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
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