Maggie’s Story–A Tale of Early Hearing Detection and Intervention The Newborn Infant Hearing Screening and Intervention Act, which Congress passed in 1999, offers up to three years of federal funding for states to develop early hearing detection and intervention (EHDI) programs. At this juncture, 33 states across the nation mandate newborn hearing screening. In Maryland, where the author resides, ... Features
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Features  |   May 01, 2001
Maggie’s Story–A Tale of Early Hearing Detection and Intervention
Author Notes
  • Kristen Meier, and her husband, Gerry Gray, are both statisticians who live in Silver Spring, MD. Maggie is their first child. There is no history of hearing loss in either family.
    Kristen Meier, and her husband, Gerry Gray, are both statisticians who live in Silver Spring, MD. Maggie is their first child. There is no history of hearing loss in either family.×
Article Information
Hearing Disorders / Special Populations / Early Identification & Intervention / Features
Features   |   May 01, 2001
Maggie’s Story–A Tale of Early Hearing Detection and Intervention
The ASHA Leader, May 2001, Vol. 6, 6-11. doi:10.1044/leader.FTR1.06082001.6
The ASHA Leader, May 2001, Vol. 6, 6-11. doi:10.1044/leader.FTR1.06082001.6
The Newborn Infant Hearing Screening and Intervention Act, which Congress passed in 1999, offers up to three years of federal funding for states to develop early hearing detection and intervention (EHDI) programs. At this juncture, 33 states across the nation mandate newborn hearing screening. In Maryland, where the author resides, the EHDI program went into effect in July 2000, with birthing hospitals giving all newborns a hearing screening that is covered by health insurance. As a parent, the author describes her experience of early identification, and suggests how EHDI programs could be more sensitive to the needs of families.
We are grateful for newborn hearing screening. Because of it, we found out early that our daughter, Maggie, has a severe to profound bilateral hearing loss. Early intervention worked for us because of some very dedicated and caring health care providers, but we feel that the “system” needs to work better. Here are our experiences and frustrations with newborn screening and early intervention.
When Maggie was born in March 2000, newborn hearing screening was not yet mandated in our state, Maryland. We were fortunate that our hospital happened to have newborn hearing screening in place. When Maggie was just a day old, she received an otoacoustic emissions test (OAE), but failed. The next day, Maggie was retested and failed again.
The technician asked about my pregnancy and delivery, which were both normal. After some brief reassurances, she told us we needed to get Maggie retested again in one month to be sure there were no serious problems. She scheduled the appointment and gave us a sheet of paper with some information.
The information was minimal. It told us that Maggie failed the hearing screening. It told us that possible causes include a blocked ear canal, fluid, or a hearing problem, and that most babies pass the one-month rescreen. It suggested some hearing and speech-language activities.
At this point, my husband and I began to wonder what this all meant. We asked the technician: How does the OAE test work? What does it really measure? How accurate is it? What are the chances of more serious problems? But the technician couldn’t answer our questions. Fortunately, the audiologist in charge of the screening program happened to overhear our conversation and offered his help and expertise.
This audiologist was incredibly helpful. He explained how the test worked, what it was really testing, and what the chances were for more serious problems. He indicated that, from his experience, 80% of infants pass the one-month rescreen. I focused on the 20% who don’t. I asked what the odds were of a serious problem if she failed at one month. He said that of those that fail the one-month rescreen, 50% usually have a “correctable” problem. The other 50% could have varying degrees of problems.
But he also told us that, even in the worst case of hearing loss, technology was such that there was a lot they could do for kids if they get intervention early. He told us about newborn screening, hearing aids, FM systems, and cochlear implants. He gave us his card, and said we could call him any time with questions. We felt fairly optimistic that everything would be fine, but we thought this information should have been available in writing.
Maggie at 1 Month
When Maggie was 1 month old, we went in for her rescreen. We both spent that month trying to reassure ourselves that nothing serious was wrong. We were stunned when Maggie failed again. The audiologist conducting the test handed us a sheet of risk factors for hearing loss and asked if any were applicable. None were. My husband tried to ask a few questions. Again, we wanted to know the chances of more serious problems. This audiologist was unable to answer our questions. After the test, we sat together in our car and I cried. All I could think was that I would not be able to share my love of music with Maggie.
An automated brain stem response test (ABR) was scheduled for Maggie a month later. We were given a sheet of paper that told us that failing the screening does not mean a child has a hearing loss, but to be sure we were being referred for this diagnostic test called ABR. In the mail, we received information explaining the ABR and what to expect, which we found very helpful.
At 2 months, Maggie went for her ABR test. Preparing for the test was difficult because we could not let Maggie sleep or eat several hours before it. When the testing was completed, we met with the head of the Evoked Response Lab (in neurology). He told us results suggested that Maggie had a “bilateral profound hearing loss with a mixed etiology.” He said he would send Maggie’s audiologist a report and send us a copy in the mail. Fortunately, we also asked him to send a copy to Maggie’s pediatrician.
