Born with hearing loss, Jack, 3, makes great progress with ‘super ears’
After he failed his newborn screening test, Jack underwent an auditory brainstem response evaluation (ABR) when he was three months old at Lurie Children’s that confirmed his diagnosis of profound hearing loss.
“This was a whole new world for us,” said Jack’s mom, Ashley of she and her husband, Sean, who have two daughters with no hearing loss. “Jack is the first person in our family born with hearing loss, which we found later through genetic testing was caused by a Connexin 26 gene mutation that was passed down from both mom and dad.”
Fortunately, the suburban Chicago family found all the support and treatment they needed at Lurie Children’s. The hospital is home to one of the country’s largest and most experienced cochlear implant programs, founded more than 30 years ago by pediatric otolaryngologist Dr. Nancy Young.
At 8 months old, Jack underwent cochlear implant surgery with Dr. Stephen Hoff, getting electrodes surgically implanted into both of his cochleas.
“We call Dr. Hoff a superhero because he gave Jack ‘super ears!’” Ashley said. About a month later, the devices were activated. At that time, the family started meeting with Cara Donahue, Jack’s audiologist, and Michelle Schuster, who Jack sees for auditory-verbal therapy, or aural habilitation.
“Cara makes sure his processors are mapped correctly and helps us stay up-to-date on all of the latest technology,” Ashley said. “And the speech therapy and aural habilitation Jack has received have exceeded our expectations.”
Today, Jack is 3 and has endured hundreds of hours speech therapy. He still follows up with Cara every six months to ensure his implants are programmed correctly. His parents could not be prouder of his progress. Jack attended an early childhood program at Child’s Voice, a school that specializes in kids with hearing loss, where he was able to learn with peers who had hearing aids and cochlear implants. He now attends a mainstream neighborhood preschool, where he is learning to independently navigate his cochlear implants.
“He is currently showing no delay in speech development and loves chatting with his family and friends,” Ashley said. “He is the most social, lovable little guy you will ever meet. Nothing slows him down!”
When considering her family’s experience with hearing loss, Ashley said, “There will be ups and downs and the journey is not always easy … and each journey is truly unique. We chose to take the cochlear implant track with Jack, and when we see him laughing with his sisters, singing and dancing to music, and chatting with his best friends at school we know that we made the right choice for him. We are forever grateful for Dr. Hoff, his team and Lurie Children’s.”
Learn more about Lurie Children's Cochlear Implant Program.
With the expertise and support of Dr. Shaaban and Lurie Children's Chicago Institue for Fetal Health, Annie gave birth to Emmie and Gracie. Today, the girls are healthy and living life to the fullest.
After being diagnosed with ADHD, Leo began working Lurie Children's Dr. John Parkhurst. Through therapy, Leo learned how to harness his skills and strengths to better communicate with his family and friends.
In 2021, 13-year-old Isabella started suffering from chronic nerve pain across her entire body. While the road to diagnosis took time, her eventual outcome thanks to Neurosurgeon Dr. Jeffrey Raskin was a life-changing one.