Journey to hearing loss diagnosis takes a village

To optimize speech and language development in a child born with hearing loss, the American Academy of Pediatrics recommends that screening, diagnosis, and intervention occur within a one, three- and six-month interval, respectively. Despite the critical importance, it doesn’t always happen. Why?

Members of the Pediatrix Newborn Hearing Screen Program (Pediatrix) team outlined one family’s journey during a poster presentation at the Early Hearing Detection and Intervention (EHDI) Annual Meeting earlier this year. The poster highlighted the many touch points during the process and how communication breakdown can negatively impact families. It took 14 months for Lydia, born with bilateral, profound sensorineural hearing loss, to receive a diagnosis – placing her nearly a year behind the recommended timetable.

“Operating a hearing screen program with people like Brooke who have experienced the journey from newborn hearing screening to diagnosis and intervention if necessary, help make a hearing screen program successful.  Not only are they phenomenal with communicating with parents, but they also heighten overall awareness of the importance of newborn hearing screening and follow-up for baby’s that refer not only to other screeners but also to the hospital staff.” Says Tammy Uehlin, AuD., CCC-A, who authored the poster along with audiologists Amanda Simpson and Julia Balbach.

The Pediatrix team has screened more than 8 million babies since the newborn hearing screen program was launched in 1994, tracking those who do not pass to ensure hearing loss is either ruled out or confirmed. Providing education and support to parents through the screening-to-diagnosis process is foundational to the program.

Lydia’s story

Lydia, the fourth of six children, was born full-term. She had no family history of hearing loss and no risk factors. She received her newborn hearing screen within 48 hours of her birth. “A nurse told me after my daughter did not pass her hearing screen, two times, that it was probably just due to fluid. This false reassurance was the primary reason I did not seek immediate follow-up care and was the beginning of a long journey to receive a bilateral profound sensorineural hearing loss for my daughter.” Said Brooke Johns, Lydia’s Mother.

Over the next fourteen-months, the family navigated a frustrating series of events, including seven touchpoints and two different audiologists. Without clear communication, guidance, and direction, the fear and anxiety that most families feel during the process compounded.

 “This is, unfortunately, not an isolated incident,” said Pediatrix Regional Coordinator, Amanda Simpson, Au.D., CCC-A. “To learn from this family’s experience, we need to increase awareness of communication breakdowns at each critical touchpoint, so that future families may have an easier journey to diagnosis. We never want to hear a parent say, ‘I did not feel any support.” By examining every step of the process – the Pediatrix team hopes that everyone involved in early intervention will ask themselves how they can do better.

Room for improvement

The poster presentation highlights potential areas for improvement, beginning with the initial hearing screen. However, it should not cast a shadow on the great work that hearing health advocates are doing every day. “In many cases, the areas for improvement will help to keep areas of risk top of mind,” said Karen Brennhofer, Au.D., CCC-A, Clinical Manager, Newborn Hearing Screen Program.

Hospitals/hearing screen providers

• Make sure families understand the screening results. An educated parent can be the best advocate for the child.
• Highlight the importance of continued monitoring of hearing health as an essential part of a child’s growth and development.
• Give clear instructions regarding the next steps, including follow-up appointment details and whom to contact with questions.
• Emphasize the importance of the follow-up appointment rather than providing reasons why a baby did not pass.

Medical home/primary care provider

• Verify newborn hearing screen results and assist the family with needed follow-up.
• Assess communication milestones at every appointment as specified by the American Academy of Pediatrics (AAP) Periodic Schedule.
• Refer for follow-up if milestones are not met.
• Refer for follow-up if a child has risk factors for delayed-onset hearing loss or parent expresses concern.

Audiologist/ENT

• Let parents know what to expect before an appointment, including how long the appointment will take and how to prepare.
• Schedule appointments with enough time to complete all needed testing. If a scheduling conflict occurs, prioritize and reschedule it as soon as possible.
• Refer to another provider when appropriate. For example, audiologists not equipped to diagnose pediatric hearing loss should refer the patient to a pediatric audiologist immediately rather than continue to test with inconclusive results.
• Answer the hard questions directly, including implications of the hearing loss, amplification and communication options, and next steps.
• Provide parent support resources.
• Educate, educate, educate. Please make sure the parents understand what you’re telling them.

“The success of the 1-3-6 approach relies on the collaborative work of an entire care team – hearing screen providers, hospitals, parents, audiologists, state EHDI programs, physicians and other advocates,” said Jillian Gerstenberger National Director, Newborn Hearing Screen Program. “It takes a village.”

View the poster presentation or Learn more about the newborn hearing screen program.