From world of silence to high-tech hearing
Tuesday, May 20, 2008
By Tiffani Hill-Patterson
The Huntsville Times
Complete silence. Can you imagine? Turn off the television. You probably can still hear the refrigerator hum in the kitchen.
Insert earplugs. You can still hear your own breathing.
But for 12,000 children born deaf each year in the United States, there are no lullabies, no birds singing, no comfort from mommy’s voice.
Silence was the world of our daughter, Riley, until she was nearly 2 years old.
We had suspected something for a couple of months, but we preferred to embrace denial.
How could anything be wrong with our sweet baby? Family and friends said there was no way she could be deaf. She turned her head toward us, she responded appropriately, and she babbled.
She was so good at feeling vibrations and reading our faces that she had all of us fooled.
May 7, 2003, changed our lives.
Grief, guilt and anger
“She’s never heard your voices. She doesn’t even know her name.”
The audiologist’s words knocked the wind out of us. We were devastated and in shock. Even though we had concerns, we weren’t ready for the diagnosis. Our perfect little girl was deaf – severe to profound hearing loss.
Our hearts were crushed. It was like the child we thought was ours didn’t exist.
Grief hit us hard. All the songs we had sung, all the “I love yous” we had whispered – she had heard none of them. That was the hardest thing to take. Did she even know we loved her?
Then came the guilt. How could we not know that our child was deaf? We knew people wondered that about us, and some even said it out loud. We just didn’t know. How could this have happened? No one in our family was deaf. Was it something I had done while I was pregnant? Had we done something wrong after she was born? Why had we waited so long?
The anger was next. Why had the nurses dismissed the second failed hearing test so easily? Why hadn’t her pediatrician noticed anything? C’mon! A little help here, please?
Finally acceptance came. We channeled our guilt and anger into providing Riley whatever she needed to hear and communicate. We set up appointments with a geneticist, an Auditory-Verbal speech therapist, an Early Intervention specialist, our insurance representative and an ENT surgeon. The time for tears was over. We looked ahead to Riley’s future with our chins up and shoulders squared.
Two weeks after her diagnosis, Riley was fitted with high-powered digital hearing aids, and she started A-V therapy, which teaches children to listen and talk.
We also met with a geneticist at the University of Alabama at Birmingham, who told us after testing that Riley’s hearing loss was caused by the Connexin 26 gene. Both my husband and I carry mutations of the recessive gene. Finding out the cause was a relief, and knowing it wasn’t our fault freed us from a lot of our guilt.
After seeing that the hearing aids were not powerful enough, we began the process of getting a cochlear implant. On Sept. 16, 2003, Dr. Audie Woolley at Children’s Hospital in Birmingham did the surgery. On Oct. 9, 2003, our little girl heard our voices for the first time.
I wish you could see the video: She turned bright red, looked around, found us and started clapping and laughing. It was the most amazing thing I’ve ever witnessed.
Five years later, Riley has two cochlear implants and is about to finish kindergarten. She understands almost everything, and her language skills are catching up with normal-hearing peers. She plays soccer and softball, loves playing with other kids and loves to read.
Our daughter is a normal 6-year-old – she just has some colorful ear accessories.
Tiffani Hill-Patterson is a Times copy editor. Reach her at tiffani.patterson@ htimes.com.
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