Act fast when babies need help to hear
Esther J. Cepeda says cochlear implants can be crucial for infants when the brain is hardwiring spoken language skills.
CHICAGO — Feel like experiencing a few heart-squeezing moments of pure joy?
Just do a quick web search for videos of deaf babies and toddlers hearing their parents' voices for the first time.
Go ahead — and I dare you not to get teary. I couldn't help it, that's for sure. Though some lifelong deaf and hard-of-hearing people reject the modern technological miracle of cochlear implants — surgically implanted electronic medical devices that provide sound inputs to the brain — they are a godsend to parents and families who have babies and other family members who cannot hear.
"Over 90 percent of children born with hearing impairment or deafness are born to two hearing parents who had no idea they were carrying a recessive gene for deafness," said Donna Sorkin, the executive director of the American Cochlear Implant Alliance. "They often have no experience with hearing loss and don't know what to do or how to proceed to help their children hear."
Sorkin's organization reached out to me to spread the word about how important it is to investigate cochlear implants for children with profound hearing problems. These devices can be especially crucial in the first three years of life, when the brain is hardwiring spoken language skills.
I am already a cheerleader for assistive-hearing technology because I'm certified to teach students with hearing disabilities, and I've also seen how absolutely lifealtering cochlear implants can be: Severe hearing loss runs in my family, and my dad hears thanks only to cochlear implants for several years now.
"The technology is there and ready to be taken advantage of, but the biggest impediment for our children is getting appropriate information about treatment options," Sorkin told me. "The amount and kind of information given to parents when a child is born with hearing loss varies tremendously state by state, and even across geographies in the state."
According to Sorkin, a family with no understanding of the medical treatments for infant hearing loss might receive counseling from a local school for the deaf — some of which hold a preference for proliferating the deaf culture movement, which traditionally encourages sign language over implants. Or they might turn to medical practitioners who are not skilled at testing and diagnosing young children with hearing impairments or who may not know much about cochlear implants.
Congress passed the Early Hearing Detection and Intervention Act of 2017 to ensure that health care professionals are trained to provide correct and up-to-date information to parents of deaf and hard-ofhearing newborns, infants and toddlers. But Sorkin says that state and federal government offices just don't have the time or money to put much effort into getting robust outreach programs off the ground.
As a result, U.S. hospitals screen fewer newborns for hearing issues and only intervene with implants for about 50 percent of identified young children. Meanwhile, in the United Kingdom, Sweden, Denmark and Australia, upward of 90 percent of children with profound hearing impairments get cochlear implants. What a waste. Though patients may live far away from the specialists who can perform the procedures, children (and adults) who are good medical candidates for the surgery can almost always get their insurance — including Medicaid and Medicare — to cover the cost.
And the earlier that kids can be screened, identified for services and have their families be taught how to support spoken-language acquisition, the likelier that children with implants will develop flawless language skills. No, it isn't easy. But, trust me, no kid I've worked with who could hear their mom or granddad's voice with the help of technology ever said he or she wouldn't care if they never heard again.
If any parents you know have the painful and scary experience of learning that their baby can't hear, give them this advice: Dive into research about cochlear implants, including from unbiased, credible sources like the U.S. Food and Drug Administration and the U.S. Department of Health and Human Services. Also, be ready to ask health care providers a lot of questions about possible options.
Just don't delay — every second counts for babies and toddlers who need medical assistance to hear.