How hearing loss impacts the whole family
In most ways, Cara Carson is a typical nine-year-old girl. Quiet and shy, the third grader stays busy with school work and friends, skiing and competing on a synchronized ice skating team. And the fact that she wears a hearing aid and struggles with balance issues doesn’t hold her back from any of it.
When Cara was born she passed her newborn hearing screening. As she grew, though, something seemed off to her mother Fawn Carson. An occupational therapist, Fawn was concerned when her daughter didn’t walk as early as her other two children. Though normal in seemingly every other way, Cara lagged behind in her gross motor skills. She sometimes got a glazed look in her eyes and listed to the side, and often took unexplained tumbles.
“When she was born everything was fine developmentally but she was a bit late on her milestones, like crawling, rolling over and walking,” said Fawn. Thinking she was having seizure type activities along with her balance issues, her parents took her for a full workup including an MRI. The result? According to the neurologist she was fine, and they had nothing to worry about.
But the balance issues continued. When Cara was in preschool, a significant fall down a boat well resulted in a blow to her head that required stitches. Otherwise, she seemed fine, demonstrating no concussion symptoms. Kindergarten was uneventful, though at times Cara just didn’t seem to hear them calling her name. The turning point for the Carsons came the summer before first grade when Cara, fell off of a stool and hit her head. Her parents Fawn and Brent immediately suspected a concussion. She seemed to recover after a couple of days.
But for the Carsons everything was about to change. Once Cara started first grade, she suddenly began to struggle in school. “Cara would come home and I’d look at her papers and it was crazy! Like she didn’t even understand one thing that was going on,” Fawn said.
Meanwhile the teacher was perplexed as well. The struggle went on for about a month until the light bulb moment for their family came in the form of a standard school hearing test: Cara had failed it.
A full hearing screening shortly thereafter revealed that Cara had mild hearing loss in her right ear, and mild-to-moderate loss in her left ear. A subsequent CAT scan revealed enlarged vestibular aqueducts, a condition also known as EVA. With EVA, the canals in the cochlea are bigger than most peoples’; a blow or other trauma to the head causes fluid to rush through the canals and damage the hair cells. Cara’s doctors suspect that her fall the summer after kindergarten had caused a significant hearing loss, resulting in her difficulties in first grade.
Like any parent, Fawn was initially upset. “When it came to the diagnosis I was pretty devastated about it,” she said. “I think moms tend to just be a little bit more … you know, I just was looking at the whole picture … and my husband was more like ‘It’s fine. We’ll get through this, she’ll be fine. Some people wear glasses. Some people have to have help with hearing.’ He was a lot calmer.” Although frustrated that they had seen so many doctors previously and none had suggested a hearing test, they were relieved to finally have some questions answered.
Fortunately the Carsons have a strong support system, not only in the form of family and friends but in doctors, audiologists and in Cara’s classroom as well. The school already had an FM system in place to help those with hearing impairment; because she struggles with extraneous classroom noise Cara wears a special attachment to her left hearing aid called a “boot," while the teachers wear microphones. An aid checks her equipment daily to make sure it is working properly, and when she is working on a group project the other students are given a microphone so Cara can hear them better. In addition, Cara receives help from a teacher for the deaf and hard of hearing who helps her with her advocacy skills and goes over the vocabulary for the week.
“In general, she’s not any different than any other child,” said Fawn. “Kids have academic areas that they’re stronger in than others, and sometimes giving them a little extra boost in tutoring helps with their confidence. But when you have an “extra” thing factoring in, I think establishing those relationships with the people in the school system and just really having that great connection is even more vital.”
Instilling a sense of self confidence is vital as well; Cara has been ice skating since she was three, when her parents signed her up for lessons to help her with balance. She has been a member of a competitive team for two years now. She stays active upon advice from Dr. Cliff Megerian of University Hospital Cleveland; although they are always concerned about hits to the head, he advised them not to “put her in a bubble," and to let her live a normal life.
As far as advice to others whose children are diagnosed with hearing loss or impairment, Fawn recommends being assertive about your child’s care. “I think it’s important to be frank with the doctors and don’t be afraid to ask a lot of questions. Talk about different issues as they grow, and make sure you have a really good relationship with your audiologist and your physician.”
Support groups are also helpful; the Carsons became involved with Helping Hands, which Fawn reports has been a vital resource for the family. It has allowed Cara to see that if children whose hearing is more impaired than hers can find solutions, she can as well. “Plus it’s not a bad thing to be around kids of all different levels and figuring out that should your hearing ever get worse that you have options.”
Throughout her busy, active childhood, the course of Cara’s EVA continues to unfold. She could continue to lose hearing and eventually need cochlear implants, or could stay where she is her whole life. Fawn happily reports that since her initial hearing test, her hearing hasn’t changed. And if it does? Fawn isn’t worried.
“The technology that’s coming out is amazing. By the time she reaches adulthood who even knows what is going to be available for her?” said Fawn. “She’s going to be just fine.”