Where have the children gone?

It appears to be a simple question. 

How many children have hearing loss? 

The answer doesn’t seem to be easy and/or agreed upon.  It seems the answer is only as good as the agency you ask or the study you read.

It took years to be able to convince the public that screening newborn babies for hearing loss was important.  The great pediatric audiologist, Marion Downs, knew it long before anyone else and her persistence, dedication, and commitment to pass newborn hearing screenings was unwavering.  She even had to convince her colleagues the importance of early intervention and that amplification at the youngest age possibly provided the best outcomes.  Thanks to her, approximately 98% of babies are screened in hospitals before being discharged to go home according to the Centers of Disease Control and Prevention (CDC). She is known as the “Mother of Pediatric Audiology” for good reason.

According to Dr. John C. Carey, M.D., professor of pediatrics at the University of Utah Health and Primary Children’s Hospital, one out of every 500 babies are born with hearing loss. Hearing loss accounts for the second most common birth defect except for heart defects.

It is important to keep in mind the screening protocols used for newborns can, and often do, miss a mild hearing loss in an infant. The equipment screens at a level equivalent to 35dBHL which is considered to be a mild hearing loss.  The numbers reflected in the data may not actually flag all children with hearing loss. 

After Congress reauthorized The Individuals with Disabilities Education Act (IDEA) it became a law making a free and appropriate public education available to eligible children with disabilities throughout the nation and ensures special education and related services to those children. Under this federal law, public schools must look for, find, and evaluate kids who need special Education.  This is called Child Find and it covers kids from birth through age 21.  Early intervention teams (birth to age 3) is called Part B and 3-21 years is called Part C.

This is a big task for even small school districts to accomplish well.  Whereas school hearing screenings are performed in some areas of the country, most states do not mandate these screenings and they are not standardized and/or monitored.

Children found to have a disability are categorized under Child Find’s 13 disability groups. Deafness and Hearing Impairment are listed as a “low incidence” disability.  A low incidence disability, according to Child Find, is less than one percent of the school population.  Hearing loss, according to IDEA, refers to a disability that occurs rarely or in low numbers.

At this point, it is unclear how the second most common birth defect just became a novel disability in the school system.

It should be noted the CDC states research to support the prevalence of hearing loss in school-aged children to be approximately 14.9%.  A research review of childhood prevalence of hearing loss in schools from 1975 to 2020 showed the lowest prevalence reported in Ear & Hearing by Fred Bess et al. at 11.3% of 3rd, 6th and 9th graders in 1998 to the highest percentage in a JAMA, cross sectional analysis of US demographic and audiometric data showing the 2005-06 at 19.5%. 

To understand the prevalence of hearing loss in school-aged children, this author determined it depends on which data you chose to believe.  To recap:

1.      Hearing loss is the second most common birth defect affecting one baby per 500 born;

2.      Newborn hearing screenings can miss a mild hearing loss so the numbers could be greater than 1 per 500;

3.       School hearing screenings are not mandated in most states and therefore, many children missed at birth and/or those who developed a hearing loss in childhood may be missed;

4.      IDEA postulates that hearing loss is a low incidence disability affecting less than one percent of the children in schools;

5.      Research conducted from 1975 to 2020 show different statistics of the prevalence of school-aged hearing loss ranging from 11.3% to 19.5%;

6.      The CDC refers to a 1998 study showing prevalence in 6-19 year-olds of 14.9%.

The only thing for certain is the numbers don’t add up. With an unprecedented number of children at risk for reading and scores plummeting, it might be time to understand what the real prevalence of hearing loss is.