When Anne and Jim Desler of Redmond first learned that their newborn
son Will might have trouble hearing, they were shocked. Like 90 percent
of all parents of children with hearing loss, the Deslers are both
hearing. The family has no history of deafness.
Though initially saddened by Will's diagnosis, the Deslers count
themselves fortunate to have learned so early of their son's profound
hearing loss. Born in May 2003, Will was among the first babies to be
screened through Evergreen Hospital's then newly launched newborn
hearing screening program. Thanks to his early diagnosis and the
Deslers' newly acquired knowledge about treatment and education
choices, Will entered a program in his first months of life -- a
critical time for exposure to language -- and was treated using the
most advanced techniques.
"We looked into all of our options and realized what we wanted was for
Will to be a participant in the hearing world," Anne Desler says. "We
wanted him to have his options open to him."
Will was fitted with hearing aids at 2 1/2 months of age, so he could
gain awareness of sound as soon as possible. At just over 1 year, Will
underwent surgery to have a cochlear implant -- a device that provides
direct electrical stimulation to the auditory nerve -- surgically
implanted under the skin behind his ear. The implant gave Will access
to a greater and clearer range of sound.
Desler says Will has never really been behind in his development,
thanks to these early interventions combined with ongoing efforts by
the family and teachers to provide access to sound and speech. In May
2005, one year after his cochlear implant surgery, Will was tested for
his receptive and expressive communication ability. "At 25 months old,
he tested at 23 months for expressive communication and at 25 months
for receptive communication," Desler says. "He is right up there with
the national average for his age. We are really proud of him."
Will's success story is an example of the convergence of several
significant developments in the diagnosis and treatment of children
with hearing loss: the growth of newborn hearing screening, early
intervention programs and technological advances in treatment.
Hearing loss is the most common birth defect in children, affecting
approximately three in 1,000 births. Before the year 2000, most
children with hearing loss were not diagnosed until they were well
beyond the early critical months for speech and language familiarity,
birth to 6 months of age.
Bolstered by studies published in the past seven years showing the
positive impact on speech and language that intervention before the age
of 6 months can bring, advocates have pushed for universal newborn
hearing screening across the country.
Although such screening is not yet mandated in Washington, many of the
state's birthing hospitals have adopted newborn screening voluntarily
in recent years. With money from two federally funded grants, the
Washington State Department of Health and Children's Hospital and
Regional Medical Center (CHRMC) teamed up in 2000 to launch the Early
Hearing Loss Detection, Diagnosis and Intervention program (EHDDI),
which has contributed to bringing a majority of birthing hospitals on
board the screening program.
While in 1998 only about 4 percent of birthing hospitals screened all
their newborns for hearing loss, by 2005 that number had climbed to
more than 90 percent. Additionally, the majority of those hospitals
submit their screening information to the state for follow-up.
"With Universal Newborn Hearing Screening, we are identifying and
intervening before the age of 6 months, and we've seen great
improvements in the outcomes for families," says Susan Norton, Ph.D.,
CCC-A, who is chief of clinical and research audiology at CHRMC. "Many
children who have reached school age are now going directly into their
neighborhood school and classroom. That's really encouraging."
When a newborn is tested and fails an initial hearing screening, it is
critical that the child receive thorough follow-up testing as soon as
possible. Children experience varying degrees of hearing loss, ranging
from mild to severe-profound (deaf).
Once a child is identified and diagnosed with a hearing disorder,
parents are quickly faced with a wide array of decisions about their
child's treatment and the role the family will play in assisting the
Sandy Duncan, lead family resources coordinator with the Washington
Health Foundation, is often the first person King County familes speak
to following their child's diagnosis with a hearing loss. Duncan helps
families wade through the flood of emotions and mass of information
they encounter upon learning of a child's disability.
"We try to be as supportive as possible, and let (families) know that
there are some really good programs for infants and toddlers with
hearing loss, and there is a lot of potential for their child to learn
speech and language," Duncan explains. "The recent research is great
because it says that not just one learning model is the best; it says
that whatever works best for your family is going to work best for your
Early intervention programs in King County that serve children from
birth to 3 years of age include Family Conversations, which uses a
combination of spoken and signed exact English (SEE); Listen and Talk,
which focuses solely on auditory communication; and the Parent-Infant
Program at the Hearing, Speech & Deafness Center (HSDC), which uses
American Sign Language along with spoken communication. All three
programs accommodate children using different interventions, including
hearing aids and cochlear implants.
With the boom in newborn screening, the demand for trained
professionals like Duncan in roles ranging from counseling to diagnosis
to treatment is outpacing the supply. "When you talk about early
intervention specialists, that is a large gap in services in the state
of Washington," says Nancy Dalrymple, EHDDI program coordinator for the
Washington State Department of Health. "One of the things the EHDDI
program has been doing over the past couple of years is trying to build
an infrastructure to support the anticipated increase in the number of
children identified with hearing loss."
The search for improved hearing devices is evolving rapidly. According
to Kathleen Sie, M.D., pediatric otolaryngologist and director of the
Childhood Communication Center at CHRMC, researchers are working to
make several improvements to cochlear implants. These include
miniaturizing the devices and eventually developing completely
implantable devices (currently the device involves parts that are
implanted and parts worn on the body or outside the ear), improving
power sources and making music more accessible.
Hearing aids are also changing to bring clearer sound to the wearer.
"There's been huge advancement in the quality of hearing aids and the
application of digital signal processing," CHRMC's Norton says.
In the realm of long-term studies, the hearing research community is
actively looking at possibilities for actually restoring normal hearing
to those with hearing loss. University of Washington's Virginia Merrill
Bloedel Hearing Research Center is one of many research centers
energized by the discovery in the 1980s of hair cell regeneration in
birds. Hair cells are the sensory receptors of the inner ear -- without
them, sound cannot reach the auditory nerve. The promotion of cell
regeneration in the human ear is a tantalizing possibility that
researchers hope to bring about in the next 20 years.
Opportunities for children with hearing loss in Washington are
improving continually. Says Anne Desler: "We are so thankful for the
parents that went before us, who had to pave the way and make it a
little easier for us."
Rhonda Aronwald, a freelance writer, lives in Seattle with her husband and 7-year-old son.
- Newborn hearing screening in Washington: www.newbornhearingscreening.org
- Information on cochlear implants: www.asha.org/public/hearing/treatment/cochlear_implant.htm
- University of Washington's Virginia Merrill Bloedel Hearing Research Center: http://depts.washington.edu/hearing