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Each year, approximately 12,000 babies are born with hearing loss in the United
States. If hearing loss is discovered during the “critical period” for
children to develop their speech and language skills—from birth to the first
two to three years of life—they will have a much better chance of keeping
up with their peers in learning language and speech skills. If they miss this critical
period of development, they can fall far behind their peers in these areas. This
delay, in turn, can affect a child’s ability to learn and interact socially.
Medical and allied health professionals across the United States have played a vital
role in helping identify hearing loss during a child’s first months of life.
As of July 2003, mandatory newborn hearing screening programs have been implemented
in 38 states and the District of Columbia. As a result, roughly 86.5 percent of
all infants are now screened for hearing loss, usually before they leave the hospital.
But screening is only the beginning of a successful path for infants who are deaf
or hard-of-hearing. Newborns who don’t pass the screening should receive an
audiometric evaluation and medical diagnosis before the child is three months of
age. An audiologist is a health professional who conducts a series of tests to determine
whether the child has a hearing problem and, if so, the type and severity of that
problem. An otolaryngologist, or ear, nose, and throat doctor, will try to find
out the reason behind a hearing loss and offer treatment options. These professionals
will help direct parents or other caregivers to resources that can help them. (See
the NIDCD fact sheet Speech and Language
In the year 2000, only approximately half of the children who were referred for
a follow-up examination were brought back for one. Parents of deaf or hard-of-hearing
children in this group were much less likely to take advantage of the many resources
that could give their children the best start possible and the best long-term outcome.
Why don’t some parents return for a follow-up examination?
A working group of the National Institute on Deafness and Other Communication Disorders
identified several important factors regarding why some parents do not bring their
child back for a follow-up examination. They concluded that the number of children
who return for the follow-up examination could be increased if
- Parents fully understood their child’s screening results,
- Parents fully understood the importance of the diagnostic evaluation, and
- Parents were provided with necessary contact and resource information.
A few of the most commonly cited reasons for the low response rate are included
below, along with communication initiatives that you, the medical professional,
can implement to help improve the outcome.
“With so many people involved in the process, it’s difficult to be sure
that the information is being relayed to parents.”—Charles
- Take responsibility This is particularly true if the child is sent
to the neonatal intensive care unit (NICU). A NICU physician may not see the parents
again until several days after the child is born, if ever. A person on the medical
team should be responsible for understanding and being able to interpret and carefully
explain to parents the infant’s screening results. It is extremely important
that this individual be able to explain to parents why a follow-up examination is
needed. Outdated wisdom that "parents can check back in a year to see if there is
a change" is shortchanging children who could benefit from early intervention services.
- Develop a protocol Develop a protocol to ensure that all parents
receive the same information during their baby’s birth and hospital stay.
The more consistent the procedure and message, the less likely that a family will
leave the hospital without understanding the next steps they need to take and why.
With shortened maternity stays, this protocol becomes even more critical.
“There’s no system in place to make sure that parents make and keep
the follow-up appointment.”—Jocelyn
- Obtain the family’s contact information Medical staff should
check in with families after they leave the hospital to make sure they’ve
taken their child to the diagnostic evaluation. To facilitate ongoing communication,
ask families to complete a discharge questionnaire before they leave the hospital,
including names, addresses, phone numbers, e-mail addresses, and any other useful
- Connect the child with a "medical home" As soon as a child is born,
the family should be linked to a "medical home," a term that, according to the American
Academy of Pediatrics (AAP), refers to healthcare services that are coordinated,
comprehensive, family-centered, and accessible, among other things. This centralized
system makes it easier for medical staff to track a child’s medical visits,
recognizing immediately from his or her records whether the follow-up examination
has been completed. To learn more about the "medical home" concept, and how your
role and the role of your staff would be affected, contact the AAP for possible
training sessions in your state or region at www.aap.org.
- Give office staff a lead role Office staff should help families
navigate the healthcare system, which can be quite complicated for individuals who
are unfamiliar with it or who have difficulty reading or understanding the English
language. By providing easy-to-read checklists and contact information, volunteering
to schedule the follow-up appointment, and checking in with families to make sure
that the appointment has been kept, office staff can help provide the needed push
to ensure that this important task is completed.
- Offer broad-based institutional support When feasible, hospitals
should develop a support structure that will help medical staff better perform their
duties in this area. This might include:
- modeling the hearing screening and diagnostic evaluation after an already-established
program, such as metabolic screening;
- integrating health information systems to ensure that each child’s records
are readily available to all health professionals who need to access them; and
- coordinating the billing for hospital services with the receipt of all follow-up
“There aren’t enough people or resources available to handle the screening
and follow-up process.”—Miguel
- Cross-train staff
In communities where resources or staff are lacking, hospitals could cross-train
medical staff to perform screening and follow-up testing. With adequate supervision,
technicians, paramedics and emergency medical personnel, volunteers, nurses (as
well as nurse aides and assistants), lab technicians, and respiratory therapists
can be trained to perform some of these tasks on an as-needed basis.
“Parents don’t seem to understand the importance of the follow-up exam.”—Deborah
- Communicate accurately and carefully Parents need to be told plainly
what their child’s screening results mean and why the follow-up examination
is important. A flier or brochure, no matter how well written or designed, is not
enough on its own: some parents may have difficulty reading it or comprehending
certain medical terms. Or they may toss it away without a glance. Assign the "communicator"
role to a designated staff person, making sure that parents are encouraged to ask
questions. To further guarantee their understanding, have parents explain in their
own words the next step they need to take and why. If you'd like to give parents
something in writing at the end of the sit-down meeting, the NIDCD fact sheet What to Do if Your Baby’s Screening
Reveals a Possible Hearing Problem is available at the NIDCD Web
- Be sensitive to cultural and other differences Your message can
be filtered or even skewed by a number of factors, such as a parent’s culture,
ethnicity, race, and socioeconomic background. For example, concepts that are generally
accepted by some groups may be entirely unfamiliar to others. When communicating
with parents, pay attention to these differences, and avoid using terms or expressions
that may be easily misinterpreted.
