Jaylianne Rivera was a typical, healthy 5-year-old, enjoying everything like her friends in her homeland of Puerto Rico. Until one day, while participating in a school field day with her kindergarten classmates, her mother, who was observing the class, noticed something unusual. The field day featured sports, running, and playing games, with loud music entertaining them. As Rivera would play, she would come up close to the speaker with no reaction.
The teachers then directed the children to do certain activities one by one, but Rivera was the last to respond. Her mother knew something was wrong. She questioned Jaylianne and noticed she had trouble hearing.
So, she immediately took her to an audiologist to be tested. “At first, I was in shock. I didn’t know what was happening. I was crying and very sad,” said Edmarie Santiago, Jaylianne’s mother. The audiologist tested her daughter and said she needed to see an otolaryngologist or ENT, who confirmed she lost her hearing.
The five-year-old was diagnosed with bilateral profound hearing loss due to Mondini malformation and enlarged vestibular aqueduct (EVA) syndrome. The doctor suggested that Rivera be fitted for cochlear implants, a small electronic device that electrically stimulates the cochlear nerve (nerve for hearing). The implant has external and internal parts. The outer part sits behind the ear and picks up sounds with a microphone. It then processes the sound and transmits it to the inner part of the implant.
In Puerto Rico, cochlear implants would cost $80,000 out of pocket– just for the surgery. Device costs would be additional. Knowing that was out of reach financially, Santiago took to the internet and started researching options. She decided to move to Tampa, where prices could better fit her budget. Jaylianne received her first cochlear implant in 2019 and her second in 2020.
Her audiologist then referred her to Tampa General’s Auditory-Verbal Therapy Program, one of just a few programs in the region. Auditory-Verbal Therapy is a specialized therapy type designed to teach a child to use the hearing provided by a hearing aid or a cochlear implant for understanding speech and learning to talk. The child learns to develop hearing as an active sense so that listening becomes automatic, and the child seeks out sounds. Hearing and active listening become an integral part of communication, recreation, socialization, education, and work.
Denyse Sierra-Peguero is the speech-language pathologist who started the AVT program earlier this year and has exclusively worked with Rivera. Sierra is bilingual, which has been an asset in working with Rivera and her mom. “Fortunately, Jaylianne could hear for the first five years of her life,” Sierra said. “When Jaylianne first started the therapy, she could hear some but not understand everything,” she added. “Now she doesn’t have to see a face or use lipreading to understand the conversation. She can understand by just listening – which is huge.
Auditory verbal therapy is a very family-centered, specialized field. Parents are allowed in therapy sessions, so they can learn how to continue lessons at home. “We coach and teach so they can use the strategies at home, too, said Sierra. It’s amazing to see the progress. One of the greatest feelings and so rewarding,” said Sierra.
Sierra further shared the satisfaction of patients and families, “Some patients long to say the simple words of “I love you,” and it’s so special when they can say and hear those words.”
Santiago gives an enthusiastic endorsement of her daughter’s progress. “The experience has been super great! I would recommend it to other parents to come here for therapy.”
As her hearing has improved these past few months, Jaylianne has continued to develop her drawing and painting skills. She wants to be an artist when she grows up. In the meantime, she is proud of the strides she had made with her hearing through her AVT therapy sessions. “It’s good, and it’s fun!”