Audrey’s Story and an Update on Maggie Our first daughter, Maggie, was born with a severe-to-profound bilateral sensorineural hearing loss (see “Maggie’s Story,” The ASHA Leader, May 1, 2001; written when Maggie was not yet a year old). We discovered this early, thanks to newborn hearing screening. Early intervention worked for us because of some very dedicated ... Features
Features  |   February 01, 2004
Audrey’s Story and an Update on Maggie
Author Notes
  • Kristen Meier, and her husband, Gerry Gray, are both statisticians who live with their children in Silver Spring, MD.
    Kristen Meier, and her husband, Gerry Gray, are both statisticians who live with their children in Silver Spring, MD.×
Article Information
Hearing Disorders / Special Populations / Early Identification & Intervention / School-Based Settings / Features
Features   |   February 01, 2004
Audrey’s Story and an Update on Maggie
The ASHA Leader, February 2004, Vol. 9, 4-38. doi:10.1044/leader.FTR3.09032004.4
The ASHA Leader, February 2004, Vol. 9, 4-38. doi:10.1044/leader.FTR3.09032004.4
Our first daughter, Maggie, was born with a severe-to-profound bilateral sensorineural hearing loss (see “Maggie’s Story,” The ASHA Leader, May 1, 2001; written when Maggie was not yet a year old). We discovered this early, thanks to newborn hearing screening. Early intervention worked for us because of some very dedicated and caring health care providers, but we felt that the system needed to work better.
Our adventure learning about Maggie’s hearing loss continues. With the birth of our second daughter, Audrey, in May 2002, we had another experience with newborn hearing screening. Audrey was born with a profound bilateral sensorineural hearing loss.
Maggie at 1 Year
By 1 year, Maggie had undergone several behavioral hearing tests from two different clinics. Successive tests seemed to show improved responses. One-year results indicated that Maggie had a moderate-to-severe loss. It was still not clear whether there was a conductive component to her loss. All test results were based on the sound field, since Maggie would not tolerate headphones.
In May (1 year 2 months), Maggie’s aids were reprogrammed based on a moderate-to-severe loss. I felt relieved that her hearing loss was not as severe as originally thought. We continued signing and speaking to Maggie, and over the summer, she started signing more.
In the fall, we enrolled Maggie in two excellent parent/infant educational programs. One program was offered through our local public school and focused on auditory training and total communication (spoken English supported with American Sign Language [ASL] signs and cues). The other was offered through our state school for the deaf and emphasized the use of ASL, with speech offered separately. Both programs were free.
With her return to school, Maggie’s signing really took off. By late fall, we felt that Maggie was not progressing with her auditory skills as she had the previous school year. We thought that several recent ear infections might be the explanation.
In December (1 year 9 months) when her infections seemed to finally clear, Maggie had another behavioral hearing test. Again, results indicated moderate-to-severe loss, but Maggie, a bit resistant to the testing, still would not tolerate headphones. We all (audiologist, teacher, us) felt that the results didn’t seem to match her auditory behavior. The audiologist recommended an auditory brainstem response test (ABR). I was resistant because the sedation process seemed traumatic. I wanted another behavioral test where Maggie might cooperate better. So we compromised. We scheduled an ABR and another behavioral test for a few weeks later.
The follow-up behavioral test showed even better results-only a moderate loss! I don’t think anyone at the test believed it, although we all saw Maggie apparently responding. How could she be getting better? Was there a conductive part to her hearing loss that was slowly resolving? Was Maggie learning to master the art of taking a hearing test? Our audiologist insisted on an ABR, and we agreed.
Maggie at 2 Years
One month shy of 2 years old, Maggie had her second ABR. It indicated a profound bilateral sensorineural hearing loss. At some frequencies, thresholds of 85–95 dB were obtained. At other frequencies, no response was obtained. An air-bone gap could not be demonstrated.
We now had behavioral results and an ABR giving inconsistent results. Our audiologist reprogrammed Maggie’s aids based more closely on the ABR results.
