Genetics

A Journey to Hearing: The Power of Family

February 27, 2025

A family's story of navigating hearing loss together

By: Regeneron Editorial

When a child is born with hearing loss, figuring out a path forward can be daunting and have an impact on the entire family. Congenital deafness, or hearing loss present at birth, affects approximately 1.7 out of every 1,000 children born in the U.S. and approximately half of these cases have genetic causes.1,2 Early diagnosis and intervention are crucial, which involve much more than a standard hearing test. In some cases, comprehensive diagnostics, including genetic testing, are also important to understanding the full picture.

Following diagnosis, interventions as well as ongoing language development – may it be listening and spoken language and/or sign language – are essential since 80% of language skills are developed by age three.3 Since 90-95% of all babies born deaf have hearing parents, most of them naturally want their children to be able to hear and speak (and sign in some cases) to maximize language development.4 Recent advancements offer potential in addressing certain genetic forms of hearing loss and continued research is critical to driving more options for children living with hearing loss and their families.

Chris Campbell and his wife, Claire, who sadly passed away a couple of years ago, learned to adapt to a new reality after two of their children were born with profound hearing loss. Alice and Ollie have auditory neuropathy spectrum disorder (ANSD) due to a rare genetic condition that causes issues transmitting sound from the inner ear to the brain. The Campbells demonstrate the power of resilience as they navigate the unique challenges associated with ANSD. Together, through patience and determination, and with the help of medical advances in hearing loss, the Campbells, including their hearing son/brother, Joe, have learned to thrive.

The Campbell family’s journey with ANSD started when Alice was one year old. Chris and Claire noticed inconsistencies with Alice’s hearing even though she passed her newborn hearing screening test. The most common newborn screening test is the otoacoustic emissions (OAE) test that only tests the inner ear – not whether sound can travel from the inner ear to the brain, which requires an Auditory Brainstem Response (ABR) test to confirm. They sought out further testing, including the ABR test, with a specialist and soon learned about Alice’s ANSD. They also had genetic testing performed that determined the cause of Alice’s genetic form of hearing loss. After learning about the available treatments, the family decided that Alice would receive a cochlear implant. While a cochlear implant was the best option for Alice at that time, research across genetic therapies to address hearing loss has made considerable advancements since then, in the hope of discovering potential treatment options for future generations living with hearing loss.

Chris Campbell,
father

Chris took a year off from work to partner with Claire ensuring Alice had the best possible outcome post-surgery. He drove three hours several times a week to attend intense training sessions to help her learn to hear and speak. It was a difficult process, one that Chris would repeat with his youngest son, Ollie, and a testament to Chris’ unwavering support for his children. “I would have done and given anything to Alice and Ollie for them not to have gone through some of the challenges and limitations that we know exist with their hearing.”

Alice Campbell,
daughter

Around the time Alice turned two, about a year after she received her cochlear implant and attended auditory verbal training sessions with her dad, she began showing significant improvement in her hearing and speech. As time progressed, she would continue to refine her listening and speaking skills. “I’ve had to learn how to speak, I’ve had to learn how to hear in everyday conversations and make sure I’m picking up on the important bits. I’ve always found that slightly harder than other people.”

Ollie Campbell,
son

From a young age, Ollie recognized the challenges posed by hearing loss and was dedicated to improving his communication by focusing intently on his listening and speaking skills. Despite initial challenges, Ollie has maintained an incredibly positive attitude and is very optimistic about the possibility of future treatments for people with conditions like ANSD, including advancements in gene therapies. “I think it is a really, really positive thing to do, researching about more ways to provide solutions to hearing loss.”

Joe Campbell,
eldest son

Joe, the family’s oldest child, has been a beacon of support and a terrific coach to his younger siblings. While he himself can hear, he has seen firsthand the impact it has on a family. He recognizes the role his parents have played for his siblings, saying the “help my mom and dad have given Alice and Ollie [has just been] extraordinary. It was all so new to them.”

Paul Sommer, Senior Director of
Patient Experience & Advocacy
at Regeneron

At Regeneron, we understand the impact hearing loss has on individuals and their loved ones and are proud of our progress toward advancing research to provide innovative options for people living with hearing loss.

Paul Sommer was born with profound hearing loss and is a fierce advocate and member of the deaf community. As part of his role, Paul works to ensure our research is human-centric and grounded in the families’ needs and options. “At Regeneron, we value insights gleaned directly from the lived experiences of the people we serve, and we apply those learnings from families like the Campbells to drive our research and development efforts. We extend our deepest gratitude to the Campbell family for sharing their inspiring story.”

Learn more about genetic hearing loss

References

  1. Centers for Disease Control and Prevention. (2022). 2022 Summary of National CDC EHDI Data. https://www.cdc.gov/ncbddd/hearingloss/2022-data/01-data-summary.html.
  2. National Institutes of Health. (2023). Genetic Hearing Loss. https://www.ncbi.nlm.nih.gov/books/NBK580517/.
  3. American Speech-Language-Hearing Association. (Accessed 2/14/25). What To Expect: Your Child’s Communication Development. https://www.asha.org/about/press-room/articles/what-to-expect-your-childs-communication-development/.
  4. Ross E. Mitchell, Michael A. Karchmer. (2004). Chasing the Mythical Ten Percent: Parental Hearing Status of Deaf and Hard of Hearing Students in the United States. https://muse.jhu.edu/article/51652.