On May 9, 2007, a gathering of audiology and other medical experts gathered in Washington, D.C. to discuss the gap between hearing impaired newborns and the care infants receive in their earliest stages of development.
Dr. C. Everett Koop, former U.S. Surgeon General, joined experts from several hearing health organizations including the Alexander Graham Bell Association for the Deaf and Hard of Hearing (AG Bell) and the National Center for Hearing Assessment and Management (NCHAM). Also attending were representatives from the U.S. Department of Education and the American Academy of Pediatrics. The topic? How to bridge the gap between early detection of hearing problems and the need for follow-up care for infants with hearing impairment.
The Early Effects of Infant Hearing Loss
The effects associated with infant hearing loss are significant. First, the child's language development will be delayed due to the lack of hearing. Children learn to speak through hearing words spoken. This, in turn, can lead to slower rates in the development of other cognitive skills. Often, these children lag behind their peers in learning skills, problem-solving skills and even basic social skills.
And while improvements have been made since the 1999 passage of the first Early Hearing Detection and Intervention (EHDI) legislation at the federal level, the numbers show that theres still a long way to go in seeing that newborns receive the treatment and therapies they need to effectively address the issue of infant hearing impairment.
A Widespread Problem?
Indeed, it is. Hearing loss is the #1 most common birth defect. Few people outside of the pediatric hearing community know this, which may be part of the reason the gap between detection and treatment of hearing loss receives so little attention in the media and even among some advocates for the hearing impaired.
The figures are startling. Approximately 33% of all babies who fail newborn hearing screening never receive a confirmed diagnosis of a hearing impairment. This leaves the parents of these children unsure of how to proceed, where to turn for help and what treatments are available for their child. The data, compiled by AG Bell and NCHAM, further indicate that many children receive virtually no follow up care because the parents never receive a confirmed diagnosis of hearing loss.
There is some good news, here. Prior to the passage of EHDI laws in 1999, 50% of babies who failed the newborn hearing test never received a confirmed diagnosis of hearing loss. Today, that number has dropped to 34%. And while this certainly does show improvement, more than one-third of newborns who fail that first hearing test do not receive follow up care. However, many speakers held out hope for more significant improvements in those numbers by pointing out the steps that have already been taken.
Dr. Karl White, Director of NCHAM, put it this way. Since the first federal EHDI legislation was passed, states have placed increased emphasis on better coordination with existing early childhood programs, greater involvement from primary health care providers and more resources devoted to educating families about the importance of identifying hearing loss as early as possible. Dr. White went on to encourage the reauthorization of EHDI legislation currently under consideration by both the House and Senate to ensure [this] positive trend continues.
- Other positive trends reported at the symposium include a decrease in the time required to diagnosis and confirm infant hearing loss from 30 months to just three months.
- 40 states now have EHDI laws on the books, up from just seven states a decade ago.
- 95% of newborns are now screened for hearing loss at birth.
And while these are all positive trends, hearing health and pediatrics professionals must continue their efforts to educate the public, new parents in particular. One less-than-positive statistic released by AG Bell indicates that 23% of infants who receive a confirmed diagnosis of hearing loss still don't receive referrals to specialists for treatments that could help these youngsters significantly.
Dr. Karen Youdelman, President of AG Bell, stressed the continued urgency of early treatment. We have made tremendous progress, yet most parents still are not prepared for hearing loss, or aware of the options for addressing it.
There is no time to waste, Dr. Youdelman continued. We have a responsibility to make sure families know that children begin to learn language by hearing it first and that the first few months of a baby's [hearing] life are the most important.
Educating parents was also a theme central to the conference. AG Bell currently works through its local chapters to increase the awareness of parents of just how serious and widespread the problem is. The goal of this advocacy group is to educate pediatricians, hospital staff and parents about the importance of early diagnosis and treatment, which should begin within weeks of the hearing impaired child's birth.
Clearly there are solutions. However, there are also logistics problems in communicating between pediatrician, hearing professionals and parents.
Logistics and Communication
This logistics problem was addressed by Dr. Frank Aiello, MD, FAAP and member of the American Academy of Pediatrics Task Force on Improving Early Hearing Detection and Intervention. Dr. Aiello stated that The American Academy of Pediatrics is proud to do its part to raise awareness of childhood hearing loss. We are committed to working with other organizations to ensure that families understand the full range of language and educational opportunities available to their children. This is precisely the kind of communication that must take place between pediatricians, parents, educators, audiologists and related healthcare professionals. It will require a coordinated effort to overcome the logistics involved in connecting these very young patients to sources of therapy and treatment.
The technology is there. The treatments are available and even subsidized when necessary with financial aid grants from AG Bell and other hearing health organizations. It's a matter of follow-through once a confirmed diagnosis of hearing impairment has been determined.
Past U.S. Surgeon General C. Everett Koop summed up the problem nicely. The options for children with hearing loss are much greater now than ever before, but we need to do better at making the options available to them. Children with hearing loss can achieve academic success on par with their hearing peers, but they need access to early diagnosis and intervention and the help of advanced hearing technologies and speech and language training.
It's not for the lack of technology, or a lack of awareness on the part of pediatric doctors. The flaw is in a system that allows more than 23% of all children diagnosed with hearing loss to fall between the cracks without referrals to early intervention services. To rectify the flaw, the pediatrics community must continue to work closely with hearing health professionals and families to ensure that our children receive early diagnosis and treatment of hearing loss.