The Neonatal Hearing Screening in Australia: a National Forum for Consensus and Implementation was held on March 24th 2001 at the Women's and Children's Hospital and was attended by over 110 participants from all states and territories of Australia. These participants were made up of audiologists, teachers of the hearing impaired, neonatologists, paediatricians, ear, nose and throat surgeons, nurses, epidemiologists and parents of children with hearing impairment.

The following facts were presented at the forum and they are certainly food for thought:
 

• Permanent hearing impairment affects between 1 and 3 per 1000 live births.^1,2
• We would expect approximately 500 births in Australia each year of children with significant hearing impairment¹⁰
• Significant permanent hearing impairment, if undetected, will impede, and can have profound effects on speech, language, and cognitive development³
• Selective screening based on high-risk criteria fails to detect at least half of all infants with congenital hearing loss^10,12
• Current international research indicates that babies whose permanent hearing impairment is diagnosed before the age of six moths, and who receive appropriate and consistent early intervention, have significantly higher language levels than those children identified after the age of six months.^4,5 .Of children aged 5 years with permanent hearing impairment, it is estimated that 90% have had the impairment since the neonatal period.⁶
• The average age of diagnosis of hearing impairment in some centres which have implemented universal newborn hearing screening (UNHS) programs is reported to be as low as 3 months.^8,9 The average age of diagnosis of hearing impairment in centres which screen only infants known to have a pertinent risk factor is estimated at 24 months.⁹ Data from Australian Hearing indicate that the median age at detection of children with the most severe hearing impairment (>90dB) is between 12 and 18 months whiled the median age at detection of children with mild hearing loss (,40dB) is around 7 years.

The international guest speakers, Professor John Bamford (Manchester, UK) and Dr Albert Mehl (Colarado, USA) provided the forum with an insight into both the British and the American experience.

The American model was one in which a number of hospitals within Colorado commenced neonatal screening  (4/60 hospitals in 1992) with a roll out process over time such that by 2000 all 60 hospitals in Colorado where screening newborns for hearing loss.

Their model was in a sense "bottom up", in that they started a grass roots program in a small number of hospitals and then moved up through the hospitals until all were involved.

Dr Mehl also presented some interesting figures based on costs. He covered the costs of newborn screening (including the justification of screening in comparison of other routinely screened conditions) and the current special education costs for children with a hearing loss.  Based on those costs, the projections over time are that there will actually be cost savings to government with fewer students needing such intensive special education as there will not be the kinds of language delays currently experienced by children with later diagnosis of their hearing loss.

PHISA has often heard tales of anguish from parents who had to argue with their doctor to test their child's hearing. Dr Mehl told an interesting story which many parents could relate to. He told the story of how he spent some time holidaying with friends and whilst observing their young baby wondered if the child was hearing properly. Not wanting to alarm the parents unnecessarily, he spent the remainder of the time observing this child. At the end of his visit, he was not convinced that the child did have a hearing loss but equally was not convinced that it didn't either. Dr Mehl felt that if he could not make this distinction after observing the child for over 100 hours, he doubted that any doctor could conclusively state that a child had hearing or not after observing the child for a normal consultation which is considerably less than 100 hours!!!

Professor John Bamford discussed his involvement in the "Critical Review for the role of Newborn Hearing Screening in detection of children with hearing impairment". This review was commissioned in 1995 with results presented in 1997.

As a result of the review the National Screening Committee was established in 1998. During 1998-99, the working group established agreed protocols for a screening program.

The British model is a "top down" model whereby the process started with a working group determining agreed protocols, and the involvement of health authorities in the UK.

In June 2000, a pilot involving 20 health authorities was commenced. In this case pilot means first stage of implementation with a further roll of out of services planned. An evaluation team will raise early concerns about potential problems in the pilot screening program so that they may be rectified.

Professor Bamford felt that whilst a "top-down" model was more difficult to organise, it was more likely to assure quality and that quality and seamlessness were key features of any successful screening program.

Dr Melissa Wake added another dimension to the discussion by in a sense playing "devil's advocate". She looked at the data collected from some screening programs performed elsewhere in the world and the rates of newborns that the hospitals managed to screen, the number that were referred for a further screen, the number of babies lost to follow up etc. Her message was clearly that what we must achieve is a high quality truly universal newborn hearing screening program.

Another area Dr Wake highlighted was that of maternal anxiety at finding out about their child's hearing loss so soon after the birth. This seems to an issue that is far from clear in terms of what effect, if any, this news has on the mother. In the final discussion panel of the forum, I actually read a quote from an American mother who found out that her child was deaf through newborn screening. She said, "When I found that my child was deaf, all I had to deal with was the grief that he was deaf. I didn't have to deal with the guilt that he had been deaf for 2 years and that I didn't know about it and I didn't do anything about it."

