A Reminder During Newborn Screening Awareness Month: Infant Hearing Tests Are Vital to Children’s Futures

By Nadine Dehgan

Hearing Health Foundation (HHF) joins the healthcare community and all parents in celebrating Newborn Screening Awareness Month.

Newborn screenings assess babies’ health within the first 24 to 48 hours of life. These quick and painless evaluations check for potentially harmful conditions that would otherwise not be apparent at birth. Included in this process are screenings for hearing loss, which is detected in three out of every 1,000 babies born in the U.S. 90 percent of babies identified with hearing loss have parents with typical hearing.

Hospitals use two safe and comfortable newborn hearing screening tests. Otoacoustic emissions (OAE) tests examine the nearly inaudible sounds, or emissions, produced by ear stimulation using a soft foam earphone and microphone. The inner ears of babies with typical hearing produce these emissions when stimulated by sound, while those with a hearing loss greater than 25-30 dB do not. Auditory brainstem response (ABR) tests measures how the hearing nerve responds to sounds. A hearing specialist plays sounds into the baby’s ears, while bandage-like electrodes are placed on the baby’s head to detect brain wave activity. Printed results show a pass or fail result.

A proactive approach to hearing health begins at birth. An early hearing loss diagnosis—before hospital departure—enables parents and families to pursue intervention, such as hearing devices, assistive devices, and/or sign language, as promptly as possible. Intervention of any kind permits children with hearing loss to enjoy healthier outcomes related to speech and language acquisition, academic achievement, and social and emotional development.

“When [profound bilateral] hearing loss was confirmed, I felt I had to do everything in my power,” recalls Dr. Nada Alsaigh, a pathologist, who made sure her son, Alex, was first amplified with hearing aids at three months. “We were lucky to know early, so Alex was not affected in a negative way.”

“[My son] Ethan received his first set of hearing aids when he was eight weeks old,” explains Jason Frank, a corporate attorney and member of HHF’s Board of Directors. “It’s really been amazing to watch over the last seven years how far he’s come. He has a wonderful appetite for learning.”

Cognitive advancements for children like Ethan and Alex would not be possible without support for universal newborn hearing screening (UNHS) from HHF and likeminded organizations. In 1993, a staggeringly low rate of newborns—five percent—were tested for hearing loss in the hospital. This number increased to 94% by the end of the decade. Today, nearly all babies undergo this vital test.

“The institution of infant hearing screening at birth has been critical to speech and language development in the first two years of life [of a child with hearing loss],” says Anil K. Lalwani, M.D., Columbia University surgeon and member of HHF’s Board of Directors. “Before infant hearing screening was mandated, the average age of diagnosis for hair loss in a child with profound was two-and-a-half or three-years-old—later than recommended to begin intervention.”

In fact, a 2017 University of Colorado Boulder study of children with bilateral hearing loss further underscores the need for identification of hearing loss at a young age. Primary investigator Christine Yoshinaga-Itano, Ph.D., and team found that children who received intervention for hearing loss by six months had significantly higher vocabulary quotients than those who did not.

Though UNHS is highly-regarded by hearing experts like Drs. Lalwani and Yoshinaga-Itano, its security has been jeopardized. Last year, proposed cuts to the 2018 federal budget threatened to remove the $18 million allocated toward newborn hearing screenings in all 50 states. Given the lifetime costs of profound untreated hearing loss of nearly $1 million, a $18 million investment in screenings is surely worthwhile. Both the fiscal and health benefits of UNHS generated bipartisan support and, in 2017, the Early Hearing Detection and Intervention (EHDI) Act became law to sustain funding until 2022.

“We can’t imagine what it would have been like not to know,” Jason says. Ethan taught himself to read at three-and-a-half years old, which Jason and his wife believe is a direct result of Ethan’s access to sound and language at a very early age.

HHF implores policymakers to preserve newborn hearing screenings come 2022. The elimination of UNHS would be a tremendous disservice to our nation’s children with hearing loss. Learn more about how early intervention created positive health outcomes for Ethan and Alex in HHF’s short video (also shown above).

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How One Institution is Changing South Africa’s Approach to Pediatric Hearing Loss

By Vicky Chan

Carel du Toit Center (CDT) has been at the forefront of hearing loss education for the past 45 years—offering a mainstream education and speech development programs for children aging from infancy to 10 years old in Cape Town, South Africa. Although an estimated 6,000 babies are diagnosed annually with permanent bilateral hearing loss in the country, early detection and intervention programs are extremely uncommon. CDT is one of the only institutions in the area that offers an early intervention program for children with hearing loss and their parents.

A young student with hearing loss. Credit: Carel du Toit.

