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Hearing Loss and Sickle Cell Disease Help Empower Khen to Achieve

March 03, 2021

Khen was only four years old and already enduring treatment for sickle cell disease at Ann & Robert H. Lurie Children’s Hospital of Chicago when she experienced profound hearing loss.

She remembers one of the first moments she became aware of her deafness.

“Everyone was looking at me,” said Khen, now 21. “I was with family, playing with my cousin, and I couldn’t hear my mom calling my name.”

Cochlear implants like this one similar to what Khen has are surgically-implanted medical devices to help patients experiencing deafness. The implants replace the function of a damaged inner ear and are designed to mimic natural hearing. Image courtesy of Cochlear Americas

Already trusting Lurie Children’s, Khen’s mom Lori decided to seek help from the hospital’s Division of Otolaryngology. There, Dr. Nancy Young leads the Cochlear Implant Program, overseeing more than 2,000 cochlear implant procedures since 1991.

Khen’s hearing was restored by a cochlear implant after Dr. Young performed implant surgery in 2004.  To hear, Khen wears a speech processor during the day. The cochlear implant was initially activated and continues to be fine-tuned by Beth Tournis, AuD, Khen’s audiologist of 17 years.  Khen immediately made rapid progress and was able to thrive academically and socially in school with hearing children. She hears “exceptionally well with it,” said Beth

Although regaining hearing was a positive life transforming childhood experience for Khen, she does recall challenges. For example, she remembers feeling self-conscious when wearing her hair up, exposing the speech processor. She also remembers not being able to wear her processor when swimming because it was not water proof and how difficult it was not being able to hear.

“But I realized those are small things, and I can hear, and there are other people like me,” Khen said. Khen is also glad that that technology has steadily advanced. It is now possible for implanted children to hear while they swim, and speech processors have become smaller.

Khen, now 21, has managed her sickle cell disease and hearing loss and will become a nurse

Khen’s strength and determination persisted as she grew up. Today, she is pursuing a nursing degree at Saint Xavier University in Chicago.

“Throughout the years, there were so many different nurses in my life who made a difference and helped me. It inspired me to want to make a difference to young patients in the same way,” Khen said.

Until she graduates, Khen will continue to receive hearing health care from Drs. Young and Tournis, and for sickle cell disease with Alexis Thompson, MD, MPH, Head of Hematology at Lurie Children’s. Khen said her visits to the hospital these days often feel like happy family reunions.

Meanwhile, Khen uses her experiences to inspire young people facing similar diagnoses.

While in nursing school, Khen wrote a book for children about dealing with deafness and is working on one about having sickle cell disease. She likes volunteering with children so they can see an example of someone who has been empowered by her obstacles.

“It’s OK to be feel alone and that things are tough,” Khen said. “At the end of the day you are not alone, and you have to be true to yourself – you’re the one with the superpower.”

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