The Charlotte Observer
South Charlotte News
Wednesday, February 22, 2012
Bill and Mary Beth Goodwin, residents of the Berwick neighborhood in Ballantyne, have two children who were born deaf and have recovered hearing through cochlear implants.
When asking about their first child, 9-year-old Emma, Bill said, “It caught us by surprise.”
Both parents said there were signs that something was not right, such as not talking and not walking until she was 19 months, but she passed her hearing test at Presbyterian Hospital two days after her birth on Dec. 8, 2002.
And when their concerns were mentioned to the pediatrician, because she passed that hearing test and was achieving other milestones, it was determined that nothing was wrong.
Even after the family moved to Minneapolis in 2004, neither the school district nor the pediatrician’s office could find a problem.
The Goodwins believe Emma had become aware of their body language and actions, using that to determine what they were saying or asking her, because she would respond accordingly.
Finally, evidence of her issues where revealed in July 2004. Emma was in a day-care setting, her back was turned to the teachers and she wasn’t responding. One of the workers went up behind her with two pots, banged them against each other loudly and she didn’t flinch.
After a month of testing at the Children’s Hospital in Minneapolis, it was determined through the use of an Auditory Brain Stem Response (ADR) that Emma was deaf.
Mary Beth Goodwin said she clearly remembers the audiologist saying, “Your daughter’s hearing loss is profound. … There are great deaf schools out there. Learn sign language.”
And she started crying hysterically. It was a complete shock.
“The child that you thought you had, you don’t have. You have to grieve the child you thought you had, to enjoy the one you’ve got,” Mary Beth said.
Bill said, “Emma would have to learn sign language, go to special schools. It’s like someone comes up behind you and knocks you out. You have to change your whole way of thinking. If we have to send her to special schools, how can we afford it?”
The Goodwins wanted to know the options available for their daughter, who was 21 months at the time. That is when they found out about cochlear implants and Dr. Paul Bauer, a well known ear, nose and throat surgeon in Dallas who was working wonders with cochlear implants. Mary Beth was working as a textile designer for Target in Minneapolis at the time, but she was able to find another job in her field in Dallas.
“At that point, I thought, we have a child with a disability, we have to do what’s best for her,” Mary Beth said. They moved to Dallas in October 2004.
By May 2005, Bauer performed the first cochlear implant surgery on 2-year-old Emma’s right ear. She received the second implant in her left ear Nov. 1, 2007.
“A normal hearing child starts hearing in the womb and starts putting words together. The first time she could hear was June 2005 (when the implantation was activated),” Bill said.
After many hours of speech therapy at the Callier Center at the University of Texas-Dallas, attending the Hearing School of the Southwest and the Goodwins working with Emma at home, things slowly turned around.
But to this day, six and a half years later, they continue to fine-tune her conversation skills.
In 2004, after Emma’s ADR test confirmed she was deaf; the Goodwins learned Emma’s deafness was caused by Connexin 26, a genetic disorder they both carried recessively.
“It was comforting to a certain extent, but you blame yourself,” Mary Beth said.
Harrison was born in Dallas on Oct. 26, 2008, while Emma was being mainstreamed into kindergarten. Bill, who freelances in TV production, said it was a one in four chance for Emma to be born deaf and a 17 percent chance their son would be born deaf.
Even Bauer was surprised when Harrison was pronounced deaf within days of his birth.
Fortunately, it was detected sooner this time. And his first implant was in his left ear within a week of his first birthday. Harrison’s second cochlear implant was at age 2.
Now both children are doing great. Emma is performing very well in third grade at Endhaven Elementary, and both receive support from Beginnings (www.ncbegin.org), a nonprofit agency that advocates for deaf and hard-of-hearing children from birth to 22 years old.
Through the experience, the Goodwins feel fortunate for the support they’ve received.
“The most important thing now is trying to let them be a 3- and 9-year-old,” Mary Beth said. “It’s all about achieving balance.”