Copyright 2000 The Buffalo News
The Buffalo News
March 12, 2000, Sunday, FINAL EDITION
SECTION: LIFESTYLES, Pg. 2E
LENGTH: 2115 words
HEADLINE:
LISTEN UP, BABY!;
HEARING WILL BE YOUR FIRST TEST
BYLINE: JANE KWIATKOWSKI; News Staff Reporter
BODY:
Ryan Bailey was a slow walker. He was
a slow crawler. And when he sat high in his chair, the 11-month-old would watch
his world unfold around him.
"Ryan was a happy baby, not hard to
handle," recalls Joleen Bailey of Cheektowaga. "You would have never known.
Doctors said he was going to be a laid-back child, and we honestly believed
that."
But one thing struck Joleen and Ronald Bailey as odd. When they
would take their young son for a ride in the car, Ryan would constantly call out
to his mother. No matter how many times she answered, his wails persisted.
Little did she realize that Ryan -- strapped in his car seat -- could not hear
her, and from his perch in the back seat, he could not read her lips.
"He just started reading lips on his own," Mrs. Bailey said. "He said a
couple of simple baby words, but he went from 10 words down to nothing."
Nagged by recurring ear infections, Ryan was one week short of his third
birthday when he was diagnosed with hearing loss. Months of testing finally
determined that the easygoing toddler was born with impaired hearing.
"He lost three years that have to be made up," Mrs. Bailey said of her
now 4-year-old son. "If there would have been mandated testing at birth, this
would not be the case." 'Little audio sponges'
On April 1, a new public
health law will require hospitals to provide hearing screening for every baby
born in New York State. By passing the legislation late last year, New York
joins 22 states that have enacted universal newborn and infant
screening.
But for many parents whose children suffer the invisible
handicap of impaired hearing, one new law won't compensate for lost time.
Each day in the United States, an average of 33 babies are born with
permanent hearing loss, according to the American Speech-Language, Hearing
Association. And as each month of early life passes, doors for language
development shut as tight as a baby's fist.
"Children are born, and you
check if they have 10 fingers, 10 toes, if their color is good, if their
reflexes are good, but if you could only tell whether they can hear," said
Joseph Sonnenberg, chief operating officer of Buffalo Hearing and Speech Center.
"They are little audio sponges," Sonnenberg said. "That's why it is so
important to identify children right away. With early intervention, they have
more of a chance to develop ordinary speech. The first year is critical in
developing auditory pathways."
Without screening, many children with
hearing loss -- particularly mild loss -- are not identified until 2 years of
age, said Sonnenberg.
"At 6 months, babies all sound the same," he said.
"If you listen to a child in China, he would sound like a child in Germany. But
by 12 months, something happens. The child's verbal output starts to sound like
the voices they are accustomed to hearing."
Current policy practiced by
many hospitals in the area calls for hearing screening of "at-risk" infants --
those born prematurely, with respiratory distress or whose mothers were on
methadone treatment, explained Lisa Smith, nurse manager of the Special
BirthPlace at Sisters Hospital.
Two tests are usually used for hearing
screening: Evoked Otoacoustic Emissions (EOAE) and Automated Auditory Brain
Response (AABR), according to Smith. A comparison of the two procedures finds:
-- The AABR test, which takes from 10 to 13 minutes to administer, is a
non-invasive procedure in which electrodes are attached to the infant's head and
arm. Sound pulses are then given via headphones, triggering brain waves that are
detected by the electrodes, recorded and interpreted. The cost to administer --
including set-up, staffing and disposable earphones -- ranges from $ 27 to $ 30
per baby. In addition, the baby must be asleep during the test.
-- The
EOAE test, which takes about four minutes to administer, requires the placement
of a sensitive microphone in the ear canal via a probe. The microphone picks up
sounds generated by the baby's other ear, which then register on a hand-held
monitor. The cost to administer is less expensive -about $ 10 -- but there is a
higher rate of false-positive readings, caused by factors including background
noise, an active baby, or fluid in the middle ear. "She was frustrated and
angry'
"As parents, your guard goes up when you hear about all this
testing," said Barbara Riexinger of Lockport. "Understanding is key. I think the
testing needs to be explained more, and if they tested at a younger age, parents
would better understand how to help. Basically, when you find out your child has
a disability, you arm yourself."
Riexinger should know. Before her
2-year-old daughter was diagnosed with severe hearing loss, she battled several
doctors who repeatedly told her Sarah suffered from a behavior problem. In
reality, Sarah could hear only those sounds louder than a dog's bark.
