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Because of all these considerations, this ad hoc committee decided (after prolonged considerations) to work with the legislature and the AAP to seek legislation mandating universal newborn screening statewide. House Bill 205 was enacted into law October 7, 2005.11 The Advisory Committee has continued as a voluntary group and is now six years old. With this new legislation, Delaware was screening over 95% of all newborns in Delaware. This also included babies from surrounding states who were delivered in Delaware hospitals.
In 2006 the Delaware Advisory Committee recommended testing all newborns with both OAE and automated auditory brain stem response (AABR) to help identify babies with mild hearing loss. This did not work as expected, since it required almost twice the work for the tracking and also increased our loss to follow-up. If a baby passed the AABR but failed the OAE, he or she was still listed as a fail and had to be followed until either diagnosed with hearing loss or proven to have a normal ABR. This meant that with this system, DPH had to track four tests per baby instead of two. After a few years, it was clear that this was not working and it was discontinued. Delaware changed over to an AABR-only testing for all
well newborns. Until recently, Delaware continued doing tandem screening for all NICU babies (OAE and AABR together). Chart review showed that it was not helping diagnose more babies, and OAE was discontinued at some of the NICUs.
In 2012, a new updated House Bill 384 became law. This bill reformed the newborn hearing screen law by adding an early intervention mandate and requiring all children with hearing loss to be referred
to Part C services (Part C is the legal term for the birth to three Early Intervention Program). This new law also established “advise the Secretary on issues relating
to the newborn hearing evaluation,
intervention, treatment, and follow-up
care for infants and children with hearing 12 The work and administration of but the new law formalized the process and provided the Advisory Board with legal and
During these last few years the state has
periods of time, including at DPH. This has impacted the ability to have adequate the EHDI program has been helping to identify and track hearing loss in 15 to
25 infants annually. In partnership with the Early Intervention Program and the birthing hospitals, this program has been very successful in diagnosing children with hearing loss and assuring their enrollment in the Early Intervention Program.13 At the same time, the Advisory Board serves as a site at which stakeholders — including parents and educators — meet as partners to be heard the program and support the families
and children. EHDI is currently working to assess the educational opportunities available to all children and also testing high risk infants for Cytomegalovirus (CMV), the most common infectious case of congenital hearing loss.
It is of note that the EHDI program is currently supported by the hospitals that pay for the newborn screening and by federal grants that pay for the actual program. The staff is fully supported by HRSA grants
that have been obtained since 2002 through the Maternal and Child Health Bureau. Technical assistance, as well as educational and equipment support, has been provided by the CDC since 2001.
It is important to remember that EHDI is not successful without the “I” of HB 284, all children who are deaf or hard of hearing are referred to Part C as soon as a diagnosis is made. Delaware’s
Child Development Watch program (CDW) is the entry point for these services for all children who are deaf or hard of hearing. The options for parents
to support their children are numerous. Deciding which is the best path forward can be overwhelming; however, the earlier these children start early intervention,
the better their speech and language outcome.14 The team approach of CDW helps support parents in making these from some type of augmentation device, and some families may also use American Sign Language as either an adjunct or primary language.
The EHDI program continues moving forward. One of the current challenges
is being able to identify every child born Delaware’s population is fairly mobile, address. These patients are not easy to track, which must be done in order to assure their early diagnosis and appropriate early intervention. DPH is working closely with hospitals, providers, and the Child Watch Early Intervention Program in order to assure the best possible language outcome for all these Delaware children.
CONCLUSION
Over the past 25 years, there has been substantive improvement in the detection and early intervention of children who are deaf or hard of hearing. In 1993,
only 8% of Delaware births were tested for congenital hearing loss. At that
time, only babies born at one of three Delaware NICUs had their hearing tested and no hospital had universal newborn hearing screening. There was no system in place to track babies who failed their screen, and there is no data available on the number of babies diagnosed with hearing loss. In 2015, more than 96% of
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Del Med J | April 2018 | Vol. 90 | No. 4
