Transcript
ANNOUNCER: Welcome to the American Speech-Language-Hearing Association's Podcast Series highlighting issues in the field of human communication.
JOE CERQUONE: We have two guests today on ASHA Podcast. Mary Pat Moeller, PhD, directs the Center for Childhood Deafness at Boys Town National Research Hospital in Omaha, Nebraska. A particular interest of Dr. Moeller's is hearing aid use in infants with early identified hearing loss. ASHA's June 2009 American Journal of Audiology has a study on the topic that was done by Dr. Moeller and others. Our other guest is Jennifer Johnson. Jennifer's daughter Danielle, who is now three, was diagnosed as an infant as needing a hearing aid. Jennifer joins us to share some of her first-hand experience with that situation. Welcome to both of you.
JENNIFER JOHNSON: Thank you.
DR. MARY PAT MOELLER: Thank you.
JOE CERQUONE: Dr. Moeller if I could start with you please?
DR. MARY PAT MOELLER: Yes.
JOE CERQUONE: If you would, set the stage a bit, how many infants wear hearing aids and what is the estimated total number of infants who may need them?
DR. MARY PAT MOELLER: Well it's estimated that two to three infants per 1,000 are born with some degree of hearing loss. In more practical terms that means that every day in the United States 33 babies are born with hearing loss; that's about 12,000 a year. It's actually one of the most frequently occurring birth conditions in infancy, and I would say that the majority of these infants will need hearing aids and its typical practice for babies to be fit with hearing aids on both ears. We have a national goal to fit hearing aids before six months of age, if possible, in order to promote optimal language development in these babies.
JOE CERQUONE: How key is the use of the hearing aids to their language development?
DR. MARY PAT MOELLER: Oh, it's absolutely essential. When babies are listening in those first years of life their ears and their brain are actually tuning into language learning. It sets the foundation for speech and language learning and so optimally babies will wear their hearing aids consistently so that they can have access to this rich language exposure from their families.
JOE CERQUONE: Well the research that you've done is very interesting. I'm curious as to what prompted you to do it in the first place and exactly what did it consist of?
DR. MARY PAT MOELLER: Well I work in an Infant Language Development Laboratory at Boys Town Hospital and we do observational studies of mother/child interaction and how communication changes over time. And we actually watch two groups of infants, babies with normal hearing and babies who happen to have hearing loss; this is a grant from the National Institute of Deafness and Communication Disorders.
Well as I was watching these babies in the laboratory I noticed that some of them wore their hearing aids just fine and others seemed to pull them out constantly creating challenges for their mothers in helping them adjust to hearing aid use. And I realized that there were certain ages where this was happening more often, so I became pretty curious about what factors were influencing consistency of hearing aid use in these families. And I know that in the clinic we encourage mothers and fathers to have their babies wear their hearing aids their full waking hours, but as I watched it seemed like there were a lot of barriers to this goal for some families so I wanted understand these barriers better so that we might refine the ways that we're guiding families.
And so what we did was to design a structured interview, and this was administered to our families four different times between ten months of age and 28 months of age. We had seven families and their infants had mild to moderately severe hearing loss, and each of those families participated in four separate interviews over time. This interview asked them a lot of different questions about parental factors, some of the child factors, and then some of the situations that created challenges for them around hearing aid use.
JOE CERQUONE: When you had completed your research, Dr. Moeller, what essentially had you learned?
DR. MARY PAT MOELLER: Well we learned a lot. There were a few families in the study who were able to establish early hearing aid use and it was very consistent across the whole period. But I have to say with most of the families it didn't go that smoothly. And what was interesting is some of the challenges seemed to come at specific ages.
As a concrete example, around 12 months of age children, well they're pretty curious first of all and also, they seem make this discovery that as soon as I pull this hearing aid out it gets my mom and dad's attention; they'll come in the room.
JOE CERQUONE: Right (chuckling).
DR. MARY PAT MOELLER: Exactly.
JOE CERQUONE: Yeah.
DR. MARY PAT MOELLER: So it seemed like curiosity and temperament of the infant was playing a role. Around 16 months several families who had been doing fine experienced this dip in their infant's hearing aid use, and it coincided often with the onset of tantruming behavior, so we saw that child behavior was one factor. Another challenge seemed to be related to children's state. If they were recovering from an ear infection, for example, it was trickier to reestablish consistent hearing aid use because the baby had experienced pain in their ear.
JOE CERQUONE: Right.
