Guide Late Onset Hearing Loss: A Parents Perspective of What to Do When Your Child is Diagnosed

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Children with hearing loss can have delayed language and speech 1, children are impacted by hearing loss, with cases being diagnosed between Parents are usually surprised when their child is born with this type of . View Details.
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There is also a group of patients who have later-onset hearing loss, despite passing the UNHS. Hence, these patients have a later diagnosis of hearing loss, leading to a later intervention and potential increased speech and language delay and cognitive and social skill impairment. At our institution we use paid technicians who are trained in administering the UNHS.

However, at other institutions it can be performed by a variety of individuals, such as floor nurses, volunteers, or patient care technicians, who are not experienced audiologists. This may lead to incorrect performance of the test, as well as misinterpretation of the results. If these results are not adequately documented or interpreted, then they may be relayed to the parents incorrectly.

In addition, given the overwhelming experience of hospital childbirth, parents may often overlook the hearing screen results or not fully understand the results. The UNHS can also produce false-negative results.

Hearing Loss in Children With Asymptomatic Congenital Cytomegalovirus Infection

For instance, patients with auditory neuropathy spectrum disorder may initially go undiagnosed as having hearing loss. They may have normal hearing; however, their word recognition is poorer than expected, and their acoustic reflexes, both ipsilateral and bilateral, are either absent or elevated. These children may also have normal cochlear function but a neural hearing loss. There were 3 patients from our study with this disorder. There is a higher incidence of neonatal intensive care unit graduates with auditory neuropathy spectrum disorder. Current JCIH recommendations are that neonatal intensive care unit babies admitted for more than 5 days must be screened with the ABR test only, since neural hearing loss may be missed with OAE screen.

Patients with an enlarged vestibular aqueduct are reported to have hearing impairments that can be fluctuant and progressive. The onset of hearing loss for these patients ranged from 2 years 6 months to 7 years 7 months, and the severity ranged from mild to profound. There was no noted inciting event for hearing loss in these 8 patients in our group. Their ototoxic effects may have started to take place after the UNHS was already performed. Unfortunately, we do not have the exact timing of each hearing screen to evaluate if the patient had received antibiotics or had infections prior to the administration of the UNHS.

In these cases, patients may have been born with normal hearing at birth and at the time of the test. Also, the incidence of cytomegalovirus infection CMV is 0. They found that late-onset hearing loss occurred throughout the first 6 years of life in approximately Some of our patients may have had CMV with a later onset of hearing loss; however, we do not have these laboratory results to confirm this.

Some of these patients may have been missed at the initial testing, while for others, the hearing loss may have progressed over time. Because the UNHS has been seen as a highly effective screening tool, patients with hearing loss despite passing may be overlooked. Parents, pediatricians, and family physicians may have a false sense of security from a normal hearing screen result and may overlook signs of hearing loss. However most of these screenings were performed in preschool, kindergarten, or the first grade.

In our patient population, the mean age of diagnosis of severe to profound hearing loss was 4 years 7 months, ranging from 1 month to 9 years 4 months. It was slightly higher for moderate 5 years 6 months and mild 6 years. If their actual onset of hearing loss of hearing loss was early, these children are not benefiting from early intervention, which is one of the major goals set by the JCIH. The use of additional screens after the newborn period remains to be investigated. Costs and the utility of screening results have to be considered before universal implementation of such programs.

Currently, most schools have a screening system in the beginning of each year starting in preschool. However, this would mean that children could potentially go undiagnosed until they are 4 years of age. An earlier screen at the 3-month wellness visit is currently being studied in our institution. We hope that this will help to identify the remainder of the hearing loss population and provide hearing supplementation for them.

It may also serve to identify infants who were lost to follow-up. Along with standardizing the equipment, we believe that it is important to also have a regimented training program for anyone who is to administer the test so that they understand not only how to perform the test but how to interpret the results and discuss the results with the family. Our study had some limitations as a retrospective medical chart review.

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We were not able to confirm the UNHS results; most of these data came from parental report to the audiologist and pediatric otolaryngologist and were recorded in the patient medical chart. These data would have been useful to further analyze if there was more false-negative results noted with either testing modality.

This low number also raises the possibility that the child actually did not pass the screen and the family had misinterpreted the results. Regardless, the delayed presentation to our tertiary medical center was based on the family's and primary care physician's understanding that the child had passed the newborn screen. In addition, not all patients had laboratory, genetic, or radiographic testing performed. Only 39 patients underwent genetic testing, and 67 patients had a computed tomographic scan, while 50 received magnetic resonance imaging.

If we were able to obtain these data uniformly in each patient, we may have been able find a cause in more of our cohort. Also, because these patients were referred to our tertiary care center from several hospitals, we were unable to get an accurate percentage of patients who passed their UNHS and were later diagnosed as having hearing loss, since we do not have the data for all the patients who had undergone the screening and their results.

Hearing Loss in Children With Asymptomatic Congenital Cytomegalovirus Infection

In conclusion, this is the largest study to characterize children with hearing loss who initially passed the UNHS. Although the UNHS has been instrumental in diagnosing hearing loss in newborns and allowing for earlier intervention, it has its limitations. This study highlights the importance of recognizing the possibility that children who passed the UNHS may have hearing loss. Parents and medical care providers should recommend further audiologic testing in children with speech and language delay regardless of passing the UNHS. Further studies to investigate the use of additional hearing screens are required.

Hearing loss in children

July 25, ; final revision received October 7, ; accepted October 23, Drs Dedhia and Chi had full access to all the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis. Though this book was primarily intended for parents, it would also be a terrific resource for educators, therapists and students working with children with a hearing loss and their families.

It is just the right blend of information, support and personal experience. I will gladly recommend this book to the parents of newly diagnosed children at the Center for Hearing and Communication. My gratitude to Krysty for shining a light on the topic of late- onset hearing loss and providing hope to parents everywhere.

While most books focus on children who were diagnosed as infants, Krysty manages to capture the emotion of having a child diagnosed at some point after that and provides practical guidance, information, and support. As a professional in the field of educating children with hearing loss for more than 20 years I have had to balance the very real and deep emotions a family experiences with the urgency of critical decisions that need to be made for their child.

For the parents who read your book it will be a different story.