After a baby is born, a series of tests are performed to check for any issues or abnormalities. These tests are usually performed shortly after birth. After these tests, most parents are able to take their newborn home. Others are met with challenging diagnoses and troubling test results.
That was the case for Kara Ly and Thomas Scheiding after their son, Pierce, failed the newborn hearing test.
What began as a day of joy and celebration quickly turned into a time of confusion and fear for their baby boy.
One month after Pierce was born, he completed a diagnostic auditory brainstem response test and was diagnosed with severe to profound sensorineural hearing loss in both ears. The unsettling diagnosis left his parents with feelings of anguish, denial and concern. They were worried about his future ability to communicate and learn.
“We were naturally in a stage of denial since no one in either of our families was deaf or had a medical history of such a condition,” Thomas remembers. “Our lack of knowledge about deafness led us to being concerned and scared.”
After many conversations with hearing and speech specialists at Kapiolani Medical Center for Women & Children and other families, they learned to embrace this diagnosis.
Kara and Thomas began to feel hopeful as they stepped up as Pierce’s advocates to provide him with the best possible care and life.
Kara and Thomas faced the tough decision of whether to have Pierce receive cochlear implants to replace his hearing, or have him rely on American Sign Language. Throughout the decision-making process, they were given all the material needed to make an informed choice. Eventually, they decided to have Pierce undergo cochlear implant surgery when he was 1 year old.
Following the surgical procedure, Pierce received speech therapy services on a weekly basis for two years at Kapiolani, where he learned to hear and speak. His compassionate and dedicated care team, including his audiologist, Briana Horgan, and speech language pathologist, Kimi Perez, made sure Pierce was able to continue his weekly sessions uninterrupted throughout the COVID-19 pandemic. Their determination and willingness to support Pierce along his journey have played an important role in his success.
“The feelings of concern and fear are a natural part of receiving news about a life-altering diagnosis,” says Kara. “Learning more about the diagnosis, accepting it and then playing an active role in the recovery process are each essential. For us, talking to others who have previously worked through these steps created a positive feeling that there is light at the end of the tunnel.”
Now 5 years old, Pierce attends school with hearing peers, is learning how to play the piano, playing basketball and has emerged as the most talkative person in his family.
“When you listen to him speak, when you witness him hearing and learning, and when you hear him playing with his friends, you would scarcely know today that he has no natural hearing,” Kara says. “We have learned that if we surround ourselves with the right people, get treated at the right facility, and work with Pierce at home in a way that reinforces the therapy that he received at Kapiolani, we are able to more confidently travel on the path to recovery.”
Portions of the 2023 Wall of Hope photography exhibition were photographed on the grounds of Iolani Palace. Built by King David Kalakaua, Iolani Palace is where his wife, Queen Kapiolani, first envisioned a maternity hospital to provide proper quality care for Hawaiian women and their newborns. Here, she hosted magnificent galas and luau to raise funds for the creation of the Kapiolani Maternity Home, which would eventually become Kapiolani Medical Center for Women & Children. Now, more than a century later, to see these Kapiolani patients – all of whom have overcome some medical adversity – happy and healthy on these very same grounds is, indeed, Queen Kapiolani’s dream come full circle.
Published on: April 17, 2023