DR. MARY PAT MOELLER: And then there were other situations that were tricky, daily situations. For example, riding in the car is very challenging for many families. Think about it, babies are now strapped in in the back seat that can create feedback or whistling from the hearing aid. Also, the babies are back there unattended and they tend to grab the hearing aid and get it into their mouth which is simply dangerous. And so parents have some very realistic concerns about safety in the situation of car rides. Also, we've discovered that parental adjustment can contribute, particularly for families whose babies have just a mild hearing loss, those babies respond to sound even when the hearing aid is not on. And so for these families it can take a little time to understand why it's so important to enforce consistent hearing aid use.
JOE CERQUONE: If you would please, before we go any further, if you could just talk a bit more about why it is that consistency of use is so important?
DR. MARY PAT MOELLER: Well, as I was mentioning before, these first two years of life is just a particularly sensitive period for language learning. Infants' brains are wired to learn language and they gain auditory experience just by listening in to the conversations that are around them, and that is an important foundation for later speech and language learning, so bilateral hearing aids help to compensate for an infant's hearing loss. And if the baby goes for periods without wearing these hearing aids this nice language exposure around them is going to be reduced or distorted. And so our goal is just to optimize the baby's listening time, hopefully all day long, so that these children can develop speech and language in a natural way just like peers with normal hearing.
JOE CERQUONE: Well to sum up, from your research what did you find to be the leading causes that disrupt consistency of use?
DR. MARY PAT MOELLER: Well I think the main finding was there's not one single cause, there are lots of causes. And this means that as audiologists, as people working with families, we need to be particularly sensitive to what factors individual families are finding challenging. It might be child factors, like I was saying, changes with development; it might be parental factors and how they're adjusting to the child's hearing loss; or it may merely be situational factors. When you're at the grocery store and the child gets curious about the hearing aid or trying to ride in the car, these are unique circumstances that create barriers for families. So my feeling is we need to be a lot better at listening to families and understanding their unique needs around helping the baby adjust to amplification and then addressing those needs.
JOE CERQUONE: Did you find out anything that surprised you?
DR. MARY PAT MOELLER: Uh-huh (chuckling), I sure did. Actually I think I was very naive when I started this work. I thought that well we're getting these babies so early, we're fitting hearing aids at two or three months of age and these tiny infants are going to lay in their crib and their just going to wear the hearing aids and they'll become adjusted and then it will just be a consistent process. And boy was I naïve, (other female chuckling) because I underestimated the curious little baby, the baby that gains an understanding of "oh boy, pull this out everybody comes running". So there are lots of issues of development that make children perhaps not as interested in leaving them in, even when parents are persistent (chuckling).
JOE CERQUONE: Right, right. Well we've been talking about the parents, or rather the children, but what about the parents. In your research what did you find parental attitudes for their children to be and was it a challenge for them just to accept the idea that their child needed a hearing aid and then to be vigilant about their use?
DR. MARY PAT MOELLER: Well I think in the long run each of the parents in this study developed very healthy attitudes toward hearing aid use and so did their children, as Jennifer will be able to tell you. But I think parents had a range of reactions; some took some time to adjust to understanding the need for the child to wear it consistently, and others got onboard immediately and put them on just as they were diapering and left them on. So I think we can expect that people are people and we all adjust differently to challenging circumstances.
But I think the really positive result was all of these parents developed healthy attitudes toward consistent hearing aid use in the long run; some did it more quickly than others but they all eventually got there. I think my feeling is for families it is a process and it's an adjustment process. In the beginning, for some families, it can be really overwhelming and challenging and it's difficult to enforce consistent use if your baby is pulling it out constantly. But I think if we provide families with a lot of ongoing support, that maybe has to change over time, and some concrete strategies, I think also giving them contact with other families who've walked in their shoes, we can set them up to make that healthy adjustment.
JOE CERQUONE: Very good. Well now I'd like to bring Jennifer Johnson into the conversation. Jennifer, again, welcome to ASHA Podcast.
JENNIFER JOHNSON: Thank you for having me.
JOE CERQUONE: If you would please, share just a bit about your daughter, Danielle; how you learned that she needed a hearing aid and what it was like getting one for her?
JENNIFER JOHNSON: Sure. Well she was born in Florida and she failed her newborn hearing test at the hospital four times. She had failed two more hearing tests after that over a three-and-a-half-month period. Her pediatrician at the time refused to send her to an ENT, so we had some trouble there. But we moved to Nebraska the day after she failed her sixth test. I had brought all her test results with us and got her in to see a new pediatrician, that took seven weeks, that doctor, without any hesitation, scheduled an appointment for her with an ENT. That appointment was a week later; she failed that test there as well.
