Teddy Triumphs Over a Failing Heart and Hearing Loss

teddy had profound hearing loss and was born with a serious heart defect

​Learning that your 2-year-old has profound hearing loss is difficult for any family. It was particularly devastating for Stephanie and Mark Fellinger, whose son Teddy had already undergone a heart transplant at Ann & Robert H. Lurie Children’s Hospital of Chicago. “When we received the diagnosis of hearing loss, I remember thinking, ‘What more could be given to this child to overcome?’” says Stephanie.

Teddy, now 3 ½, was born with hypoplastic left heart syndrome, a serious birth defect causing the left side of his heart to be improperly formed. At just eight days old, Teddy underwent  open-heart surgery performed by cardiovascular-thoracic surgeons in Lurie Children’s Heart Center.  

Although the surgery was successful, Teddy did not recover well, and spent all but 12 days of his first four months of life at Lurie Children’s. There were problems with the right side of his heart as well, and when Teddy was readmitted to the hospital, his heart was failing. Teddy needed a heart transplant, and was put on the transplant list with the highest priority.

“The typical wait time for a heart in this situation is 60 days – which Teddy didn’t have,” says Stephanie. “Amazingly, nine days after he was put on the list we received a call that a heart had been found for him.”

The surgery was successful, and after his recovery Teddy began  physical, speech, occupational and developmental therapy to help him catch up to other kids his age. Most importantly, his mom says there was now a sparkle in Teddy’s eyes that had been missing.

But just as Teddy was getting stronger and the follow-up appointments with his doctors less frequent, his parents  noticed that he wasn’t responding to sound the way he used to. After undergoing a hearing test, Teddy was diagnosed with profound bilateral sensory neural hearing loss, which involves both the inner ear and the hearing nerve.

“I was devastated, “says Stephanie. “I was seven months pregnant with our third child when we received the diagnosis, and I just lost it. I felt like there was a death in the family.”

After a brief trial with hearing aids, the Fellingers met with Nancy M. Young, MD, founder and medical director of Lurie Children’s Cochlear Implant Program. A cochlear implant is a device designed to provide hearing to individuals  who have severe-to-profound hearing loss by directly stimulating auditory nerve fibers in the inner ear.

Lurie Children’s has one of the largest and most comprehensive pediatric audiology and cochlear implant programs in the nation, and since 1991 Dr. Young has performed more than 1,200 of the life-transforming implantation surgeries at the hospital. After examining Teddy and reviewing  his hearing test results, Dr. Young determined that Teddy was a candidate for cochlear implantation. In July 2012, Teddy underwent surgery on both ears.

Today, Teddy is an active and energetic little boy who loves to laugh. He’s in a mainstream pre-school class, and is popular with his classmates. Most importantly, Stephanie says Teddy’s hearing is “better than my own.”

Many families struggle to understand and cope with a child’s  hearing loss. To address those needs, Lurie Children’s cochlear implant team includes a social worker and an education coordinator – positions that are both made possible by philanthropic support from the Foundation for Hearing and Speech Rehabilitation, an affiliated organization of Lurie Children’s.

Cochlear implant program social worker Anne Murphy meets with the families of patients  who are newly diagnosed with hearing loss, scheduled for cochlear implantation or those who have already undergone the surgery.  Because a child’s hearing loss can result in a broad and complex range of issues, Anne conducts a detailed psychosocial assessment of each family. This information helps her provide the best support and resources for them. For Teddy’s mom, Anne’s assistance was invaluable.

 “Anne was like a calm in the storm,” says Stephanie. “Right from the start she explained that, while this diagnosis is devastating, there was a plan in place for Teddy. She gave us hope, and reassured us that Teddy would be fine. And he is!”

Watch a video of Teddy from the 2013 Eric & Kathy Radiothon for Lurie Children’s.

This article originally appeared in the October 2013 issue of Heroes Update​.