As a parent of two children, Ethan and Gavin, both born profoundly deaf, I know firsthand how crucial newborn hearing screening is to a child’s future. Professionally, as the EHDI Coordinator for the New Jersey Department of Health and a former special education teacher, I also understand its importance from a public health perspective.
This simple, non-invasive test can make a lifetime of difference. Early identification of hearing loss sets the foundation for a child’s language, communication, and cognitive development. The EHDI system works to ensure that every child diagnosed with hearing loss is connected to services that meet their individual communication needs (Joint Committee on Infant Hearing, 2019). Since New Jersey fully implemented universal newborn hearing screening in 2002, 98% of babies now receive this life-changing test, helping families like mine and countless others give their children the strongest possible start (www.cdc.gov/hearing-loss-children/ data/ehdi-data.html).
Delayed Diagnosis
My story, starting with my oldest son Ethan’s diagnosis, began in January 2002, before he was even one month old. At the time, my husband and I were living in the Dominican Republic where newborn hearing screening laws had not yet been implemented. Still, I sensed early on that Ethan might have hearing loss. When he was just 29 days old, I called our pediatrician to share my concern, but it was dismissed. At his next check-up, I was again told not to worry. Desperate for answers, I even tried banging pots and pans behind him. While he seemed to respond, I later learned that it was likely due to the vibrations, rather than sound. Living in a noisy city, his lack of reaction was deeply concerning. This experience taught me my first lesson as a parent: trust your instincts. Finally, after months of worry and frustration, we took Ethan to be evaluated in Florida when he was 10 months old. He was diagnosed with a profound bilateral sensorineural hearing loss.
As a hearing parent without prior experience with pediatric hearing loss, I was completely overwhelmed. I remember being told that many children with hearing loss were not diagnosed until age two or older. Looking back, it makes sense. Over 90% of children with hearing loss are born to hearing parents (National Institute on Deafness and Other Communication Disorders). We never expected our child to be deaf, so it was easy to convince ourselves that nothing was wrong.
This delay in diagnosis, is exactly why my passion for the EHDI program goes far beyond my professional responsibilities. Our work is guided by the EHDI 1-3-6 goals. Every child should be screened for hearing loss by one month of age, receive a diagnostic audiologic evaluation by three months and if the child does not pass, be enrolled in early intervention by six months. My goal is not just meeting these targets, but to ensure that every family feels supported, informed, and empowered to make the best communication choices for their child from the very start.
Screening Success: A Tale of Two Sons
Our experience with Ethan shaped every decision we made for our second son Gavin. As a Canadian citizen, I was drawn by its universal health care system, so in 2003 we moved our family to Canada. This decision proved to be a critical factor when Gavin was born in 2004. Unlike Ethan, Gavin was born after the implementation of newborn screening laws in Canada in 2003. He immediately received newborn hearing screening. When he did not pass, he was quickly referred for follow-up testing and was diagnosed with profound sensorineural hearing loss in both ears before he was three months old. An outcome that aligns with the American EHDI goal.
The difference between our children’s experiences was striking: 10 months of uncertainty with Ethan versus timely diagnosis and immediate access to intervention for Gavin. The relief of knowing exactly what we were dealing with, and having a clear path forward was immeasurable. Importantly for me, it highlighted the profound, positive impact of timely universal newborn hearing screening.
Even with this seamless process, Gavin’s diagnosis was still shocking. It also revealed a challenge that continues today: how results are communicated to parents. Despite efforts to adequately train screeners, some with the best intentions often try to soften referral results. I experienced this firsthand when I was told Gavin’s initial screen was “probably nothing to worry about,” without knowing I had another child with profound hearing loss. While most infants who fail screening do not ultimately have hearing loss, screeners often soften the “refer” result due to technical concerns, such as environmental noise or probe fit, or simply feeling unequipped to answer parent questions. But minimizing referral results can delay urgent follow-up testing and interventions.
