One Family’s Journey:
False Positive Fades to
Emma had a newborn hearing screening in the hospital before we took her home. She failed.
Emma on the tracks
We were told by the nurse who discharged us that we shouldn’t worry about it too much because it was pretty common for false results to come back. She did tell us that we should schedule a recheck with an audiologist in the next couple of weeks.
Two weeks later we had our first ABR. Emma had failed some parts of it and passed others. Confused; we scheduled another one. Two weeks later, she failed her second ABR. We were told to seek a second opinion, so decided to go to Mayo Clinic in Rochester, MN. Four weeks later at Mayo Clinic, it was confirmed that Emma had Auditory Neuropathy in her left ear (which is why she passed some of her testing) and severe sensorineural loss on her right.
We came back home to North Dakota where Emma was fitted for her first hearing aids. She received them when she was four months old. Emma was enrolled in Parent Infant Program and the North Dakota School for the Deaf Parent Outreach Program where she was given a Teacher of the Deaf. What a blessing!
With all the emotions and fright about how we were going to communicate with our daughter, we started signing to her when she was two and half months old. Emma seemed natural at picking up on sign language and was so attentive to us and her surroundings. Keeping her hearing aids on until she got used to them was a challenge, but our outreach provider’s creative solution of having her wear the pilot caps from Hanna Anderssen was a winner. They come in all sizes, and can be tied on to Emma’s head so that she couldn’t pull at her aids. Emma still managed to get hers off sometimes, but we matter-of-factly just put them back on. After about three months of persistence on our part, it wasn’t as big an issue.
Then came the time to make a decision about the possibility of a cochlear implant on her left (auditory neuropathy) ear. It was an agonizing decision as we saw our little girl thriving with her new language (sign), and frankly we saw her as a totally “normal” infant, with the exception that we found ourselves limiting her exposure to the outside world because not everyone was able to sign with her (speak her language). As we watched Emma grow and saw her love and need of interaction with others, we decided to visit with all sorts of people (deaf, hard of hearing, parents, teachers and children) to get a feeling as to what would be best for her. It became obvious. If Emma were to be able to communicate with everyone equally, she would need to have better access to sound.
We made the final decision when Emma was about ten months old and at fourteen months she was implanted in her left ear. It worked beautifully. She hears very well out of her left ear! She can even hear the birds (morning doves) that I was afraid she would never be able to hear.
Emma’s language skills have always been above average, even for a hearing child. Her personality is thriving although I believe strongly that it would have with or without implants. We wish there was a little more access to the deaf community and other deaf and hard of hearing children, because we feel that although she hears remarkably well, at the end of the day when her implant comes off, she is still our beautiful, deaf daughter. We have had a fabulous experience with a signing class we took last year and would love to see a deaf community program develop where anyone who is deaf, hard of hearing or interested in building relationships with us could come.... still in progress!
Emma is scheduled to have her second implant next week. Her right hearing has deteriorated in the last year and she has entered into the profound category. She also has some trouble with localizing sound and we are told this should help with that. She panics when she can't find the source of an unfamiliar sound. The same agonizing decision has plagued us, but this time we were able to make the decision with Emma’s help. We (my husband and I) sat on the couch a few weeks back chatting, Emma was between us. She was taking her left implant off and moving it over trying to get it to stick on her right ear, telling me that she wanted to be able to hear us both, at the same time and same level. She was asking for another implant which helped us to decide. Soon, prior approval was completed and the surgery was set.
We feel incredibly blessed by our little girl, all the people from the early screening process to our amazing outreach people and our deaf and hard of hearing friends we have made. Emma’s success, in part, will always be due to North Dakota’s Early Childhood Screening. Thank you!