Because the damaging effects of hearing loss are widely dismissed by South African legislation, 72% of the nation’s hospitals do not offer any form of hearing tests and fewer than 1% plan to implement newborn hearing screenings. Consequently, 90% of newborns do not have access to a hearing test and families do not receive information about pediatric hearing loss.

Hearing loss is usually detected only after the child’s caregiver notices unusual behavior or speech and language delays. The average age of diagnosis for a child with hearing loss in South Africa is 31 months old, and the typical age at which one is first fitted with hearing aids is 39 months. This is well beyond the critical time period for a child's speech and language development, which depends immensely on the brain’s responses to hearing in the first two years of life.

To help parents understand their child’s hearing loss, the school provides a family-centered early intervention program in their CHAT (Children Hear And Talk) Centre. Coaching families about how to cope with hearing loss is a key component in teaching a child to talk. Parents are encouraged to attend weekly sessions at the CHAT Centre where they are taught to incorporate speech into their family’s daily routine so their child can continue to develop language and social skills at home. The CHAT also provides weekly sessions for children who are too young for school so they can be enrolled in an early intervention program as soon as possible.

“This is your journey with your child and you are absolutely equipped to teach your child to talk through listening,” one teacher says of CHAT. “It may not have been what you were expecting—but embrace it.”

The school employs more than 60 staff, including teachers, early interventionists, social workers, audiologists, psychologists, and speech therapists, who strive to create a natural environment that promotes listening experiences and intensive speech training. Students are fitted with the appropriate hearing technology and learn with the support of the school staff and their parents.

“I had a passion for special needs children and ended up in deaf education,” reflects an CDT educator. Echoing this sentiment, another teacher comments, “Teaching a child a new word or concept everyday makes it very rewarding. You are changing their lives on a daily basis.”

CDT understands that early diagnosis and intervention is the cornerstone for obtaining the best outcome for infants with hearing loss, which is why the center also partners with social services and South Africa’s State Health Department to provide equipment and personnel to test high-risk babies in the largest hospital in West Cape. With a mission to ensure all children in South Africa can function optimally in a hearing world, CDT is making strides to change outcomes for those with hearing loss nationwide.

For more, visit http://careldutoit.co.za/.

The Power of a Mother’s Advocacy

By Vicky Chan

Like most moms, Brandy has always been a champion for her three sons, Anthony, 12, Andersyn, 10, and Ayden, 7. Her sons are unlike most sons; each has bilateral sensorineural hearing loss and enlarged vestibular aqueduct syndrome.

Brandy’s journey as a parent-advocate had a difficult start. She was completely unfamiliar with hearing loss in children before she became a mother, and accessing proper treatment for the trio was a challenge. Brandy juggled numerous audiologist appointments that were a five-hour round-trip drive from home. And, for her oldest child, Anthony, a hearing loss diagnosis came two years delayed.

Clockwise from left: Ayden, Andersyn, Anthony, and Brandy.

Anthony had typical speech development and passed all his first- and second-year wellness and hearing checks by his pediatrician. When he was 2, Anthony fell and hit his head. Brandy suspected the trauma had caused either hearing loss or a cognitive disorder, but the doctors assured her Anthony suffered no permanent damage and took no action for him.

Brandy’s instincts were correct. When her second child, Andersyn, was diagnosed with hearing loss at birth a few months after Anthony’s head injury, she insisted Anthony receive a detailed hearing evaluation. Born in 2005, Anthony never received a newborn screening despite the passage of the Newborn and Infant Hearing Screening and Intervention Act of 1999, which mandated the practice.

The legislation quickly improved the rate of newborn hearing screening. In 2005, 94.2% of babies in the U.S. were screened, but some states lagged behind. In Tennessee, where all three of Brandy’s sons were born, only 66.9% of newborns were tested—the lowest in the nation. Unfortunately, Anthony was among the 30.1% of Tennessee’s babies not screened. However, by Andersyn’s birth in 2007, the state’s rate increased to 91%. It was only due to Brandy’s perseverance that Anthony was ultimately given a comprehensive exam, diagnosed with severe bilateral hearing loss, and fitted for hearing aids.

Brandy’s message is that newborn screening is vital. “If your child has hearing loss, it is best to start intervention as soon as possible and have your child fitted for hearing aids or cochlear implants if they need them.”

With his hearing aids, Anthony was fascinated by all the new sounds he could hear—including the squishy sound of Brandy’s flip-flops as the pair walked through a parking lot. At that moment, Brandy realized it was likely that Anthony, like Andersyn, was born with hearing loss, but it only became detectable to her after his head injury.