- Explain how a hearing loss can hamper a child’s speech and language
development Parents may not understand how a possible hearing loss might
impact their life and the life of their child. Furthermore, they may mistakenly
think that little can be done about it. For these reasons, it’s important
to explain to parents how detecting a hearing loss early--before their child reaches
three months of age--and introducing intervention by the time the child reaches
six months of age can keep a child on the right track developmentally and ensure
he or she achieves the appropriate milestones for successful school, work, and social
“Returning for an appointment can be burdensome for some parents.”—Tia
- Use incentives, when appropriate, such as travel vouchers
Transportation can present a problem for families, particularly those who live in
rural areas or who use public transportation. If possible, provide incentives such
as free travel vouchers to help defray the cost. Another suggestion is to offer
an instant photograph of the child at birth, at the follow-up examination, and during
- Perform the follow-up exam while parents are still at the hospital
If an audiologist is on site, explore ways for infants who don’t pass the
screening to receive a definitive
auditory brainstem response (ABR) test before they leave the hospital. The
ABR involves attaching electrodes to the head and recording electrical activity
in the brain when a sound is generated.
- Combine follow-up exam with well-baby check-ups
Families who are unable to transport themselves to a medical facility may rely on
home health nursing to conduct their well-baby check-ups. In these cases, an audiologist
may be able to provide follow-up testing during one of the home visits.
“Parents sometimes feel powerless and ’out of the loop‘ regarding
their child’s healthcare.”—Gavin
- Involve the entire family in the screening
When possible, make the infant’s hearing screening an interactive experience
for the family by checking several family members’ hearing at the same time.
The more involved a family is, the greater their appreciation for the importance
of the screening and follow-up evaluation.
- Equip parents with information for decision-making
When a child is found to be deaf or hard-of-hearing, parents and other family members
must make a difficult and highly personal decision regarding how the child will
communicate. For example, the child may use a combination of oral and auditory skills
together with assistive or
augmentative devices, such as hearing aids, cochlear implants, FM transmitters,
and other technologies. Or the child may learn American Sign Language (ASL), speechreading,
cued speech, or a combination of oral and manual measures. Medical and other health
professionals can provide information that enables parents to explore communication
options, research findings, and informal support mechanisms before making their
choice. (See the NIDCD fact sheets Communication
Considerations for Parents of Deaf and Hard-of-Hearing Children,
Silence Isn’t Always Golden, and
Milestones in Your Child’s Speech and Language Development.)
- Use a family-centered approach
During office or home visits, physicians should involve the child’s family.
In this way, families are trained to serve as the first line of care for their infants
and are empowered to make sure that their child receives the best health treatment
What all parents need to know before they leave the hospital
- The time frame in which parents need to respond:
- By 1 month: Parents should have their babies screened
by 1 month of age.
- By 3 months: If the baby does not pass the screening,
parents should take him or her to a follow-up evaluation by 3 months of age.
- By 6 months: If hearing loss is confirmed, parents should
have their child enrolled in some type of intervention by 6 months of age.
- Speech and language developmental milestones and how hearing loss affects their
child’s ability to achieve these milestones. (See the NIDCD fact sheet
Milestones in Your Child’s Speech and Language Development.)
- The results of their child’s hearing screening and what the results mean.
(See the NIDCD fact sheet It’s Important
to Have Your Baby’s Hearing Screened)
- For parents of children who do not pass the screening: Why a follow-up examination
is necessary and how to go about getting one. (See the NIDCD fact sheet
What to Do if Your Baby’s Screening Reveals a Possible Hearing Problem.)
- Contact information for making the follow-up appointment for a diagnostic evaluation.
This might include a list of certified audiologists and otolaryngologists in the
area along with addresses and phone numbers. Office staff may also volunteer to
make the appointment for the parents.
- State, federal, and nonprofit resources available to them if their child should
have a hearing problem (see list below).
Free publications from the NIDCD
The following titles are just a sample of those available for free on the NIDCD
Web site. Spanish versions are also available for each of the titles below. Hard
copies can be ordered from the NIDCD Clearinghouse and reproduced free of charge.
The NIDCD Clearinghouse has additional information on speech and language development,
communication options, cochlear implants, hearing aids, American Sign Language,
and other topics covered in this fact sheet. See the “Where can I get more
information?” section for our contact information.
Contact the NIDCD Clearinghouse to be added to our mailing list. You'll receive
the biannual newsletter Inside and a copy of our national directory of
Where can I get more information?
NIDCD maintains a directory of organizations that can answer questions and provide
printed or electronic information on how health professionals can encourage follow-up
hearing evaluations for newborns. Please see the list of organizations at
Use the following keywords to help you search for organizations that are relevant
to how health professionals can encourage follow-up hearing evaluations for newborns:
For more information, additional addresses and phone numbers, or a printed list
of organizations, contact:
NIDCD Information Clearinghouse
1 Communication Avenue
Bethesda, MD 20892-3456
Toll-free Voice: (800) 241-1044
Toll-free TTY: (800) 241-1055
Fax: (301) 770-8977
NIH Publication No. 04-5490
For more information, contact the NIDCD Information