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My name is Nancy, and I am the mother of five children. My youngest child, Alex, was born deaf. He has the connexin 26 gene mutation. His hearing loss came as a big surprise since no one else in our immediate family has a hearing loss. However, the hearing loss was evident after several failed hearing screenings. (Thanks to Dr. Karl White for these early-detection screenings!) My husband and I quickly immersed ourselves in learning about hearing loss and the options available.
Daisy Emma was born on March 9, 2011. The c-section was routine, Daisy looked beautiful and she nursed right away. During our five-day hospital stay, Daisy had a newborn hearing screening - she actually had several because she just wasn't passing them. I was assured that it was simply amniotic fluid in her ears and there was nothing to worry about. While we were there, because she had a large fontanel, she also had a head ultrasound and an MRI that revealed some possible cysts or calcifications in her brain. The pediatricians told me that it was likely I had gotten sick during my pregnancy and that it may have caused a hiccup in her development, but that there was nothing to worry about. When Daisy was two weeks old, we had a follow up hearing screening.
As a young, new mother, I was overwhelmed with joy in welcoming to the world, my beautiful little girl, Taimane. She was perfect! Her father and I adored her from the second we laid our eyes on her. Having carried to full term and not experiencing any complications with my labor, we were excited to leave the hospital and take home our precious little girl. A few hours before leaving the hospital, a woman came in the room to tell me that Taimane did not pass her newborn hearing screening, but that I shouldn't be concerned because this happens all the time and can be caused by having some fluid in her ear.
My heart soared today as Makenzie excitedly pulled out her certificate showing me that her short story was one of the few chosen to represent her school in the districts Young Writer's Celebration. Tomorrow she is performing in a musical theater production with some of her 8th grade peers. She has always excelled in school, is on the honor roll, and is acing honors math. She floods me with stories of lunchtime conversations she has had with her friends and is an all-around happy well-rounded girl. Oh how I wish the me now could tell the me from the past that everything would turn out this way. It would have significantly reduced the sleepless nights, the heartache and guilt and the many tears that were shed due to the uncertainty of what the future would hold for my child 16-month old child who was diagnosed with a severe-profound bilateral hearing loss.