Speakers from Queensland, Western Australia, Victoria, New South Wales, Tasmania, Northern Territory, South Australia and New Zealand presented the experiences they have had and the various programs running in their own area. There were different models and different ways of implementing individual programs too. In most cases the ability to effectively run and expand the programs were hampered by limited financial resources.

The South Australian perspective was an interesting one.

• Currently there is no universal screening program in SA; targeted testing in neonatal intensive care units at the Women's and Children's Hospital
• Important features/lessons: At this stage for the targeted testing need good infrastructure & support in place from Medical, Nursing, Audiology and Administration.

• Development, implementation and evaluation of a Pilot UNHS program; and
• State-wide roll out of UNHS

Professor Bamford also discussed the infrastructure required to support a Quality Infant Hearing Service. Perhaps the most critical point is that this whole process goes way beyond just screening. It covers screening, continued surveillance, audiology services, family support and of course education services! Early diagnosis is the first step but what comes next is critical. Essentially the program, hearing aid selection procedures, audiology services, education services need to be about evidence based decision making. Some of the things that the program should be

• Family at the centre of all decision making
• Seamless flow of good information
• Parents/carers make informed choices
• The provision of unbiased information
• Multi-agency working group that oversees the program

Alison King from Australian Hearing (Box Hill) looked at the role of Australian Hearing in a newborn hearing screening program. Obviously babies will be screened early, hence behavioural based evaluations of infant's responses both aided and unaided would be required. This is a very specialist role and obviously requires appropriately trained staff. How do you get a 6 week - 3 month old baby to accept and wear their hearing aids? What sort of objective testing is available, what are the implications for equipment requirements? Australian Hearing is obviously working hard towards their preparedness to meet the challenges that a successful newborn hearing screening program will bring to their services.

The forum concluded with a session reviewing the "Australian Consensus Statement on Universal Neonatal Hearing Screening". There was discussion amongst participants about the content and provision of information in the Consensus Statement. This process is currently ongoing and hopefully there will be a Consensus statement to present to the government in the very near future.

References
1. Bamford, J., & Davis, A. (1998) Neonatal hearing screening: a step towards better services for children and families. British Society of Audiology, 32, 1-6.
2. Barsky-Firsker, L., & Sun, S. (1997) Universal newborn hearing screening: a three-year experience. Pediatrics, (99), 6.
3. American Academy of Pediatrics Taskforce on Newborn and Infant Hearing (1999). Newborn and infant hearing loss: Detection and intervention. Pediatrics, 103, (2) 527-530.
4. Yoshinaga-Otano, C., Sedey, A., Coulter, D., Mehl, A. (1998). Language of early-and-later identified children with hearing loss. Pediatrics, 102, (5) 1161-1171.
5. Moeller M. (2000). Early intervention and language development in children who are deaf and hard of hearing. Pediatrics, 106 (3) e43.
6. 6. Kuhl, P., & Williams, K. (1992). Linguistic experience alters phonetic perception in infants by six months of age. Science, 225, (5044), 606-608.
8. Arehart, K., Yoshinaga-Itano, C., Thomson, V., Gabbard, S., Stredler-Brown, A. (1998). State of the States: The status of universal newborn hearing identification and intervention systems in 16 states. American Journal of Audiology, 7, (2), 101-114.
9. White, K., Maxon, A. (1995). Universal screening for infant hearing impairment: simple, beneficial, and presently justified. International Journal of Pediatric Otorhinolaryngology, 32, 201-211.
10. Coplan, J. (1987). Deafness: Ever heard of it? Delayed recognition of permanent hearing loss. Pediatrics, 79, 206-214.
12. Mehl, A., & Thompson, V. (1998). Newborn hearing screening: The great omission. Pediatrics, 101, (1).
 

Since the forum there has been a meeting of the UNHS Implementation Reference Group of which PHISA is a member. The Reference Group is a multi-agency group including representatives from Child and Youth Health, Australian Hearing, The Cora Barclay Centre, Public Health Research Unit, Hills Mallee Southern Regional Health Service, Department of Education, Training and Employment, Otology - University of Adelaide, Paediatric Specialist - Lyell McEwin Health Service and PHISA. Other members can be coopted to the group as required.
 

As parents of children with hearing impairment we know only too well the effects of language delays brought about by late diagnosis of severe hearing impairment. What cost can be put on giving a child every chance to reach the potential he/she has within them? Governments allocate funding for a variety of different projects. PHISA is firmly committed to the ongoing lobbying of government to implement a universal newborn hearing  screening program.

You as parents can also play a role in seeing this happen. As we have always said "information is power" and the more people who have that information, the more power there is. Talk to your friends, acquaintances, doctors and of course your local and federal member of parliament. Let them know how important you feel this is and how supportive your friends/family and wider community are of this initiative.
 
 
 

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