We didn’t know what a profound loss meant or what a conductive versus sensorineural loss meant. The head of the Evoked Response Lab was very knowledgeable and explained all these terms. He also explained a little about the audiogram and the speech banana. We understood that Maggie’s problem was serious, but we didn’t really know what else to ask or what to do next. We were overwhelmed. When we got home my husband was unable to talk about it, and cried to think that his daughter would never hear the sound of his voice.
At this point, we think we should have been provided some written information such as that in AG Bell’s [the Alexander Graham Bell Association for the Deaf and Hard of Hearing] “So Your Child Has Hearing Loss: Next Steps for Parents.” I eventually got this wonderful booklet by contacting AG Bell.
The biggest potential breakdown in the early intervention process was prevented by our exceptional pediatrician and audiologist. For the next two weeks, we did nothing, alternating between denial and despair. We just kept waiting for the results in the mail. We thought someone would call us and tell us what to do next. Fortunately for us, someone did. The day he got the results, Maggie’s pediatrician called us and asked us what we were doing about Maggie’s hearing loss. We told him we didn’t know what to do next.
Our pediatrician gave us the phone numbers of several pediatric ear, nose, and throat (ENT) doctors. We called around to make an ENT appointment. The next available one was three months later! Upset about the time, we called our pediatrician back. He called the head of audiology for us to see if we could get something sooner, and to discuss who would coordinate what needed to be done next.
The head of audiology (the same helpful audiologist we met at the screening in the hospital) managed to get us an ENT appointment within a month and a half. He also rush-ordered programmable hearing aids for Maggie and had her fitted with earmolds within a week. He told us that getting Maggie hearing aids as soon as possible (ideally before 6 months) would make a tremendous difference in her speech and language development.
To our surprise, we did not have to pay for the hearing aids-the screening/intervention program had money to cover the cost. Most parents aren’t nearly as lucky. We can’t imagine having to come up with thousands of dollars for hearing aids. Our health insurance (which is considered to be a good plan-and certainly not the cheapest) does not cover hearing aids or audiological services.
Maggie at 3 Months
At 3 months of age, Maggie had hearing aids. But there were still problems. The earmolds didn’t fit well, causing almost constant feedback. It’s hard to get a good fit with infants, and they grow so fast. The two-week turnaround time for new earmolds seems unacceptably long. Keeping the hearing aids in was also difficult-and some days seemed impossible. Maggie loved to pull them out and chew on them. Despite our frustrations, we were very encouraged because Maggie definitely vocalized a lot more when the hearing aids were in. So we kept putting them back in, again and again.
We found out about our local school district’s parent/infant program from the audiologist when Maggie got her earmolds. We were also told about ASHA, AG Bell, and a book called Choices in Deafness.
The parent/infant program in our county is fabulous. They provide us all sorts of free information and resources, including weekly home visits and school visits. They also connect us to other parents in similar situations and to older students in the program, which we find invaluable. Most important, they are very much in touch with our daily struggles. We feel connected to a well-organized, helpful system.
At 4 months, Maggie got a complete ENT exam, a CAT scan, and a whole battery of tests, including genetic tests. In a one-minute conversation with the doctor over the phone, we were told everything came out normal. We never met with the ENT doctor to discuss the results and we never received a written report with the results. To this day, I am not sure what tests were done. This is an area that needs improvement.
Maggie at 6 Months
At 6 months, Maggie had her first behavioral hearing test. She has had several since then. Recent results indicate a severe (possibly moderate) to profound loss. These results are much more promising than the original ABR. In fact, we have learned that hearing loss is often not as bad as the early ABR indicates. Parents need to know this early on.
At this point, we have also enrolled in another excellent parent/infant education program at a state school for the deaf (also free and emphasizes use of American Sign Language [ASL]), which complements the local program we are in.
We count ourselves very fortunate-for newborn hearing screening and for the caring, proactive, and knowledgeable people who have helped us along the way so far. We know we still have lots of decisions ahead. But we also are comforted knowing that we have lots of help and support. And we have our beautiful daughter, who has just celebrated her first birthday, and who has and will continue to surprise us.
Other parents and children have not been as lucky as we have been. One of the fathers in my ASL class told me that his son, now 8, was diagnosed with retardation when he was 3. In fact, his son’s only “problem” is a severe hearing loss. Newborn screening was not available when his son was born. Another parent told me her daughter was picked up at newborn hearing screening, but did not get hearing aids until almost 7 months because of delays in getting appointments. None of her health care providers told her about parent/infant programs. Instead, she found out through her older daughter’s teacher.
Thanks to the hard work of so many different professionals, newborn hearing screening and early intervention are a reality for a lot of people. The system still needs work, though, and we have some suggestions for how health professionals can make it work better. We hope that newborn hearing screening and the crucial transition to an effective early intervention program will soon be an automatic process. We believe that, because of their many points of contact with the patients, audiologists are a key link in this process.
How Audiologists, Pediatricians, and ENTs Can Improve Newborn Hearing Screening and Early Intervention for Families
  • Develop written information explaining what the newborn hearing screening test is, how it works, and how accurate it is (in terms of percentages).

