Raleigh Family Faces Hearing Loss Head-On
In February 2015, Raleigh native Rachel Skergan, 12, made her North Carolina Theatre debut as ballet girl “Angela Robson” in the critically-acclaimed “Billy Elliot: The Musical.” Impressive under any circumstances, Rachel’s success is particularly sweet because she was born with severe-to-profound (not congenital) hearing loss.
“Our family was devastated when Rachel was diagnosed with hearing loss, and we really didn’t know what was possible for her,” says Rachel’s mom Natalie Skergan, who experienced an uneventful pregnancy with Rachel.
A week after Rachel’s diagnosis, a parent educator from North Carolina-based BEGINNINGS came to the Skergan house to provide education about Rachel’s hearing loss and services available to her in the area. The educator talked about communication options, and the family first learned that there were more options than just sign language for a severe-to-profoundly deaf child.
“We were excited by the realistic possibility of her learning spoken language,” Natalie says.
Photo of Cochler ear implants courtesy of MED-EL
A New Solution: Cochlear Implants
The Skergans moved forward with the decision to pursue cochlear implants. Rachel received her first cochlear implant at just 10 months old at UNC Hospitals in Chapel Hill. Two years later, she received a second cochlear implant in her other ear.
The family chose MED-EL devices based on the technology. It just so happened that the company’s North American headquarters were only a few miles up the road, in Durham. Natalie went so far as to work with the company and was selected to be one of the company’s first Patient Support Team members, a position that she still holds today.
Over the years, the Skergans’ roles of advocacy and self-advocacy have evolved. “We were Rachel’s greatest advocates,” Natalie says. “Because she was diagnosed during the newborn screening process, there was emphasis on the small window of time for intervention. Within a month, we were strongly advocating, full force.”
Rachel has acquired spoken language that Natalie says exceeds her normally hearing peers, due in part to auditory-verbal therapy for the first three years of her life.
“Many people, including teachers and other students, don’t realize she has hearing loss,” Natalie says. “Early on, I would go into school and explain how cochlear implants work to her teachers. By about second grade, though, Rachel decided that she no longer wanted me to do that for her. She decided to self-advocate. She was comfortable answering questions from kids, and confident asking a teacher to repeat a question. If she needs to sit near the front of the class to follow along better, she just does it.”
Rachel has also outgrown the need for support from BEGINNINGS. However, the Skergans remain involved with the organization as a resource for other families when called upon. Natalie, still moved by the impact that early screening has had on Rachel’s life, currently serves as co-chair of the North Carolina Early Hearing Detection and Intervention’s state advisory committee.
“We meet with various professionals across the state and work to track newborn hearing screening,” Natalie says. “The goal is to ensure that the EHDI process is happening across the state. Rachel’s early identification was such a key component to her success. I’m very passionate about making sure that other families have that benefit.”
Natalie cites worries along the way that evaporated as she observed her daughter succeeding in school, in dance and in life.
“I remember thinking about Rachel finding friends and fitting in,” Natalie says. “I worried about her being isolated – from the world and from her family. With spoken language, her cochlear implants allow her to be integrated and interact freely with the bigger world. When we realized the possibility, it gave us a huge sense of hope and encouragement. At the time, we were unsure about limitations. But now, we know she can do anything that anyone else can. She can have the same dreams as anyone else. The sky is truly the limit for her.”
Rebecca Novak Tibbitt has a master’s in public health. She is a Charlotte-based writer and communications consultant.
Resources for Children With Hearing Loss
North Carolina Early Hearing Detection and Intervention Program ncnewbornhearing.org
BEGINNINGS for Parents of Children Who are Deaf or Hard of Hearing ncbegin.org
Hearing Loss Association of America hearingloss.org
AG Bell Listening and Spoken Language Knowledge Center agbell.org
HearPeers – MED-EL sponsored Hearing Implant Community hearpeers.com