Sound Beginnings for Newborns in Kansas

Carolyn Nelson

The Kansas Newborn Hearing Screening Program (Sound Beginnings) is a service provided by the Kansas Department of Health and Environment (KDHE) to families with newborn infants in collaboration with participating hospitals, doctors and audiologists.  Kansas enacted legislation, effective July 1, 1999, to provide screening for the early detection of hearing loss in newborn infants.  Every child born in the state of Kansas, within five days of birth, shall be given a screening examination for the detection of hearing loss.  The screening shall be conducted in accordance with accepted medical practices.

Sound Beginnings receives the hearing screening results from the web-based birth certificate system, VRV web, which was developed for the birthing facilities to provide on-line birth certificate transmission including the newborn hearing screening data.  These files are exported from the VRV system and imported into Sound Beginnings' AURIS newborn hearing screening data management system.  The newborn hearing screening AURIS database is populated from the VRV web birth certificate system so that every newborn is counted.  Eighty-nine percent (89%) of the birthing facilities are on the VRV web birth certificate system and account for 99% of births.  All other outpatient screens and rescreens are faxed to Sound Beginnings.

Many approaches are taken in following up with families to ensure that they receive follow-up screenings and/or diagnostic evaluations.  Daily downloads from the VRV identify infants who were not screened prior to hospital discharge and those infants who did not pass the initial hearing screen.  Letters are sent to the out-of-hospital birth families indicating the importance of the hearing screen and supporting financial assistance programs.  A phone call is made to the infant’s primary care physician indicating that their patient has not passed the newborn hearing screen and requesting assistance for repeating to the family the importance of having the rescreen completed and requesting any additional screening reports that Sound Beginnings has not yet received.  Monthly hospital pending reports are emailed to the Newborn Hearing Screening Coordinators.  These reports indicate those follow-up reports that Sound Beginnings has not yet received on babies that did not pass the initial hearing screen or who were not tested.  Based on these reports, audiologists and transferring hospitals are contacted.  Physician pending reports are generated asking for additional information such as screening or audiologic evaluation reports and/or parent phone number.

When Sound Beginnings receives a report that a child has been identified with hearing loss, the physicians, parents and early intervention programs are contacted to ensure that services and resources are available.

The biggest obstacle for Sound Beginnings Early Hearing Detection and Intervention (EHDI) is the percentage of Loss-to-Follow-up (LFU) and Loss- to-Documentation (LTD).  Loss-to-Follow-up is defined as any infant who did not receive or complete the recommended birth admissions screen, diagnostic or early intervention process.  This includes infants who are in process, parent declined services, infants who have moved out of jurisdiction, infants who are nonresidents, parents who cannot be contacted and parents who are unresponsive or unknown.  Loss-to-Documentation is defined as infants who did not pass their hearing screening and whose diagnostic or intervention status has not been reported to the state EHDI program following screening, following diagnosis or following referral to early intervention.  Barriers to LFU and LTD are diagnostic providers not scheduling appointments, parents not scheduling or not keeping appointments, providers not submitting results, delayed diagnostic authorization and a small number of qualified pediatric audiologists in Kansas.

Other professionals need to be aware that hearing loss is the most frequently occurring congenital disorder found in newborns.  In 2008, as many as 150 infants in Kansas will be born with some degree of hearing loss.  Early hearing detection is highly effective in facilitating a child’s development when intervention and treatment begins before six months of age.  Newborn hearing screening makes a difference for all children and their families.  It is important for parents to be sure that their baby has normal hearing.  The first six months of life are the most critical for speech and language development.  It is our role as professionals to be those forces that guide and assist families to access and receive the best care possible for their children.