Two-and-a-half-year-old Emma Wickman helped her parents make the decision about whether she should have a second cochlear implant.
When her parents sat on either side of her and carried on a conversation, "she would take her left implant off and try to put it on her right," her mother, Kellie Wickman, Minot, said.
Emma, who was born deaf, is so social that it bothered her not to hear all parts of the conversation with both ears. She received her first cochlear implant on her left ear at age 14 months. She had surgery at Mayo Clinic in Rochester, Minn., a few months ago to have a second cochlear implant on her right ear. It is working beautifully and Emma's language skills are on track for her age.
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Submitted Photo - - Emma Wickman, 2-1/2, was born deaf but is developmentally on target thanks to early intervention. Her mother, Kellie Wickman, said newborn hearing screenings are important.
But Wickman said the choice she and husband, Ben, made for their daughter isn't the only one that a parent of a deaf child can make.
"What works for your child is what makes the choice right," Kellie Wickman said.
Hands & Voices
Kellie Wickman and other parents of deaf and hard of hearing children in the state are starting Hands & Voices, an organization that will serve as a resource to parents with a deaf or hard of hearing child.
"Hands & Voices is dedicated to supporting families with children who are deaf or hard of hearing without a bias toward communication modes or methodology," Wickman said. "We're a parent-driven, non-profit organization providing families with the resources, networks, and information they need to improve communication access and educational outcomes for their children. Our outreach activities, parent / professional collaboration, and advocacy efforts are focused on enabling deaf and hard-of-hearing children to reach their highest potential."
They hope the organization will help provide a place for parents to ask questions of other parents and will help point them in the direction of the available resources in North Dakota for deaf and hard of hearing children.
Wickman said it can seem overwhelming, especially when parents first hear the diagnosis, and parents go through a grieving process.
Early intervention is important for the best possible outcome, said Wickman, who said parents should make sure to get follow-up testing if a baby fails the newborn hearing screening at the hospital. If they had not taken the results seriously, she said, it might have taken them months or even a year to realize that Emma was not hearing and that could have negatively affected her language development.
North Dakota's Early Hearing Detection and Intervention program is voluntary, unlike some other states. According to statistics, only 13 cases of hearing loss were reported in infants born in the state in 2009, though national statistics suggest that the real number of deaf or hard of hearing children born in the state that year was actually between 30 and 40. That suggests that two-thirds of children who are deaf or hard of hearing were not receiving early intervention that will help them develop language skills.
Grant funding
The North Dakota Center for Persons with Disabilities, a University Center of Excellence at Minot State University, recently received $300,000 per year for three years from the U.S. Health Resources Services Administration to continue the operation of the North Dakota Early Hearing Detection and Intervention program.
The program promotes timely infant hearing screenings, diagnosis, early intervention services and family support through training, technical assistance, site visits and public-awareness activities.
Emma, who was born in Trinity Hospital in Minot, failed her newborn hearing screening in the hospital before her parents took her home. She failed two follow-up hearing tests in the next month. By the time she was 2 months old, doctors at Mayo Clinic confirmed that Emma had auditory neuropathy in her left ear and severe sensorineural loss in her right.
Kellie Wickman had grown up with some friends who were deaf and had learned some sign language as a child, but she said her skills were rusty. Both she and her husband began taking classes in American Sign Language and began signing to Emma when she was 2 months old.
"Emma seemed a natural at sign language and was so attentive to us," Wickman said.
Emma was fitted for her first hearing aids when she was 4 months old and was enrolled in the Parent Infant Program and the North Dakota School for the Deaf Parent outreach program.
Her parents made the final decision that she should receive a cochlear implant when she was 10 months old. While they didn't see anything wrong with Emma being deaf, they saw that she was a sociable, outgoing little girl and felt that she would have more communication options with hearing as well as deaf people if she received the implant.
"We still view Emma as deaf," her mother said.
The Wickmans said they wish there was more access to the deaf community in this area and would like Emma to know other deaf and hard of hearing children as well as hearing children.
Emma still has some difficulty distinguishing certain similar sounds, such as "sour" and "shower" or "draw" and "straw," so her parents will sign the word to her while speaking it to help her understand what they are saying. Other members of her family have also taken some sign language classes, including her adult brother and his wife and Emma's grandmother.
Emma can hear nothing when she takes off the implants, as she sometimes chooses to. The cochlear implants enable her to hear sound via an electrical impulse, not naturally. Because it is electrical, Emma can find it exhausting, especially when she is in a place with a lot of noise.
Parents of older children have warned the Wickmans that Emma might some day also choose to take her implants off when she no longer feels like listening to her parents.
"That's coming," said Kellie Wickman, who said her little girl is a "spitfire," filled with personality and is developmentally right on target.