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OK to Be Different

September 02, 2015

"Yes, I am deaf and therefore different, but I’m not the only one," said Marne Sullivan during her 8th-grade commencement speech in June before 400 fellow students and 1,600 guests. "We’re all unique in our own ways. We all have a story to tell like I’m telling mine."

Marne, 15, was diagnosed with auditory neuropathy spectrum disorder (ANSD) as a baby and underwent cochlear implantation at Ann & Robert H. Lurie Children's Hospital of Chicago when she was 3½. She admits that getting up in front of such a large audience was a daunting proposition. But her theme of tolerance and self-acceptance struck a chord with her audience.

"At the beginning of the ceremony I was freaking out," says Marne, now a high school freshman. "I was so nervous! I calmed down a bit after I read the first paragraph because I could tell people were interested in what I had to say and understood the point I was trying to make."

Marne was one of the first ANSD patients to receive a cochlear implant at Lurie Children's, whose Audiology and Cochlear Implant Program is one of the largest and most experienced in the US. It is also a national leader in treating children with ANSD, a hearing disorder that is particularly difficult to diagnose and treat. The cochlear implant program is led by surgeon Nancy M. Young, MD, the Lillian S. Wells Professor of Pediatric Otolaryngology, who has performed more than 1,300 cochlear implantations since 1991. It includes a team of audiologists, aural (re)habilitation therapists, social workers, education coordinators, hearing aid technicians and others, who collaborate to provide patients with a variety of hearing disorders with access to sound and the opportunity to reach their full potential.

A diagnosis of ANSD describes a variety of hearing problems involving "misfirings" of the auditory nerve or issues affecting the nerve’s connection with the cochlea. The result is a disorganized transmission of sound to the brain.

"Unlike typical sensorineural hearing loss, it is not unusual for children with ANSD to pass newborn hearing screenings," says Dr. Young. "In addition, hearing aids typically do not improve hearing, and may even interfere with the child's ability to hear. Many children suspected of having ANSD are referred to Lurie Children's because of our expertise in confirming the diagnosis and in providing the appropriate counseling and multidisciplinary care."

Marne has attended mainstream schools since second grade. She is an active teen who takes honors classes, plays field hockey and has an active social life. She has annual follow-ups with Stephanie Yaras, her audiologist at Lurie Children's since Marne was four months old.

"To say we’ve been thrilled with the entire cochlear implant team at Lurie Children's would be an understatement," says Marne's mom, Molly.

Marne says she wants to be either a writer or a fashion designer. But regardless of her career path, her mom has no doubt that she'll be a success.

"Being deaf doesn't stand in the way of anything Marne wants to do," says Molly.

Lurie Children's Audiology and Cochlear Implant Program is supported by the Foundation for Hearing and Speech Rehabilitation, among others.

This article originally appeared in the September 2015 issue of Heroes Update.