By Erica Gadbois
“He was one of those kids that had chronic ear infections, but overall, he was healthy,” Rosabel Agbayani says of her son, Michael, in his infancy. “As he got older, we noticed his speech was a little bit off, and I’d always tell the pediatrician that he didn’t speak as well as other kids his age. They said, ‘oh, that can be normal for boys.” However, when Michael was almost 3, a family member who is an otolaryngologist (ear, nose and throat doctor) suggested to Rosabel that she get Michael’s hearing checked. It was then she and Michael found themselves at Rady Children’s Hospital-San Diego.
After an initial meeting with Daniela Carvalho, MD, MMM, pediatric otolaryngologist, director of the hearing program at Rady Children’s and clinical professor of surgery at UC San Diego School of Medicine, Michael worked with Dr. Carvalho and her colleagues in the Department of Audiology to undergo an intensive run of hearing tests. “We wanted to understand exactly the type and level of hearing loss Michael had so we could offer him all the available treatment options,” Dr. Carvalho explains.
After about six months, Michael, Rosabel and their family had a definitive diagnosis: conductive hearing loss, which means sounds cannot penetrate the outer and middle ear. Conductive hearing loss can stem from an array of causes, and while infection can be one of them, Michael’s family and his medical team pursued a firm answer to ensure his care plan fully addressed his specific needs — which would lead to another diagnosis for the young boy.
Around the same time, Michael had two cysts identified on the side of his neck, which spurred referrals to clinical areas including the Division of Genetics/Dysmorphology, which can provide diagnoses behind complex symptoms. “They were able to rule out some conditions and pointed us toward brachiootorenal, or BOR, syndrome,” Rosabel recalls. According to the National Institutes of Health U.S. National Library of Medicine, BOR can affect the development of neck tissues, as well as lead to malformed ears or kidneys, and nearly always causes ear problems or hearing loss. “It only happens in about one in 40,000 people,” explains Rosabel, “so it wasn’t at all the first suspected cause. It’s not a common thing where a doctor would say right away, ‘oh, yeah, you’ve got BOR.’ I’m relieved that Michael’s doctors looked so deeply into this.”
With a cause behind his hearing loss pinpointed, Michael was ready for his first treatment: cyst removal with Dr. Carvalho. “I still remember that day in 2010,” muses Rosabel. “The Acute Care Pavilion was brand new, and the surgery turned out to be a little more complicated than we were all expecting. The cysts ended up being connected to his tonsils, so he had those removed as well. Even though it wasn’t urgent, we figured this would get to the bottom of what was going on.”
Soon after his cyst surgery, Michael was fitted with hearing aids, which Rosabel says was a game-changer not just for him, but for her perspective as a mother of a deaf child. “Our speech-language pathologist/auditory verbal therapist at the time worked really closely with me and my son so we could learn how to truly communicate. At the time, if anyone had asked me if I wanted my deaf child to speak, I would have said, ‘they can do that?’ She wasn’t trying to fix my child. She gave me the tools to help me communicate with him, and my family to learn to communicate with each other. That’s the most important thing with a deaf child — if they don’t start at home, how will they learn and go out into the world?” Between 2010 and 2014, Michael also had four ear surgeries to help with complicated infections, and continues to work with the Audiology team and the Speech-Language Pathology Department to this day.
For Michael and his family, although his hearing loss was never what they expected, they have used it as a source of inspiration and growth. “When something like this happens to your child, at first, or even down the line, it’s easy for things to seem negative,” Rosabel states. “Years ago, I actually started volunteering at Rady Children’s to connect with other families going through similar experiences, and it gave me an outlet to share perspectives, gain new points of view and heal. I then got my Master’s of Public Health so I could continue sharing positivity and helping others in my career.”
Now a full-time clinical research coordinator here at the Hospital, Rosabel says she cherishes her opportunities to work with families going through what are often difficult diagnoses. “I know what it feels like to think there’s nothing you can do, but you can. I try as much as I can to be a voice for them.” Her daughter, too, has shaped her career because of the influence her little brother has had on her. “When I was volunteering, I worked with a music therapist and brought it up to her. They ended up having a conversation about the job, and she said, ‘Mom, this is exactly what I want to do.’”
Today, Michael is 12 and an active and independent sixth-grader who loves baseball and hip-hop music — so much so, in fact, that he’s hoping to make a career as a DJ. “He’s an amazing kid. People always want to be his friend. As a mom, I always used to worry a little; if he’d be accepted. He seems to acclimate to his environment, and he’s just Michael. People don’t see him for his disability. They see him for who he is,” says Rosabel.
Although his hearing has declined a bit over the past few years, Rosabel is a firm believer that the strength and self-advocacy skills he has built with his care team, and with his family, will serve him well even if hearing aids no longer work one day. “That’s why his relationships with all of his care providers are so important,” she explains. “They are all amazing, but I especially can’t say enough about Dr. Carvalho. We call her and Michael ‘The Dynamic Duo.’ She’s like a part of our family. I love how open she is, and how she listens and cares about every question, even about things you might find through a Google search!”
“Learning to raise a deaf child can feel so isolating,” she continues, “but knowing every time we came to Rady Children’s we had a team behind us, cheering us on — that’s something you can’t fake. It’s genuine. Your kids can do great things when they have the resources.”
Published January 2020