  • Provide statistics on the chances of hearing loss given failure of various stages of testing.

  • Explain what early intervention entails and why it is important.

  • Compile a list of all local parent/infant programs (including public and private programs for all communication options-provided in American Annals of the Deaf every year in April); meet with teachers and parents in these programs in your area and find out what really goes on.

  • Provide parents with a written report of what tests are performed, why they are performed, and the results.

Resources
  • AG Bell-get copies of “So Your Child Has Hearing Loss: Next Steps for Parents” and Choices in Deafness, edited by Sue Schwartz (202-337-5220; 202-337-5221 (TTY); www.agbell.org)

  • Free video, “Dreams Spoken Here,” through Oberkotter Foundation-a documentary about deaf children learning to talk (877-ORALDEAF; www.oraldeafed.org)

  • American Society for Deaf Children-non-profit parent organization, greater focus on use of sign language (800-942-ASDC; www.deafchildren.org)

  • ASHA (800-638-8255; www.asha.org)

  • National Institute on Deafness and Other Communication Disorders, National Institutes of Health (800-241-1044; 800-241-1055 (TTY); www.nidcd.nih.gov)

  • Other parents who have gone through what you’re going through

Tips for Parents
  • Call your local school to find out what early intervention parent/infant programs are available in your area. Contact these programs as soon as possible. (AG Bell has a directory of auditory-oral programs in the United States and Canada. The American Society for Deaf Children will provide assistance as well.)

  • Get hearing aids as soon as possible. Ask your audiologist about loaner hearing aid programs.

  • If the earmolds give constant feedback, immediately get fit for new ones. Most have a three-month warranty, so you won’t have to pay for new ones within three months.

  • Get a behavioral hearing test as soon as your child seems ready (probably no later than 6 months old). Get it from someone with lots of experience working with infants (vs. kids or adults).

  • Have copies of all test results, as well as audiologists’ and doctors’ reports sent to you and your pediatrician.

  • The Individuals With Disabilities Education Act (IDEA) guarantees every child with a disability a free and appropriate education. Familiarize yourself with the special education services in your area.

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May 2001
Volume 6, Issue 8