Sunday, August 29, 2010

Parent Profile: Rebecca

It's the end of August already and finally time for the first BTaC featured parent.  I first started corresponding with Rebecca when her daughter, K, was newly diagnosed.  She has agreed to be my first feature!  Rebecca has two daughters, K who just turned six and L who just turned four.  L is a typically hearing child.

Rebecca's Story

K's hearing loss was discovered at her five-year-old hearing screening almost one year ago. However, we had been through earlier hearing loss scares. She was born prematurely at 35 weeks via emergency c-section because of complications discovered late in my pregnancy. She was in the NICU for a week and failed her newborn hearing screening. She failed a second hearing screening a couple of weeks later, but she passed an auditory brainstem response test when she was two-months-old.

Then she failed an otoacoustic emissions test at nine months at which time we discovered she had a conductive loss due to fluid. She had tubes placed at 14 months, and then passed another ABR and a behavioral test when she was 15 months old. Her language exploded after the tubes were placed, and I really didn't worry about her hearing anymore.

She passed her four-year-old hearing screening also. So it was a shock (and a huge kick in the gut) to learn of her hearing loss at the age of five. Her ENT and her audiologist don't know if the loss was just missed when she was a baby/toddler, or if it has developed over time. Thus far, no cause has been found for her hearing loss. Fortunately, it seems to have stayed stable and in the mild range for the last year.

K wears two Phonak Micro Nios III hearing aids with an open-fit ear dome. She got her first aid in January and her second aid in June. We held off on getting her second aid because her left ear tested normally twice within the last year on the tones, however, our current audiologist thinks that was just bad testing. She loves her aids (they are pale pink), and they have brought her pure tone thresholds and her speech recognition thresholds into the normal range.

Initially, K was diagnosed with a mild unilateral hearing loss, so I was on the fence about aiding her. However, once a bilateral loss was suspected, I wanted to aid her immediately, especially as she seemed to struggle due to some conductive loss from colds and ear infections on top of her sensorineural loss.

My husband was initially opposed to aiding her because he did not think a mild unilateral loss was that big of a deal. He was also worried that she would be teased by other children and stared at by adults. However, I wanted to make sure she could hear as well as possible given the current hearing technology.

And I'm so glad we did aid her. Our audiologist thinks that K is one of those kids who could probably do fine or even well if we had not discovered her loss because it is mild and she compensates for it very well. I don't know if that's true, but I do know that having aids makes it so much easier for her. And while she developed language normally and on time, I want her to hear every sound to keep that language and speech development going full speed ahead. I also wanted to aid her so that she would get used to wearing hearing aids early in life, especially if her loss progresses.

Fortunately, no child has teased her as a far as I know, and when they ask about her aids, she just tells them they help her hear better - just the simple facts. Her social calendar is very full, and I'm thrilled to report that she did great in kindergarten and is reading well above grade level.

This year has been such a learning experience for me. While I wish I didn't have to learn all of the stuff I have learned about hearing loss and advocating for my child, I feel much more confident about my ability to handle this situation now than I did even a few months ago. I have met several children and adults whose hearing loss is much worse than K, and they're doing great with either their hearing aids or their cochlear implants. I have also met some signing Deaf adults who are leading very happy, productive lives.

K loves to meet kids who wear hearing aids or cochlear implants. Should she lose all of her hearing, I'm certain we would go the cochlear implant route because she has grown up in a hearing world and loves sound.

The hardest thing for me to handle is the uncertainty of the situation. I'm a planner, and it's hard to plan for hearing loss when you don't know if it will progress or not. So, I'm trying to take it one day at a time, one appointment at a time. It's tough, but I'm getting better at it.

Thanks so much Rebecca!  And good luck to K starting first grade!  If you are interested in being a featured parent or have a personal experience with growing up deaf or hard of hearing, please email me at bigteethclouds at gmail dot com.

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