Barriers to Timely Follow-Up
For parents, the challenges extend well beyond medical information. The parents often face anxiety, denial, and grief, making it difficult to confront the possibility of their child having a hearing loss. Families often encounter insurance hurdles, transportation challenges, or limited ability to take time off work. When these factors combined with vague or softened guidance, delays in follow-up are common. Clear, honest communication is essential, because the only way to know for sure is through timely diagnostic testing.
A Measurable Impact
The difference in the diagnosis timelines for Ethan and Gavin had a measurable impact on their development intervention and language outcomes. After consulting specialists, we chose cochlear implants for both our sons. Gavin, diagnosed early, received his first implant at eight months; Ethan, who was diagnosed later, received his first implant at 13 months. Their second implants followed a similar pattern: Gavin at 18 months, Ethan at five years. Those early months created a lasting gap that meant Ethan had to work significantly harder to catch up. Gavin’s language skills caught up to peers by age three; Ethan’s by age seven. The delay required additional therapy, time, money, and emotional investment. Their outcomes illustrate why meeting the EHDI 1-3-6 goals is so critical. Early identification and intervention give every child the best chance to develop language and communication skills successfully.
Ongoing Support Builds Success
The early years were critical in building a strong foundation and setting up Ethan and Gavin for success. Both were later diagnosed with Usher syndrome, a genetic disorder that includes progressive vision loss, and balance challenges. While we are happy with the early communication choices, the path to long-term success also requires ongoing support. Both Ethan and Gavin received essential services throughout their school years, that included Individual Education Plans, ongoing support from teachers of the deaf, and the daily use of assistive listening devices (personal FM systems) to ensure full access to classroom instruction.
Never Too Soon : Early Hearing Detection and Intervention Resources
NJ EHDI Program
www.nj.gov/health/fhs/nbs/ehdi
National Beacon Center
https://beaconforehdi.org
The National Center for Hearing Assessment and Management
www.infanthearing.org
CDC Hearing Loss in Children
www.cdc.gov/hearing-loss-children/index.html
National Institute on Deafness and Other Communication Disorders
www.nidcd.nih.gov
Hands and Voices
www.handsandvoices.org
Rochester Institute of Technology
www.rit.edu
Rochester Institute of Technology
National Technical Institute for the Deaf
www.rit.edu/ntid
EP Magazine December 2019
Advocating as a Family by Pamela Aasen
https://reader.mediawiremobile.com/epmagazine/issues/205614/viewer?page=24
EP Magazine January 2025
Conversations About a Diagnosis by Pamela Aasen
https://reader.mediawiremobile.com/epmagazine/issues/209167/viewer?page=36
EP Magazine articles written by the author’s sons:
EP Magazine April 2024
An Uncomfortable Life by Ethan Morrobel
https://reader.mediawiremobile.com/epmagazine/issues/208904/viewer?page=38
EP Magazine July 2024
Speaking Up by Gavin Morrobel
https://reader.mediawiremobile.com/epmagazine/issues/209001/viewer?page=34
These consistent accommodations were key to their success in graduating from high school with high honors. Today, Ethan and Gavin are cross-registered students at the Rochester Institute of Technology (RIT) and the National Technical Institute for the Deaf (NTID) in Rochester, NY. They continue to independently advocate for accommodations through the Office of Disability Services at both institutions. Their success reflects the lasting impact of early diagnosis, timely intervention, and ongoing support.
ABOUT THE AUTHOR:
Pamela Aasen has served as the Early Hearing Detection and Intervention (EHDI) Program Coordinator for the New Jersey Department of Health since January 2023. Prior to this role, she was the EHDI Project Director for the Statewide Parent Advocacy Network (SPAN) for five years. She has worked professionally within the Deaf, Hard of Hearing, and Deafblind communities since 2017, following 25 years as a special education teacher across the U.S., Canada, and the Dominican Republic. As the mother of two young adult sons with Usher syndrome, Pam is a dedicated advocate who volunteers with Usher syndrome organizations and serves on the Board of the National Technical Institute for the Deaf Foundation at the Rochester Institute of Technology. She is also the 2020 recipient of the EHDI National Family Leadership Award.
Read the article here.