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March / April 2006 Cover


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Connections for Newborns in Need

Illustration by Carol Nichols


Connections for Newborns in Need
Statewide database links at-risk babies with services for early intervention

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The epidemiology of child development
University of Maine researchers Craig Mason and Shihfen Tu are methodologists who specialize in informatics to benefit early childhood development.
 

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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," says 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 had responded to gestures and vibrations, turning her head, smiling, laughing. But the words never came.

"Even when we went for a hearing test, we still didn't think there would be an issue," Hayden says. "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. Her experience was unlike that of newborns today who are screened for hearing loss before leaving Maine hospitals. As a result, Jessica and her parents lost 15 months to silence.

However, 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 says. "But we thought that if she had access to sound, maybe she could learn to listen, and maybe then she could learn to speak. We were not trying to fix a broken child, but to provide one more opportunity for her."

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. Sings. Reads aloud.

"Early intervention with parental involvement is a powerful healer. It restores some order and sense in your life," says Hayden, who has given a presentation about his family's experiences to healthcare providers at Children's Hospital Boston, and who last year testified in Augusta before the legislature's Appropriations and Education committees.

"One of the first things I now tell parents: Today is a new day. With early intervention, their dreams are just beginning."


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 the Genetics Program in the Maine Center for Disease Control and Prevention (Maine CDC, previously the Bureau of Health).

To help them keep track of all the data, the Maine CDC partnered with the University of Maine to carry out the 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 Defect Registry. The goal of the collaboration is to help children and their families receive information and appropriate services.

Prior to ChildLINK, a program currently housed in UMaine's Center for Community Inclusion and Disability Studies (CCIDS), and affiliated with the College of Education and Human Development, 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 most is improved access to specialty services, as well as 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," says 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 3 years old. By that time, a child with hearing disabilities has lost a lot of time in cognitive and language development."

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?'" says Tu, a UMaine assistant professor of education and applied quantitative methods, and a 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)."


Universal newborn hearing screening, which is offered in hospitals as part of routine newborn care, is key to preventing speech and language delays, and developmental disabilities that can occur if the hearing loss goes undetected, says Patricia Day, nurse coordinator of the Maine Birth Defects Program in the Maine CDC.

"Sometimes people think we're a surveillance program, that we're just about the numbers," says Day. "But our first priority is getting information to parents and assisting them into services. We also want to provide healthcare providers with national information and incorporate what we're seeing here."

Newborn hearing screening is recommended by the American Academy of Pediatrics. The United States Centers for Disease Control and Prevention's (CDC) Early Hearing Detection and Intervention (EHDI) Program, as well as several other organizations, have endorsed national goals to promote communication from birth for all children. The first three goals constitute the "1-3-6 plan," calling for all newborns to be screened for hearing loss before age 1 month, and preferably before hospital discharge; all infants screening positive to have diagnostic audiological evaluation before age 3 months; and all infants identified with hearing loss to receive appropriate early intervention before age 6 months.

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. Indeed, some parents refute positive screening results with their own tests to see if their infants startle to loud noises, like the banging of a pot or ringing of a telephone. Resorting to such traditional yet primitive hearing tests for infants may only signify that the baby is not completely deaf; the child may still have substantial hearing loss.

"That's why public awareness is so important," says 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."

A study by the CDC estimated that those lifetime costs are expected to be $2.1 billion for persons born in 2000 with hearing loss; lifetime costs for an individual with early childhood-onset hearing loss are conservatively estimated to total more than $275,000.


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 multiuniversity 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."

The work being done at the University of Maine has been gaining increased national attention. Quansheng Song took the lead in developing a version of ChildLINK for Guam, and Mason now also is a CDC informatics consultant. In that role, he and other CDC officials are 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," says 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 birthdays. Now a formalized reporting structure allows 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.

A decade from now, the hope is that the data will help to delineate any environmental or other causes for the incidence of birth defects in Maine, says Day. In addition, the data sets could help determine future prevention or healthcare strategies. Researchers will be able to look at patterns in an effort to more fully understand, and ultimately prevent or better treat, conditions in newborns that can cause developmental disabilities.

by Margaret Nagle
March-April, 2006

Click Here for more stories from this issue of UMaine Today Magazine.

 

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