The Sound of Silence: When Children Are Born Deaf
When a child is born deaf, it can trigger a whirlwind of worry and options for parents. Two local families share their stories on finding the right solutions for their kids.
Rolan Sundberg of Southfield was only a few days old and already facing an important test – one that would shape his life. The infant was undergoing a newborn hearing test, something that would reveal if he had a hearing impairment.
It's a test that the Michigan Department of Community Health made mandatory in 1997 and is now administered by all state birthing hospitals and centers. The goal is to identify infants who are deaf or hard of hearing as soon as possible, so parents can pursue early intervention for their child and prevent potential speech and language delays.
The importance of this was something that Rolan's mother, Teresa, knew all too well.
She was born with conductive hearing loss in her right ear. She wears a hearing aid when the situation calls for it. She is also an educator for the deaf and hard of hearing, having taught deaf children early in her career. In recent years, she has been working as a teacher consultant in Macomb County. In this role, she works with deaf and hard-of-hearing children, their families and their teachers to assist that child in fulfilling his or her full potential in the classroom.
And so she was well prepared and informed when Rolan didn't pass his hearing test and when the follow-up test with an audiologist confirmed that Rolan, now 7, was born profoundly deaf.
"I'm so glad he was born to me," she says.
Getting a diagnosis and help
According to the Center for Hearing Loss Help, there are four categories of deafness: mild, moderate, severe and profound. It is defined according to the quietest sound, measured in decibels, that an individual can hear. For a profoundly deaf person, the quietest sound he or she can hear would have to be 90 or more decibels.
"That means for Rolan, he wouldn't be able to hear a motorcycle revving its engine right next to him," Sundberg explains. "He would be able to feel it, but he wouldn't be able to hear it."
Sundberg recalls bumping into her mentor soon after learning about Rolan's deafness and taking away some helpful perspective.
"When we ran into each other, the news was still so raw, and I remember talking about options for Rolan with her," she says. "My mentor reminded me that no matter what, I was his mom first. When I would be advocating for him, I needed to do that as his mom, not solely as someone with professional experience in the field."
Within a week after Rolan was born, Sundberg also received a call from a woman with her own deaf child. She was reaching out on behalf of Michigan's Guide By Your Side Program, which pairs families just learning of their child's hearing loss with another family who has a deaf or hard-of-hearing child and who can thus relate to the questions, concerns and options before the family.
Since then, Sundberg has also found support and assistance in the Michigan Chapter of the Alexander Graham (A.G.) Bell Association for the Deaf and Hard of Hearing, of which she currently serves as president. The association was started by Bell himself in 1890 and takes the stance that children with hearing loss can develop the ability to listen and speak if their education begins early and they can make maximum use of their residual hearing. To that end, the association supports the use of listening and spoken language devices.
When Rolan was just 3 weeks old, he was outfitted with hearing aids. By the time he was 13 months, he received a cochlear implant, an electronic device surgically implanted in the ear. According to A Guide to Resources for Family and Providers, published by the Michigan Department of Community Health's Early Hearing Detection and Intervention Program, the implant transmits auditory information directly to the brain, bypassing damaged or absent auditory nerves.
Sundberg still vividly recalls the day her son's implant was activated.
"When the audiologist first turned the implant on and Rolan could hear some initial beeps, he looked up to see where the sound was coming from," she says. "Then the audiologist turned it on, so that he could hear our voices. He looked up at us like 'Wow!' Later he sprinted down the hall, and I called his name. He stopped and turned around. He heard me, and it was incredible."
A different approach
Sundberg's experience is very different from that of Christina Harucki of Royal Oak who was born deaf, married a fourth-generation deaf man and has a hearing son, Lucas, 4, and a daughter, Chloe, 20 months, who is deaf. Harucki is fluent in American Sign Language (ASL), as is her husband and both of her children.
Rather than pursue a technology-based route like cochlear implants, the Haruckis have embraced ASL and active involvement within the deaf community.
"What tends to happen now is that when a child is born with a hearing loss, the parents react with grief and shock, which is common," she explains. "They feel overwhelmed and want to accept a miracle right away, which would be to have their child's hearing back. Of course, the first people they talk to are the medical professionals who often refer them to see an audiologist or an ear, nose and throat (ENT) specialist, who in turn usually recommends cochlear implants on the spot.
