When she didn’t meet the normal developmental milestones of the first year — crawling, standing and finding her first words — doctors tested her forcerebral palsy and muscular dystrophy. Nothing turned up positive. Finally, it was her 10-year-old brother who announced one day, “I don’t think Hailey can hear.”
She was 14 months old, and her brother was right.
Had Hailey been born in the hospital, she would have been given a hearing test. When she arrived in 2001, such screening was voluntary but routine in the Cincinnati hospital where her mother, Mary, intended to give birth; today, it is mandatory in 40 states and commonly performed in the other 10.
But hearing specialists worry that many deaf or hearing-impaired babies who fail the screening are not making it to the next level of testing — a more vigorous hearing exam in which an audiologist uses an EEG-like machine that records the brain’s response to sound.
Pediatricians tend to wait and see, though, because only 25 percent of newborns who get to the second stage of testing turn out to have hearing impairments that require intervention. This is especially true when parents say their babies startle or respond to the sound of a human voice.
But hearing loss can range from mild to profound deafness, and that is the point of the effort to screen newborns. “We need to identify children early and provide them with hearing tools and training by the time they are 6 months,” said Dr. John Greinwald, a pediatric otologist at Cincinnati Children’s Hospital Medical Center. Studies now confirm that the earlier the intervention, the better the chance that the child will develop listening and language skills.
“If you hear from birth, you learn to listen,” said Anne Oyler, an audiologist for the American Speech, Language and Hearing Association. “More than 90 percent of what babies learn is from incidental listening. If a child isn’t fitted with hearing aids until 2, that is when he or she will have to start learning what sounds are. If we catch kids in the first few months, we don’t see delays and they do beautifully.”
Newborn screening is just the first step on the path to diagnosis and treatment. For the screening, a device is placed into the ear of a sleeping child and sounds are piped in while an audiologist watches to see if hair cells in the inner ear respond. The screening has led to early intervention: some babies are fitted with hearing aids at 4 to 6 months. (Profoundly deaf children can have cochlear implant surgery by their first birthday, though doctors caution that not all deaf people are good candidates for the implants.)
One in every 1,000 children are born deaf — 90 percent of them to parents with no hearing impairments — and up to 1 in 100 have some hearing loss. As recently as the 1990s, such problems often went undetected and untreated until age 2 to 4.
Even now, many parents of newborns will not accept the diagnosis, says Abbey L. Berg, director of the newborn hearing screening program at Morgan Stanley Children’s Hospital of NewYork-Presbyterian. Parents can be in denial and, at least initially, angry.
Ms. Oyler, whose association has been analyzing the effects of the new mandated screening programs, said, “Hearing loss is invisible.” And preliminary evidence suggests that many children are falling through the cracks; one recent study found that parents of 34 percent of newborns who failed the initial screening did not bring them back for the more rigorous diagnostic test.
Even some states that require newborn screening do not have programs to help very young children learn to listen and speak.
“Without early treatment, these children will not have a good communication system in place,” Dr. Greinwald said. “This can result in a number of learning and behavioral problems.”
David Brown, director of audiological research at Cincinnati Children’s, added: “By getting them early enough, we can change their lives.”
As for Hailey Ems, now 6, she was fitted with hearing aids soon after her brother’s observation. By her second birthday, she had a cochlear implant in one ear. Within months, she reached her childhood milestones. Last September, her parents’ insurance company approved an implant for her other ear as well.
Hailey has been schooled at Ohio Valley Voices, where deaf children are taught to speak, and is now entering a local elementary school. The only thing that will set her apart from her classmates is a small speaker for her desk and a microphone that her teachers will wear to help amplify the sounds of her lessons.
“When she talks, no one knows that she is deaf,” Ms. Ems said. “She speaks so perfectly that some people ask if she is British.”