My husband and I decided to get another behavioral test for Maggie at a different clinic. Perhaps she would behave differently in a different setting. For a brief period, Maggie finally tolerated insert earphones. However, findings were inconsistent at all frequencies. She gave many false-positive results, making testing a challenge. We kept the aids programmed based on the ABR results.
Within a week after the reprogramming, Maggie seemed to be hearing better. With the new test results, I experienced a second grieving about the severity of her loss.
We decided to hold off on any more testing and work on conditioning procedures at home so that Maggie could learn how to take a hearing test. We even borrowed an old portable audiometer from the public schools to help Maggie get comfortable with wearing headphones and listening for sounds. By now, we could communicate with Maggie using sign language, and we could really explain the test to her and what she needed to do.
At this point, I was expecting our second child in May. We knew things would be hectic once the new baby arrived, so two months after her second birthday, Maggie had another behavioral hearing test. For the first time, she really began to cooperate and allowed us to use the headphones. Results indicated a profound bilateral hearing loss. However, there was a suggestion that at very low frequencies she had only a moderate loss.
We decided to get high-powered digital aids for Maggie. Immediately, we noticed that her new aids didn’t feed back nearly as much as the old (programmable) analog aids. This alone brought a lot of relief.
In the fall, we again enrolled Maggie in two different parent/infant programs from the same two school systems as the previous year. Three days a week she went to the ASL program (including some speech treatment), and two days a week she went to a total communication program for toddlers. She had an additional hour a week of auditory training through the public schools.
With the start of school, Maggie’s signing really took off again. We found it difficult to keep up! Midway through the school year, Maggie’s talking also took off. We decided to add Cued English through the public schools and through a babysitter who is deaf and is a native cuer. Cued English seems to provide Maggie fully accessible spoken English (cueing also can be used with other spoken languages). We hope that the early exposure to Cued English will help her learn English before she learns to read and write it, hopefully making the reading/writing process easier.
Maggie at 3 Years
At age 3, Maggie communicates well thanks to newborn screening and lots of hard work by so many people. She signs and/or speaks, depending on whom she is with. At home, ASL provides us the means to communicate most easily and unambiguously. Maggie also talks nonstop, and with speech treatment and hard work we hope that her speech clarity will improve. Our goal is that Maggie will be bilingual (English and ASL), and multilingual if she desires.
Maggie is now enrolled in a Cued English program through our public schools, and we continue to receive ASL instruction and deaf role models through our state school for the deaf two days a week. We feel that the ability to combine services from complementary programs has been key to Maggie’s success.
I believe that the school systems now face many new (positive) challenges to meet the changing needs of deaf children detected and receiving intervention services from birth vs. those detected years later.
As for Maggie’s hearing, I am still not sure how well she really hears. She certainly gets tremendous benefit from her hearing aids. We still don’t know why she had such good responses on earlier hearing tests. Could it be Maggie “figured out the test,” or does she have some very good hearing at very low frequencies that somehow helped her hear higher frequency sounds? Time may tell. Or it may not.
Audrey was born on May 29, 2002, in the same hospital as Maggie. We had no expectation that Audrey would be deaf since there were no additional risk factors-only a deaf sibling. Before Audrey was born, Maggie’s audiologist contacted the newborn screening team to let them know Audrey’s family history, and gave us a contact name and number for the screening team. We commend our audiologist for this foresight.
At 1 day old, Audrey failed her newborn screening. On day two, she failed again. I grieved for a day, and then counted the many blessings we had with two healthy deaf children.
Because we were already in touch with the screening team, we were able to discuss our plan of action immediately. We did not want to waste any time and wait for the typically recommended one-month re-screen. Instead, we scheduled an ABR. Thanks to the efforts of our audiologist and the screening team, we were able to get an ABR appointment the following week.
At 8 days old, Audrey had her first ABR. There was no response to anything at any frequency. Her loss appeared even greater than Maggie’s.
Although we didn’t know if Audrey would benefit from aids, we still wanted to try. How to program them posed a challenge for the audiologist. Our audiologist was ready to fit Audrey with earmolds immediately. But we weren’t ready immediately. We knew early use of aids was very important, but we also knew the frustrations of dealing with hearing aids and feedback in a baby. We wanted time to get to know Audrey without aids.