So she was scheduled for an ABR test at Boys Town Research Hospital; she had that done a week later. After that test was complete an audiologist came in and explained that Danielle had sensory neural hearing loss that was moderately severe and bilateral. She explained to us that the next step would be for Danielle to receive a loaner hearing aid to find out if hearing aids would benefit her, and we would switch that back and forth between the ears. She took impressions for ear molds and then two weeks later at six-and-a-half months of age Danielle received her loaner aid. I will never forget the reaction the second it was turned on. Her face, she was scared at first and then that was it, from that point on she didn't want it removed.
JOE CERQUONE: At that point how old was she?
JENNIFER JOHNSON: She was six-and-a-half months old. And you could tell right away that it worked. And then [overlapping voices]
JOE CERQUONE: What was the difference?
JENNIFER JOHNSON: She just - we would - we talked to her. We just said "Hi Danielle" and she looked at us like she never knew we made noise (emotional chuckle). And then seven weeks later, at almost nine months old, she received her own set of two hearing aids.
JOE CERQUONE: What did you or your husband know about hearing aid use before Danielle needed one?
JENNIFER JOHNSON: We really didn't know anything. We knew, of course, that people wore them to help them hear, but we had no idea that babies could or did wear them.
JOE CERQUONE: And where did you first begin or how did you first begin to learn that, in fact, that is the case?
JENNIFER JOHNSON: When we got to Boys Town and it was confirmed that she had hearing loss that was the first time that anyone had discussed that with us.
JOE CERQUONE: So have things continued since that point to be generally positive? Does she seem to have adapted well consistently to having a hearing aid?
JENNIFER JOHNSON: Oh, absolutely, it's been extremely positive. She loves to wear them. They're very beneficial to her. I don't think that she would be doing as well as she is with her speech and language development or her comprehension had she not received them. You know they are a very important part of her life. They are the first thing she asks for when she wakes up in the morning. And she used to cry when we would take them out, but now that she's a little older she understands that there are times when she can't wear them, like bedtime, bath time and other activities that involve water.
JOE CERQUONE: Well I would guess that because of Danielle's situation that that may have put you in contact with families in similar situations, is that the case? Have you met parents with kids who wear hearing aids?
JENNIFER JOHNSON: We have met some, yes.
JOE CERQUONE: What have you learned from them? What are their experiences like?
JENNIFER JOHNSON: Well (chuckling) we don't always talk - it's funny, we don't always talk about their hearing aids, we talk about normal kid stuff (chuckling). But we've all - I think that the common things are the situations like Mary Pat had said. You know Danielle would find hers and they'd make their way to her mouth, and she'd teeth on them and pull them apart and throw one piece here and one piece there, and that seemed to be the common thing that I think all of us parents have experienced.
JOE CERQUONE: So is the lesson that vigilance is really important in making sure that they're consistently used and that your child is wearing them the way they should?
JENNIFER JOHNSON: Right, right. You have to really keep an eye on them (chuckling).
JOE CERQUONE: Right.
JENNIFER JOHNSON: And, yeah, I mean if when the times that she would pull them out, in the car that was one of the biggest and a safety issue as well. So we would always start out, you know because to always try, and obviously at this age we don't have that problem anymore, so she did reach a point where she's past all that. But if she pulled them out in the car we would take them but any other time, like tantrums, if she would pull them out we would put them right back in, you know we didn't let her have that control.
JOE CERQUONE: I see. Well Jennifer looking back, starting with when you first began to learn that your daughter had a hearing loss problem and just going forward to getting the hearing aids and then her wearing the hearing aids, over time what have you found to be the most helpful resources for you?
JENNIFER JOHNSON: Well first and foremost information from the pediatrician and the hospital. In the beginning we received a huge packet of information here in Nebraska. And I think it's important to have that in writing to refer back to; I still refer back to mine.
You know parents are dealing with so much emotionally and with appointments when their child is first identified that it might take some time before they can focus clearly, and having that on paper makes it so much easier than trying to remember what someone said. And the information we've got has things that Danielle will be able to access throughout her life.
And a well informed network of professionals, including doctors to answer many questions, and often repetitive questions (chuckling). Service coordinators, you know they've put us in touch with services available to us in our area, they help advocate. The public school system has been really good for support and direction, new ideas, lending materials.
