Ohio Academy of Audiology

- Casey's Story

In old age, we expect some age-related hearing loss. But, a healthy newborn with high APGAR scores and no family history of early hearing loss is not expected to have a hearing loss. We found out that this is not necessarily true.

Casey Rose Choson King was born January 30, 2000. She was the second child, but first girl, in our rather active family. Both my husband and I are professionals and we felt that this little angel really completed our family perfectly. At an early age she was taking everything in, wide-eyed and observant. She also slept very well, almost too well. This visual child slept in a converted sitting room in our very small cape-cod house. No noise seemed to rouse her when she was tired.

When Casey was about 10 months old, we started to suspect a problem. This very bright child who completed puzzles would not answer to her name. Also, she started to have recurring ear infections. Around Christmas of 2000, we mentioned this to my mother, a registered nurse and college professor in health education, who confided that she noticed something was “off” with Casey’s hearing. An early hearing test to address the ear infections showed fluid behind the eardrum. This early hearing test at the local children’s hospital showed that Casey had about a 40 db loss, probably a conductive loss attributable to the fluid in her ears. Tubes were inserted and the ear infections ceased. A recheck at the local speech and hearing center also showed a 40 db loss after the tubes were in for about 2 months. Finally, in August of 2001 we convinced our pediatrician that a sedated ABR had to be completed. We felt that something major was wrong. This child was just too bright to not pick up her name if sound was stimulating the auditory nerve.

Long story short, Casey’s sedated ABR showed a severe to profound bilateral hearing loss on September 12, 2001. It is what Tom and I expected and even with the tragedy of September 11 fresh in our minds, our own little tragedy was really humbling. We were feeling just a little sad on the way home. About half way home on a one hour drive, my husband turned to me and set the stage for what we are finding is our family’s audiological journey. He said, “You know she is no different. We just understand her a little better now.” Known for his calm demeanor, he once again talked the family off the ledge!! He was correct, Casey had unbelievable innate capabilities (we knew this even at 18 months) but we had to get her connected to the correct people. By the next day, we were in contact with A. G. Bell School, part of the Columbus Hearing Impaired Program. She is currently in kindergarten at 4-1/2 at A. G. Bell and we expect that she will be mainstreamed into our home school district within a year or two. Amazingly, this child has stayed a grade ahead of her peers and is now pre-reading. Knowing that the literacy piece is paramount to her success, we are thrilled that she loves books. Casey is just starting her journey, but confirming her hearing impairment was no small task. Her innate intelligence fooled two audiologists who tested her through behavioral tests only. Knowing how important the formative years are to overall development, those first 18 months really are crucial.

As you could guess, we could even more in-depthly detail every piece of Casey’s journey, but there are a few points that we feel are pertinent from her early experience that audiologists could influence for the better:

• Educate parents to the benefits of newborn hearing screenings. Suggest that parents should request a hearing screening at birth if it is not state mandated. (The state of Ohio passed legislation requiring the testing of all newborns in September of 2002). Also, tell parents to request a clear explanation of the screening/assessment.
• Educate pediatricians to the benefits of early hearing loss detection. Even a minor loss can negatively effect the child’s development.
• Develop a team relationship between the audiologist, the parents, and any other pediatric doctors involved with the child. When a child is healthy, very few specialists are involved and a regular pediatrician is not likely to be the “care-coordinator.” The primary care coordinator will be the child’s parents. Parents new to hearing loss will require guidance.
• If a single audiologist seems to be out smarted by the child (it doesn’t take intelligent children, even young ones, long to figure out the “game” in the booth) use two audiologists to collect unbiased data on the hearing loss and request that some objective measure of hearing being done such as Otoacoustic Emissions or Auditory Brainstem Response Audiometry.
• Once a hearing loss is confirmed, make sure that the parents and pediatrician are receiving information on communication and technology choices, as well as school options. Audiological professionals can point the parents and pediatricians in the right direction for resources.
• Keep audiological assessments as regular as possible to track the loss. This is important for the parents, since getting evaluation results help to get over denial, which is often a big part of finally accepting a hearing loss. (This child looks so normal, so how can my child be imperfect?)

We can only hope that Casey’s experience will help to educate others on the very elusive element of pediatric hearing loss. Early intervention is essential.

(3/2/2005)