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Lori Hayden accompanies daughter Jessica to the classroom on her first day
of school. Diagnosed at 15-months with profound bilateral deafness,
Jessica underwent elective surgery to receive a cochlear implant
around age 2. (Scott Hayden photo)

Scott Hayden combs daughter Jessica’s hair at a classroom play station.
In the classroom, the teacher wears a small microphone to provide
direct, amplified speech to Jessica, who requires no other educational
aids or assistance. (Lori Hayden photo)

Statewide Database Links At-risk Babies with Services for Early Intervention

Scott Hayden remembers the day the Earth stood still.

It happened when he and his wife, Lori, were told the reason that their healthy, vivacious 15-month-old daughter had not yet learned to speak.

Jessica was diagnosed with profound bilateral hearing loss. She is deaf.

“By far, it was the most devastating news that I’ve ever received,” said Hayden. “It hit me with a force that I couldn’t imagine; it brought me to my knees. I felt that my family’s dreams had been shattered. I cried, and cried and cried.”

The diagnosis that resulted from a hearing test came as a complete surprise to the Haydens. All along, Jessica responded to gestures and vibrations, turning her head, smiling, laughing. But words never came.

“Even when we went for a hearing test, we still didn’t think there would be an issue,” Hayden said. “It’s amazing how babies adapt.”

Jessica was born in Bangor, Maine, in 1999, a year before the state legislature established the Maine Newborn Hearing Program and five years before hospitals began reporting screening results. That meant that, unlike newborns today who are screened for hearing loss before leaving Maine hospitals, Jessica and her parents lost 15 months to silence.

Once informed, the Haydens made up for that lost time with the help of early intervention services paid for under the federal Individuals with Disabilities Education Act. Initially, the family worked with an audiologist, early child family consultant, speech-language pathologist, and developmental therapist. Later, there was auditory-verbal, recreational and music therapy, as well as family training.
Jessica first used hearing aids and learned American Sign Language. Ten months later, she underwent elective surgery to receive a cochlear implant.

“For Jessica, the hearing aids were of little or no benefit,” Hayden said. “But we thought that if she had access to sound, maybe she could learn to listen, and maybe then she could learn to speak.”

Last fall, Jessica started kindergarten. In the classroom, the teacher wears a small microphone as part of an FM auditory trainer system that provides direct, amplified speech to Jessica. The now 6-year-old uses no other educational aids or assistance.

She talks. She sings. She reads aloud.

Jessica is one of an estimated five youngsters born every year in Maine with profound deafness. Annually, as many as 50 out of Maine’s 13,500 babies are born with hearing loss, most mild to moderate, according to Ellie Mulcahy, program director of Genetics Program in the Maine Center for Disease Control and Prevention (Maine CDC, previously the Bureau of Health).

To track these data and help children and their families receive information and appropriate services, the Maine CDC partnered with the University of Maine to carry out a mandate of the legislature by instituting ChildLINK, a sophisticated data system that integrates the information from the state of Maine Electronic Birth Certificate with information from the Newborn Hearing Screen, the Newborn Metabolic Screen, and the Birth Defects Registry (See story: Researchers Specialize in Epidemiology of Child Development).

Prior to ChildLINK, a program currently housed in UMaine’s Center for Community Inclusion and Disability Studies (CCIDS), there was no centralized, statewide collection of information about the occurrence of hearing loss or birth defects to facilitate systematic follow-up with families by the Children with Special Health Needs Program in the Maine CDC. For the parents of newborns with hearing loss or birth defects, a key to helping their children is improved access to specialty services, and resources that can provide emotional and economic support.

“The desire was to set up a system across the state to screen all newborns, so that those at risk for hearing loss could be identified and referred to diagnostic evaluation and early intervention services,” said UMaine researcher Craig Mason, who created ChildLINK with colleague and wife, Shihfen Tu, and with Quansheng Song, the lead programmer and database administrator for the project.

“A number of studies have found that even if a hearing screen was done in hospitals and infants were identified as at-risk, up to two-thirds of them did not go on to see an audiologist and many did not receive services until they were three years old. By that time, a child with hearing disabilities has lost a lot of time in cognitive and language development,” said Mason.

Today, all 32 birthing hospitals in Maine are enrolled in ChildLINK, providing the Maine CDC with data on infant hearing screening tests and birth defects.

“Imagine if you’ve just had a child and been told he or she has hearing loss. As a parent you wonder, ‘what do I do now?’” said Tu, a UMaine assistant professor of education and applied quantitative methods, and the research and evaluation coordinator for CCIDS. “With the system of newborn screening and early identification, opportunities will be provided for parents to seek expertise from multiple agencies for intervention strategies (that can affect their child’s quality of life).”

Hearing loss is one of the most common problems in infancy — and one of the most treatable. However, it often can be difficult for parents to grasp the significance of early diagnosis and prevention. “That’s why public awareness is so important,” said Mason, an associate professor of education and applied quantitative methods. “Parents need to know that even mild hearing loss can lead to delays in language development.”

Better understanding of the effect of newborn hearing screening and early intervention is the next step in Maine’s program. Mason and Tu are part of a multi-university research group based at the University of Miami that is linking early childhood health data to educational records in Florida. This has provided valuable information in planning educational services in that state, and was key to Florida receiving several child health grants, including selection as a CDC Autism Center. Mason and Tu would like to replicate the work in Maine.

“We hope that some of the work we’re doing can reduce the amount of special services needed by these children in school,” says Tu. “We’re hoping that five years from now, Maine has made significant progress in linking newborn screening and education.”

Mason and CDC officials are now working with New England states to create a collaborative model for tracking the progress of babies born anywhere in the region, including the major metropolitan medical centers where high-risk pregnancies are referred.

“In the past, health officials may have heard about an unnamed baby being born with a rare birth defect,” said Mason. “Such anecdotal stories suggest that Maine could have higher rates of some birth defects (than other parts of the country), but whether we do has remained a question without the data. With the numbers, we can begin to look at the basis for such defects, such as heavy metals, mercury, and lead.”

Of the estimated 200 babies born with a birth defect each year in Maine, many will not live to see their first birthday. The now-formalized reporting structure will allow state health officials to begin to assess the full impact of birth defects on Maine children and their families, including monitoring trends of certain conditions.

The hope is that a decade from now, researchers will be able to look at patterns of data to more fully understand, and ultimately prevent or better treat, conditions in newborns that may cause developmental disabilities.

— Margaret Nagle
Excerpted with permission
from UMaine Today magazine

CENTERPOINT: The Newsletter of the University of Maine
Center for Community Inclusion and Disability Studies,
Maine’s University Center for Excellence in Developmental Disabilities
Education, Research, and Service