to the new world around her. “From the beginning, it's been a learning experience for us to be really consistent in what we do and provide for Sophie,” said John. “Again, she took to the technology early on, so she knows that she must wear her equipment at all times. Making sure that the equipment is operating correctly takes consistency and persistence.” As soon as she was amplified, they ensured that she wore her BAHA during all waking hours, a key component of the Listening and Spoken Language (LSL) experience.
"I DON’T THINK HEARING LOSS LIMITS ME FROM MY GOALS AT ALL." —Sophie
More than a decade later, Sophie is flourishing in the mainstream. She loves playing volleyball, swimming, running track, and hanging out with new friends she’s made in middle school. “I don't think hearing loss limits me from my goals at all,” said Sophie, “because I can still hear and I can still make a difference in the world.”
Sophie was born with microtia and atresia, conditions which, together, can result in a moderate conductive hearing loss. With microtia, the external ear is not fully developed, and atresia is a condition in which the ear canal is either absent or closed. For more information on microtia and atresia visit https://www.aussiedeafkids.org.au/a-child-with-microtia-and-atresia.html