As of this year, 101 Michigan hospitals have programs to test the hearing of newborn babies before they go home. These efforts have gotten countless children needed help, before hearing loss hinders their ability to learn and develop speech and language skills.
But what about the many infants whose hearing loss doesn't set in until later, who don't get a newborn test, or who don't receive follow-up attention after a failed test? Many parents and doctors don't know the signs of childhood hearing loss, or the factors that increase a child's risk.
Hearing loss is an "invisible" condition, often not suspected and diagnosed until a child fails to develop speech around the age of two. But by then, a child with hearing loss has missed out on a lot of sound input, which can in turn affect his or her communication, learning, behavior and emotional development -- and future performance in school and at work.
That's why the University of Michigan Health System is launching a new two-part program aimed at improving the odds that Michigan children with hearing loss will be diagnosed early, and assisting families of hearing-impaired children in obtaining appropriate treatment.
The first part of the program, called EHDI ("Eddy") for Early Hearing Detection and Intervention, was created to identify children born with hearing loss and those at risk to develop it later. It's one of the nation's most complete early childhood hearing programs, providing educational materials to parents and doctors, and following at-risk infants until they reach school age to ensure that any hearing loss is caught as soon as possible. This week, UMHS is sending a fax to thousands of Michigan pediatricians and family physicians, introducing the program.
"We salute the spirit of grass-roots campaigns for universal newborn screening, which have done much to improve awareness and diagnosis," says Paul Kileny, Ph.D., UMHS director of audiology and electrophysiology. "Now, we want to expand the safety net through education and clinical innovation, so that every child with a hearing loss is identified and treated as early as possible. We hope our program can serve as a model for the state and the nation."
Hearing loss is the most common disorder in babies at birth, explains Breena Scharrer, M.A., the audiologist who coordinates the EHDI program in the UMHS Department of Otolaryngology. Two of every 1,000 babies born in Michigan in the year 2000 had a significant hearing loss -- ten times the combined rate of all the disorders for which the state screens babies' blood.
"Every child with a hearing loss, no matter when it begins or what the cause, deserves a chance to reach his or her full potential," Scharrer says. "Only through comprehensive screening and follow-up, and vigilance by parents and health care providers alike, can we reach this goal."
Scharrer, together with audiologist Lori Van Riper, M.S., oversees newborn testing in the U-M Women's Hospital birthing center, Holden Neonatal Intensive Care Unit and C.S. Mott Children's Hospital. UMHS has offered hearing screening to all infants with at least one hearing-loss risk factor for more than 15 years, identifying nearly 300 babies with hearing loss.
In the past year, the program was expanded to screen virtually all babies cared for at UMHS. The staff uses the Automated Brainstem Auditory Evoked Response test, the "gold standard" of tests for accuracy but one that requires trained staff to administer.
Among other features, the UMHS program includes seven-days-a-week staffing to ensure that all newborns receive a hearing screening before discharge, most within 12 to 24 hours of birth. Many newborns brought to UMHS because of a high-risk birth or serious medical condition are also tested. Kileny credits Mott Hospital administrator Pat Warner for funding the program, which costs about $30 per baby and is not mandated or funded by Michigan law, nor covered by insurers and other payers despite being recommended by the American Academy of Pediatrics.
Already, the EHDI program has ensured that virtually all infants born or treated at UMHS have their hearing screened. But the screening is only the first step in the comprehensive program.
Even with universal testing, she says, nationwide research has shown that 30 percent of babies who fail the test never get follow-up testing, often because parents don't know where to turn. Countless other infants and toddlers show signs of hearing loss in the months and years after birth, but a lack of information or resources for parents and doctors keep them from getting help.
The UMHS program is designed to overcome these problems. "We hope to improve care through surveillance, diagnosis and treatment," says Kileny. "We want others to copy our approach and help close the gaps in the current system. And, we hope we can increase awareness of risk factors and symptoms among health care providers."
Under EHDI, the UMHS audiology staff has a detailed protocol to follow depending on an infant's initial test results and risk factors. For children whose newborn screening results or known risk factors warrant a referral for additional testing, parents receive reminder letters for upcoming appointments. Their physicians receive information on the test results and risk factors, including recommendations for follow-up care when appropriate.
Even children who pass their initial hearing screening and have no known risk factors for a future hearing loss are monitored under the program. When they have their initial test, their parents receive a brochure outlining important milestones in a child's hearing, speech and language development. Seven months later, the parents receive a questionnaire to complete and return to UMHS, which asks them to examine their child's responses to sounds, and his or her speech development. If the results raise questions about a child's hearing, the family is contacted and a follow-up test is scheduled.
For those parents whose infants are diagnosed with a hearing problem, UMHS has prepared a support program that can help in the first bewildering days and months after diagnosis. The new Children with Hearing Loss: Assistance and Resources for Michigan Families (CHARM) program works with families to obtain hearing aids and locate educational resources in their local area. The program, funded by the Carls Foundation, is provided at no cost to families.
Marci Lesperance, M.D., a pediatric otolaryngologist key to the development of the CHARM program, says, "Even though we are identifying hearing loss in children at a very young age, there's often a delay in the use of hearing aids and other rehabilitation services. But we know that early intervention has a significant impact on a child's speech and language development."
Adds Angelique Boerst, M.A.., an audiologist working with the CHARM program, "This program was created to decrease the time between when a family learns about a child's hearing loss, and when they begin rehabilitation. The sooner families receive help, the better for their child."
Families in the CHARM program will receive a series of newsletters and a new 25-minute video titled "First Steps: An Introduction to Hearing Loss." Produced with funding from FRIENDS of UMHS and the Carls Foundation, it features three children with hearing loss and their parents, and gives basic information on hearing loss, hearing aids, and the importance of follow-up care.
The CHARM program also emphasizes education of parents and health care providers about the risk factors for, and signs of, hearing loss in infants and children. In the fax being sent this week, UMHS will remind Michigan pediatricians and family physicians of the risk factors, introduce the EHDI program, and invite them to request a copy of the "First Steps" video.
For more on EHDI and CHARM, visit www.med.umich.edu/childhearinginfo, or call 734-764-3486.
Listening & speech milestones in children:(If a child does not reach these, a hearing test is recommended.)
* At birth, babies should awaken or startle to loud sounds, make pleasurable sounds and respond or hush to a caregiver's voice.* By three months, babies will watch a speaking parent's face, smile when spoken to, and repeat cooing sounds.* From 4 to 6 months, infants will respond to changes in a parent's tone of voice, look for the source of sounds like dogs barking or doorbells ringing, and babble or use simple sounds.* From 7 to 12 months, toddlers will begin to recognize words for common items, enjoy games like peek-a-boo, and begin to make speech sounds and use one or two words.* From 1 to 2 years, a child will point to objects by name, follow simple commands like "roll the ball", begin to ask simple questions and use more words each month.* From 2 to 3 years, children understand differences like "in and out", follow two-part requests like "get the ball and put it on the table," can name most objects and use short sentences.
Risk factors for hearing loss:* Parent or guardian concern about hearing, speech or language development* Family history of childhood hearing loss* Infections the mother had during pregnancy, such as syphilis, herpes and rubella* Bacterial meningitis* Misshapen ears, and ear "tags" or "pits", or cleft palate* Serious infection or illness needing treatment in a neonatal intensive care unit* Head injury with a skull fracture or loss of consciousness* Repeated or long-term presence of fluid in the eardrum for at least three months
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