Before 2 months, Audrey was using hearing aids (Maggie’s old programmable analog aids). Unlike Maggie, Audrey did not start vocalizing when we put in the aids. Day after day, we put in Audrey’s hearing aids. She seemed to tolerate them most of the time, but she didn’t really seem to respond to them either. It is hard to stay motivated to use the aids when you feel like there is no benefit.
When she was just over 3 months old, we decided to get another ABR for Audrey to confirm (or not) earlier results. The three-month ABR was identical to the one-week ABR-no response.
In the meantime, I received a letter from the Maryland State Department of Health and Mental Hygiene noting that Audrey did not pass the newborn hearing screening. I was very glad to see that the state was following up. The letter noted that the results did not imply Audrey had a hearing loss, but said that a one-month re-screen was important. I think it would be helpful if they added why the re-screen is important. They asked that the results of a re-screen be sent to them, as well as to Audrey’s pediatrician.
I assumed that the screening program would send follow-up results to the State Department of Health, so I never did. Perhaps the results were never sent because Audrey never had a re-screen. I never got to sending it. What (pleasantly) amazed me is that several weeks later, I got a follow-up telephone call from the audiologist with the state’s Infant Hearing Follow-Up Program. Apparently, the audiologist had tracked down Audrey’s ABR results and my phone number through our pediatrician. The audiologist wanted to be sure we were following up and shared additional information with me.
I commend our state program for their aggressive follow-up. Making a personal phone call was much more effective than sending a letter. It is very difficult to keep up with mail with a new baby in the family.
Audrey at 6 Months
About four months after she first got her aids, Audrey started vocalizing when I put in her hearing aids. I couldn’t believe it. I took them out and she stopped. I put them back in and she started again. I tried to see if she could hear any loud noises. She didn’t seem to react. Still, I felt encouraged that maybe she was getting something from her aids, and I was much more motivated to speak to her (in addition to signing) and try auditory games with her. From that point, she consistently vocalized when aided. Two months later, she was turning her head in response to me calling her name.
At 6 months, Audrey had her first behavioral hearing test. Fortunately, she tolerated earphones. Results suggested a profound bilateral sensorineural hearing loss, with possibly some better hearing at very low frequencies. Aided, she definitely showed some response in the moderate-to-severe range. We decided to get her high-powered programmable digital aids.
At 10 months, Audrey had her second behavioral hearing test. Results seemed improved over her first evaluation. In fact, we were all a bit skeptical and wanted a follow-up. The follow-up test two weeks later indicated a severe-to-profound loss. We wondered whether these results were inconsistent with a no response on the ABR. The ABR staff explained that it was not inconsistent since there is a lot of noise with the ABR methodology at such large losses.
Audrey After 1 Year
Audrey started signing early. By 1 year she could already communicate (in sign) some basic wants and needs (more cheese, drink, milk, book, daddy, mommy). Now, at 16 months, she vocalizes much of the time at home, more when aided, but even when not. She loves to copy her older sister signing and playing auditory games.
Audrey and our family get services from three different parent/infant programs. Each one provides invaluable and complementary resources.
Parent Perspective
We continue to learn about our children. We realize that their hearing loss is just a small part of them, although there are moments when it feels huge. We have not ruled out a cochlear implant for either child. We know that a cochlear implant is not a “cure” for deafness, but it may provide more hearing benefit than hearing aids. Whether the potential benefits are worth the potential minuses is a complicated and difficult decision.
We also remind ourselves that our two deaf children will become deaf adults. Deaf adults can provide unique insight into what is important to a child growing up deaf. We have had the privilege of getting to know many successful individuals who are deaf. Some sign, some speak, some cue, some do it all. Newborn screening afforded us time to learn about many different options. We believe it is critical that early intervention programs provide parents information about all options and provide parents access to adults who are deaf or hard-of-hearing with different backgrounds and modes of communication.
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February 2004
Volume 9, Issue 3