And the best resource is other parents of deaf or hard of hearing children and other adults who are deaf or hard of hearing. You know who better to listen and understand than someone who has either gone through or is going through what we are. And the Internet, that is a really good resource. There's so much information out there. I'm always finding something new. Like www.babyhearing.org, www.handsandvoices.org, www.cdc.gov, and Googling EHDI, the EHDI information, they're wonderful places to start.
JOE CERQUONE: Okay. Well you touched on something that I just wanted to explore a little bit, and that is that it must be challenging for parents to first learn that there's a challenge with their child's hearing. What is your advice, as a parent who has gone through that, to other parents who may be listening to this and in an early stage of dealing with that kind of situation?
JENNIFER JOHNSON: I'm sorry. Could you repeat the question, I'm sorry?
JOE CERQUONE: How is it - well what's the best way, in your opinion, for parents to deal with learning about the fact that their child has hearing loss?
JENNIFER JOHNSON: Okay, I'm sorry.
JOE CERQUONE: What helped you? What do you - well what's the best piece of advice that you could give them?
JENNIFER JOHNSON: Just breath (chuckling) and it will be okay. It is hard to accept and hard to realize but there is a lot of help out there and a lot of different strategies, and if one doesn't work for you and your family try another one. And you know don't think that you have to do it a certain way because that's what someone tells you, you have to find out what works best for you and your family and your child. Every child is different, and that is whether they have a hearing loss or not every child is different, and it just makes them part of who they are and it doesn't change that they're your child.
JOE CERQUONE: Dr. Moeller, if I could bring you back into the conversation, what would you advise to the general public that may be in this situation, like Jennifer's, as to the best tips that you could offer to them?
DR. MARY PAT MOELLER: Well I think Jennifer stated it well. I think one of the most helpful things for families to do is make a connection with other families who've walked in their shoes. Try to find a way to meet other families who have babies who've worn hearing aids or toddlers, preschoolers, because they can kind of show you the ropes and they understand the feelings and reactions that follow the diagnosis and, as Jennifer said, they give you a lot of hope that it's all going to be okay.
JOE CERQUONE: Very good. Well before closing, is there anything else that either of you would like to add?
JENNIFER JOHNSON: I would.
JOE CERQUONE: Yes.
JENNIFER JOHNSON: I would like to point out a couple of other resources that I think are helpful, like when it comes to the children pulling the hearing aids out.
JOE CERQUONE: Right.
JENNIFER JOHNSON: There are products, like ear gear and bonnets that the children can wear. And what I found the most helpful for our family is we use a FM system which is little receivers that attach to the bottom of Danielle's hearing aids [overlapping voices]
JOE CERQUONE: Yes.
JENNIFER JOHNSON: …and a family member wears a microphone, and that really helps in the car and when we go places. It allows her a little more freedom to get a little further away and it lowers her frustration level; she's able to hear and understand others better; and it also makes everyday activities, like her story time, being on the computer, listening to the radio and watching TV much more enjoyable.
JOE CERQUONE: Is that, just for the edification of our listens, how complicated is it to have something like that?
JENNIFER JOHNSON: It's actually not complicated at all. You just attach the receivers to the bottom of the hearing aids and you turn the microphone on. And like there are several different ones out there you know. Ours has three settings as to how much around the person wearing the microphone she's able to hear over the regular background noise. And it's been a wonderful tool for us.
JOE CERQUONE: Very good. Well I - go ahead.
DR. MARY PAT MOELLER: I would like to add one point.
JOE CERQUONE: Yes, yes.
DR. MARY PAT MOELLER: I think it's important to recognize that prior to newborn hearing screening children like Danielle were not identified until well after two years of age. And so now that we're able to pick up hearing loss at birth, we're able to work with families in a proactive way with children to try to prevent or reduce the consequences of hearing loss on language development. But my research is suggesting children do better if they wear their hearing aids consistently, that's one of the factors in the mix that's important. So we like to encourage families to persist, even when they meet these little hurdles along the way.
JOE CERQUONE: Well those are excellent points. And I want to thank you both for being our guests today. ASHA members can check out Dr. Moeller's study online at http://aja.asha.org/. She will also have an article in the July 14 ASHA Leader about her study. And the public can find an audiologist in their geographic area by going to www.asha.org/proserv/. Thank you very much.
JENNIFER JOHNSON: Thank you.
DR. MARY PAT MOELLER: Thank you.
ANNOUNCER: Be sure to check www.asha.org periodically for the latest podcast in this continuing series.
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