By Lacy Hernandez
Lacy’s twin boys as toddlers wearing their hearing aids.
The year was 2001. Thankfully, newborn hearing screenings had just taken effect in Georgia that January. Our twins, James and Riley, were born on August 23. They did not pass this initial hearing screen, so auditory brainstem response (ABR) tests were administered in the hospital. Two weeks after a second ABR with our audiologist, they were both diagnosed with moderate bilateral sensorineural hearing loss. Hearing this news felt like the wind had just been knocked out of me!
Luckily, my husband Julio and I had a thorough and caring audiologist who fit the boys with Phonak hearing aids at 3 months of age. My mother-in-law accompanied me to the fitting appointment for support. As our audiologist proceeded to go over all the instructions, my eyes started to water and my mind began to race. Her voice began to sound like the teacher’s voice in Charlie Brown cartoons: “Wa-waa-wa-wa-waaa.” I couldn’t focus because the worry started to take over.
Would James and Riley ever be able to play sports? Would they have to attend a special school? Would their speech be delayed? So many questions started whizzing through my mind. At that moment, I had to take a deep breath and accept that wearing hearing aids would be the “new normal” for our twin baby boys, and that I would be their advocate until they could speak for themselves.
Nonstop Narration
The infant years seemed pretty overwhelming at times. Keeping the hearing aids in the boys’ ears—they were forever falling out or being pulled out or whistling from feedback—turned into a daily challenge. My goal was to keep the hearing aids in their ears for all of their waking hours to maximize their intake of speech and language. James and Riley qualified for therapy services, and an early intervention therapist came to our house every Saturday to teach me how to work with them using auditory verbal therapy. She encouraged me to emulate her session on my own every day for at least one hour.
So, after breakfast, while the boys were still sitting in their highchairs, I would reach for the small plastic toys I had accumulated and begin their lesson. The goal was to provide them with speech intake to reinforce voice inflection, speech patterns, and new vocabulary, all in a quiet environment. I was challenged to narrate daily life to them all day long. Babies and toddlers with hearing loss benefit from hearing more spoken language than typical hearing children in order to hit developmental milestones at the appropriate rate. So, constantly talking to my sons—explaining our daily routine, stating the obvious, and discussing everything I could think of with them—became my everyday way of life.
When James and Riley were 2, Julio and I found out that we had been blessed with another pregnancy; this time, a singleton. A maternal-fetal specialist followed my pregnancy, since I was over 35. We had never determined the cause of our twins’ hearing loss, even with genetic testing done when our boys were infants. So, the thought of having another child with a hearing loss was a bit scary, but we knew we could handle whatever came along.
In October 2004 Virginia was born and passed the newborn hearing test. She had an ABR when she turned 1 month old, which she also passed. After learning so much about the benefits of auditory verbal training with our boys, it had become second nature for Julio and me to narrate daily happenings, and we frequently read aloud to Virginia. We attribute her love for reading partly to our intentional focus on auditory input at an early age. Having three kids ages 3 years and younger was pretty busy. The boys continued speech therapy and auditory verbal therapy until they were 4.
A Growing Family
When the boys were toddlers, I wasn’t prepared for the frequent visits to see our audiologist for earmold fittings every two weeks in order to keep up with the rate of their growing ears. Sometimes, the earmolds would be too small by the time I received the most recently fit sets in the mail! We developed a rapport with the salesman at a place we called “the little store” just outside our ENT office. He could predict our purchases of two Ring Pops, four Tootsie Rolls (two for Mom), and two Reese’s Peanut Butter Cups as a treat after each visit.
Ear infections are more frequent in babies with hearing aids because fluid becomes trapped in the middle ear due to the earmold. We learned tricks such as earplugs for swimming and keeping a supply of prescription ear drops on hand to relieve ear pain and infections. The boys had multiple surgeries each to put in or take out ear tubes, and they each had an adenoidectomy before kindergarten to help with the ear infections.
Julio was instrumental in helping with managing medications, scheduling follow-up ENT visits, and acting as the family cook, one of his favorite pastimes. Virginia enjoyed tagging along to the ENT visits because she would get first pick of the stickers and occasionally would be granted permission to choose two stickers, a highlight for her.
In August 2006, when James and Riley turned 5 and Virginia was 2, Julio and I shared with them the wonderful news that they would have another sibling joining the family in the New Year. James, Riley, and Virginia were excited to welcome their sister Lily into the world in January 2007. Just like her sister, Lily passed the hearing screen shortly after birth. Julio and I followed up with an ABR when she turned 1 month, which resulted in Lily being diagnosed as a typical hearing child. Now with four children ages 5 and under things really got hectic and loud, to say the least.
School Years
When searching for an elementary school, we were lucky to find one with a small class size. James and Riley started mainstream kindergarten with just 12 students per class. I developed a standard repertoire of information to share with the teachers and nurse before the start of school, explaining the boys’ degree of hearing loss and information about their hearing aids and the FM system they used. Before fourth grade at a new school, the boys made a video, a mini Hearing Loss 101 for their new teachers and classmates. They never shied away from confidently answering questions from other kids about “those things behind your ears.”
James and Riley each persevered when things got tough and have become stronger individuals, their mother says.
During their impressionable middle school years, James and Riley no longer chose brightly colored earmolds corresponding to their favorite football teams, but rather grew their hair a bit longer to conceal them. Tucking hearing aid batteries into car compartments, backpacks, sports bags, kitchen drawers, and my purse became second nature to our family. Julio and the girls have vivid memories of frantically searching for a hearing aid in the sand after it fell out of a beach chair. We even once found a hearing aid hung on our family Christmas tree when the boys were 2 years old!
The girls also have grown accustomed to living with brothers with hearing loss. They are used to speaking louder at the beach or pool, or in any situation where the boys are not able to wear their hearing aids.
As recommended by our ENT, James and Riley will undergo further genetic testing this spring, to potentially help them learn more about new genetic discoveries that have arisen since they were last tested, 18 years ago. As we have every year for almost two decades, we paid a visit to “the little store” this year at our yearly hearing test and hearing aid check.
Our family is also preparing for the boys’ high school graduation this spring. We are proud of their hard work and dedication to their studies, jobs, and other activities. James and Riley each persevered when things got tough and have become stronger individuals. They both would like to help others navigate their hearing loss journeys.
James plans to study business at Wharton at the University of Pennsylvania and hopes to minor in deaf studies. Riley has decided to attend the University of Southern California as a Dean’s Scholar. College will be a new journey for both of them and they will face new challenges, but we are certain that they are prepared for what is ahead. They have learned to advocate for themselves, to manage, and to thrive.
Lacy Hernandez lives with her family in Georgia. This story originally appeared in the Spring 2020 version of Hearing Health magazine. See the full article here with accompanying first-person stories from Riley and James.
