Hearing You Loud and Clear: Siena’s Story
By Erica Gadbois
Siena Whipple has a lot to listen to — music, stories and voices of loved ones are just a few of her favorites. And for the 20-month-old and her parents, Shona and David Whipple, the fact that she can hear the world around her is a daily reason to celebrate.
When Siena was born, she didn’t pass the hearing portion of her newborn screening. Nurses said not to worry; she likely just had some fluid buildup in her ears. Before being discharged from the Orange County hospital where she and Shona were staying, she had her hearing tested again. She still didn’t pass. At a two-week checkup, she passed in one ear, but not in the other. At five weeks, Siena had a diagnostic auditory brainstem response test. “She didn’t respond to anything,” Shona recalls, “and then they told us she had severe to profound hearing loss.”
Although the initial news was upsetting for the Whipples, Shona says they adopted the same positive and pragmatic approach she used for her own type 1 diabetes diagnosis as a teen — “either we freak out, or we move on. What are our options?” Shona and David began exhaustively exploring solutions for their little girl, including sign language and cochlear implants (CIs), surgically implanted electronic devices that provide a sense of sound to people who are profoundly deaf or severely hard of hearing. Having made a career out of technology, David naturally gravitated toward CIs, and when the family met with a trusted teacher from Irvine Unified School District to evaluate Siena’s future education options, she, too, highlighted CIs. In fact, she said, a CI information event was coming up right by the Whipples’ home. They would be able to meet kids with CIs and their families, interact with CI technology, and engage with CI and audiology medical professionals.
It was here the Whipples met Elina Kari, M.D., a neuro-otologist and ear, nose and throat physician on the Rady Children’s Hospital-San Diego Cochlear Implant Program team. “She was in the middle of moving her practice from L.A. to San Diego to work at Rady Children’s,” recalls Shona. Then just three months old, Siena still needed to be evaluated for her CI candidacy, but the family felt they had met their provider match. “She had a daughter just a few months older than Siena, she was really warm and intelligent, and we just got the feeling that she understood us,” explains Shona. “After meeting Dr. Kari, we knew that, if possible, we wanted Siena to be in her care for the [CI] surgery.” Following the event, they connected with Dr. Kari to make an appointment once she arrived at Rady Children’s. They also paired up with Rady Children’s audiologist Erin Levy, Au.D., C.C.C.-A., who they had also learned about at the CI seminar. Shona notes that they were encouraged to hear industry experts sing Erin’s praises and state that “if their child was having implants, that’s who they’d want as their audiologist. We said, ‘cool — so how do we see her?’”
Siena began the CI evaluation process with Dr. Kari and her team. Although comprehensive — candidates undergo a multi-step audiological exam, an assessment of communication levels and comprehension based on their age, a developmental inventory, and an educational evaluation to verify the child’s current or future learning environment will support everyday CI use — her parents note everything was very simple and straightforward. She also tried out hearing aids, a common step in determining whether a patient would benefit from CI surgery, but they didn’t work for her. At five months, Siena had an MRI as part of her medical evaluation, the final stage of the CI assessment process. Through this imaging, Dr. Kari was able to get an in-depth look at the structure of Siena’s entire auditory system and provide a definitive verdict on her suitability for CIs. Excitingly, she was an ideal match.
On March 30, 2018, Siena went into surgery for bilateral CIs. Over the course of the procedure, the Whipples received regular updates from their daughter’s care team. “Things ran very smoothly. After the surgery was complete, Dr. Kari met with us and let us know that the surgery was a total success with no issues and no complications,” David recounts. From there, her activation day — when her CIs would be turned on and she would hear for the very first time — was right around the corner on April 23, 2018. Levy worked with them in advance to prepare them for the big day. “Erin was very good at letting us know what her approach would be during the process,” Shona comments. “[She] was also great at setting our expectations … some babies cry, some babies don’t have big reactions, some babies are scared.”
With her parents by her side, Siena took this emotional milestone in stride — and made sure she acknowledged all of the guests in the room with her. “When Erin turned the implants on … we began talking to Siena … she immediately looked to the elephant that she had been looking at for all of the initial sounds and waved!” exclaims Shona. For several appointments afterwards, Erin continued to carefully turn the volume higher and higher on Siena’s CIs, easing her into hearing at the level she does now.
A year later, Siena is well-accustomed to her CIs — or her “ears,” as they’re more affectionately termed in the Whipple household — and is excelling. “She loves to read and be read to, she is picking up words and doing awesome. She talks all the time,” David says. “She has comprehension above her age level, and her speech is only a couple of months behind her peers … even though she didn’t have hearing for the first nine months.” The family continues to see Erin for follow-up visits and “tuning,” along with Christina Dorchinsky, M.S., C.C.C.-S.L.P., a speech-language pathologist at Rady Children’s Oceanside facility. They also work as a group with the same teacher who encouraged them to explore CIs for Siena, who helps ensure Siena continues to hit developmental milestones and has a smooth transition into school in a few years.
As Siena continues to shine, she’ll now be able to hear, day in and day out, how much joy she inspires in those around her.
Published May 2019