"They may not be at fault, but they normally do not have a cultural awareness of deafness and that a deaf culture does exist. Research has proven over and over again that ASL is a visual language that is 100 percent beneficial for all babies, especially the deaf ones," she says. "Unfortunately, the majority of deaf babies are being denied the opportunity to learn ASL due to the fear that it will prevent them from picking up speech, which is almost always the first choice. Parents do not realize that it is OK to learn ASL and develop speech skills at the same time, and that it is even better to do both if capable."
Harucki and her family have found great assistance in another local organization known as DEAF Community Advocacy Network (DEAF C.A.N.!), a nonprofit organization providing casework, advocacy, interpreting and early intervention services to people who are deaf or hard of hearing.
"We are staunch supporters of ASL," says Marcy Colton, DEAF C.A.N.!'s executive director. "We feel that language is critical, whatever the language is."
Colton likes to share the story of a co-worker who is fourth-generation deaf and whose husband is, as well.
"When they had their baby, the audiologist came in to share the results of the baby's hearing test and she made a sad face and mimed a tear coming down her cheek," Colton says. "My friend remembers thinking 'Why is that sad?' Their daughter has had language from the time she was born and is now a successful 18-year-old who is graduating high school with high honors.
"There exists a very vibrant deaf community that does not perceive itself as needing to be fixed. Most deaf children are born to hearing parents. We feel the best thing a parent can do is tell their children they love them and give them their language, their culture and their community."
When cost is an obstacle
Deciding which route to pursue for a child born deaf or hard of hearing is a choice some families do not make in a timely fashion – if at all. Phil Wells is the executive director of the Lions Hearing Center of Michigan, a nonprofit organization based in Detroit that seeks to assist children and adults who are deaf and hard of hearing and who may not have the financial means to secure necessary hearing tests and equipment such as hearing aids.
Wells' organization has a partnership with the audiology program at Wayne State University. Audiologists and ENTs from the university provide services at Oakwood Hospital in Dearborn, including newborn hearing screenings.
"Two years ago, 60 to 70 percent of the families with an infant who did not pass their newborn hearing screening at Oakwood did not go on to pursue follow-up testing," Wells notes. "Since we became involved, that percentage is down to 10 percent."
Wells says his staff now calls every family whose child did not pass the screening to encourage them to pursue a re-check. He notes that sometimes a barrier to families doing so has simply been transportation.
"If that is the case, we provide transportation for the families, so they can bring their child back," he says. "We're making lots of headway."
The Lions Hearing Center also provides services, at no cost, to children in Head Start programs. And for individuals who can benefit from a hearing aid but can't afford one, the Lions Hearing Center can help.
"Hearing aids cost an average of $2,000 per ear," Wells notes. "Typically insurance doesn't cover this."
Another resource that parents of deaf or hard-of-hearing children strongly value is family workshops and events, Wells notes. At a recent workshop put on for families by the Lions Center, Wells found himself smiling when he observed parents interacting with other parents who have children who are deaf or hard of hearing.
"They were exchanging phone numbers and talking about different camps they might send their children to," he recalls. "They learn so much from each other. It's so important that parents connect with other parents who can relate to their situation."
Sundberg concurs. The Michigan Chapter of the A.G. Bell Association hosts a number of family events during the year, including one at the Detroit Zoo called "Hear the Roar." During the spring zoo event last year, deaf or hard-of-hearing adults in attendance held bags of beads. The deaf or hard-of-hearing kids each held a rope on which to collect and string the beads. To obtain a bead, the children had to find the deaf or hard-of-hearing adults and ask them questions about their hearing loss, their experience in school, hearing aids, etc.
"For Rolan, this was so great," Sundberg says. "He is one of two kids in his whole elementary school with hearing loss. The more he is around other hard-of-hearing kids and adults with hearing aids, the better for him."
While Sundberg acknowledges she and the other members of the A.G. Bell Association share a different perspective from a significant faction of the deaf and hard-of-hearing community, she believes they all share the common goal of doing what they feel is best for their child.
"When new parents learn their child may be deaf or hard of hearing, my advice is this: Just put your arms around that baby, love him or her, and be there," she says. "Learn all you can, so you can make the best choice for your child."