Andersyn was given a newborn hearing test so Brandy knew immediately that he had severe bilateral hearing loss. Later on, one audiologist suggested he wasn’t benefiting from his hearing aids, but Brandy knew differently; with Andersyn’s hearing aids turned up, a sound as subtle as crinkling paper near his ears would startle him. Andersyn now does exceptionally well with hearing aids, as does Brandy’s third and youngest child, Ayden, who was also born with severe hearing loss in both ears. The boys’ doctors have cited a genetic connection of unknown cause.

Today, hearing loss is an ordinary part of life for her three boys, thanks to Brandy’s tireless advocacy. With help from FM systems and speech therapy, Anthony, Andersyn, and Ayden all receive a mainstream education. They enjoy baseball, basketball, hunting, swimming, riding four wheelers, and fishing. HHF’s CEO, Nadine Dehgan, exclaims, “All three boys are incredibly fortunate to have Brandy, a devoted mother who has prioritized their hearing health.”

Anthony, Andersyn, and Ayden are participants in HHF's "Faces of Hearing Loss" campaign.

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The Next Two Million Days

By Lauren McGrath

The future sounds clearer and looks brighter for Ethan, age 6, who recently began wearing ReSound LiNX 3D hearing aids recommended by his audiologist. His new hearing aids were very generously donated to him by ReSound.

Ethan was born with mild-to-moderate hearing loss in his right ear and moderate hearing loss in his left. Thanks to universal newborn hearing screening legislation, an initiative promoted by Hearing Health Foundation and other organizations, Ethan was diagnosed at birth and able to receive immediate intervention. In 1993, only 5 percent of newborns were tested at birth for hearing loss; today 97 percent of babies are screened before they leave the hospital. Since age 6 weeks, Ethan has worn hearing aids and received speech therapy. He is now a happy first grader at a New Jersey school with many on-site services for students with hearing loss.

Ethan is an older brother to twin girls, an avid self-taught reader, a math enthusiast, a soccer player, and a martial arts student. He is ecstatic that his new hearing aids have already improved his life; from the moment he put them on, he noted how much more easily he could hear with them compared with his previous pair.

He especially appreciates their small size; the devices do not impede his favorite activities and don’t fall out. As Ethan is easily overwhelmed by noise, he also likes that he can seamlessly adjust the volume on his hearing aids through the ReSound Smart 3D smartphone app. He’s so proud of their style and features that he brags about them to his soccer teammates.

“Ethan asked me, ‘Can I wear my new hearing aids for the next two million days?’” says Jason, Ethan’s dad. It speaks volumes to Ethan’s experience that he is ready to make a 5,500-year commitment to his new hearing aids. At a young age, he is already on track to overcome the challenges associated with hearing loss. Ethan is confident about his hearing loss, and he and his family are thankful he was graciously provided with hearing devices that make him happy.

Ethan is one of our youngest participants in "Faces of Hearing Loss." This article originally appeared in the Winter 2018 issue of Hearing Health magazine. 

Universal Newborn Hearing Screening to Prevail Under EHDI Act of 2017

By Nadine Dehgan

Federal funding for universal newborn hearing screening will prevail until 2022 under the The Early Hearing Detection and Intervention (EHDI) Act of 2017, which officially became law last month. Hearing Health Foundation (HHF) is ecstatic that there was bipartisan support for critical early testing and intervention for children with hearing loss.

Introduced in March by Representatives Brett Guthrie (R-KY) and Doris Matsui (D-CA) as an amendment to the Public Health Service Act, the EHDI calls for early detection, diagnosis, and treatment of deaf and hard-of-hearing newborns, infants, and young children. Each day nationwide, 33 newborn babies—approximately three out of every 1,000 births—are diagnosed with hearing loss, making it the most common congenital birth defect. Left undetected, hearing loss can negatively impact a child’s speech and language acquisition, academic achievement, and social and emotional development.

HHF, a long-time supporter of universal hearing screening for newborns, applauds the enactment. HHF was instrumental in highlighting the need for similar legislation in the 1990s. In 1993, only 5% of newborns were tested at birth for hearing loss. By 1997, 94% were tested before leaving the hospital, and today 97% of babies are screened before they leave the hospital.

Earlier drafts of the federal budget put the coverage of these crucial procedures at risk, prompting legislators in both the Republican and Democratic Parties to take action quickly. In addition to the bill in the House, a companion measure was introduced in the Senate by Senators Rob Portman (R-OH) and Tim Kaine (D-VA). In early October, the House passed the Act following the Senate’s unanimous approval in September.

“This program exemplifies the importance of early detection and intervention,” said Congresswoman Matsui. “By ensuring that infants have access to hearing screenings at birth, parents can make informed choices about their care management early on. This is critically important, given that so much of a child’s development happens in the first few years of their life. I’m pleased that through the passage of this legislation, the newborn screening and intervention program can continue to improve health outcomes for kids.”