"It's not that she wasn't listening; she couldn't hear," her mother
said. "She was frustrated and angry a lot because she couldn't hear. It's very
hard to get doctors to believe you. I finally got to the point where I just left
her alone in the doctor's office."
A recent visit to Children's Hospital
found the tiniest of participants -4-day-old twins Essynce and Kierice Coleman
-- doing what most newborns do best, sleeping. But in this
case, the siblings were also undergoing hearing tests. With mother Monique
Coleman looking on, the twins napped throughout the procedure, despite the
electrodes, probes, and a handful of medical staff.
Just hours from
discharge, the twins passed the hearing tests that were part of a comparative
study conducted by Dr. Katheryn Bachmann, director of audiology at Children's.
"Children with hearing impairments act like regular babies. They babble,
they coo," said Bachmann. "Hearing loss is invisible, yet it affects every part
of your life for the rest of your life."
Bachmann's preliminary test
results indicate a two-stage in-hospital screening test would be the most
cost-effective approach. The screening, a combination of the two standard tests
-- would cost under $ 20.
"The nature of a screening test is to
determine who needs further testing and who does not," she added. "But if you
don't provide the screening while the babies are a captive audience, you will
lose them. Some people are unlikely to bring their children back for testing."
The New York legislation, passed in fall 1999, requires hospitals to
establish programs for infant screening prior to discharge, or to provide a
referral for the baby to obtain the screening following discharge. It represents
a first step -- albeit a giant one -- in the battle for early intervention, but
there still remains cause for concern, according to medical professionals.
With the implementation date less than three weeks away, hospitals and
clinics throughout Western New York have yet to receive a directive from Albany
on how to implement the screening program.
"We're getting close to
April, and we don't know what the state wants," said Sonnenberg of Buffalo
Hearing and Speech. "The commissioner of health is supposed to promulgate the
regulations, and that's what we don't have. We're left with a lot of confusion,
and a lack of information coming from the state."
Officials at the state
Health Department, meanwhile, confirm that a directive will soon be issued
containing the required information about implementation.
"At this
point, we are concerned with the quality of the program," said Joseph Rohm,
spokesman for the state Health Department in Buffalo. "It's not just the test,
but the mechanics of what to do next -- the designated follow-up care -- so that
all the children have access to quality care."
The implementation cost
of the screening program in New York hospitals is estimated at between $ 8
million and $ 10 million, according to Rohm. Hospitals, in turn, will be looking
to take part in the Newborn Infant Hearing Screening and Intervention
Act, a federal appropriations package that provides a total $ 3.5
million in grants for states to develop infant screening and intervention
programs.
Cost has been a critical factor in the delay of state-mandated
universal screening, according to Sonnenberg.
"It comes down to a matter
of dollars and cents," he said, "and hospitals being in trouble financially.
Legislatures are reluctant to pass on unfunded mandates to the hospitals. And if
insurance companies keep on covering more procedures, their rates will continue
to go up. No one is questioning the wisdom of the legislation. We are just
wondering where the money will come from."
Ian Stone was 11 months old
when his hearing loss was diagnosed, according to his mother, who had suspected
something was wrong.
"The pediatrician would tell me to wait another
month, to allow his ear infection to clear up," recalls Elizabeth Stone of
Woodside Avenue. But he was seven months old, and all he would say is, "Ha!' No
Mama, no Dada. So I began doing little things around the house to see if he
would respond, like walking up behind him and clapping my hands."
Testing would later indicate that Ian suffered a progressive hearing
loss in both ears. Today, at age 3 1/2, Ian's hearing loss is profound. Five
times he has endured tympanostomic surgery. Ian's been through too much, his
mother believes.
"It's kind of sad, but for the time being he is doing
pretty good," Stone said. "He has come a long way, but he's got a long way to
go. "If he could have gotten his hearing aids sooner, his language base would
have been built sooner. It's a simple little test that helps."
GRAPHIC: ROBERT KIRKHAM/Buffalo News; Ryan Bailey,
right, 4, reading to his brother, Matthew, 3, is catching up on his speech.
Ryan's hearing loss was detected just before his third birthday. "He lost three
years that have to be made up," his mother said. CHARLES LEWIS/Buffalo News;
Susan G. Urlaub and Karen Guerand, both University at Buffalo students, attach
equipment for a hearing test to Kierice Coleman while his twin, Essynce, is
monitored by a different set of instruments for hearing loss. The 4-day-old
twins did fine. CHARLES LEWIS/Buffalo News; UB students Karen Guerand and Susan
G. Urlaub work with audiologist Valerie Shields of Children's Hospital to test
the hearing of 4-day-old Essynce Coleman.
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March 22, 2000 
