All About BAHA – with Abbi Perets Season 2: Episode 21
Welcome back to the All About Audiology Podcast, season 2!
I’m your host, Dr. Lilach Saperstein and I’m very excited that you’re back for more. Season 2 is going to be full of lots of exciting topics and we are starting off the season with an episode on BAHA (Bone Anchored Hearing Aids). If you have never heard of this term, then you will learn in this episode what a BAHA is, who a BAHA is for, and a bit about the process of getting and using a BAHA. I’ll also be including an incredible interview with a woman that I really admire. Her name is Abbi Perets. She is a mom of five, and one of her sons has a BAHA. We are going to talk a little bit about the journey and the experience that she had from her perspective as the mother. I think many of you resonate with that.
I know we have many listeners to the podcast who are students of audiology or speech pathology. I love connecting with students who are so enthusiastic and so inspired to learn. For the two major groups of listeners who are parents of children on their hearing journey and professionals who are eager to learn and work with you: there’s an amazing amount of dialogue going on at the All About Audiology Facebook group. So please come over and join us for extended discussions. That’s what I love about the podcast, it’s not just me talking to you guys, it’s all of us talking to each other and learning together.
So let’s get started with BAHA.
What’s the difference between a regular hearing aid, a traditional acoustic hearing aid, and the BAHA hearing aid?
Well, the acoustic hearing aid, is the regular hearing aid that you see, the BTE, with a mold in the ear and the hearing aid sitting at the top of the ear. That hearing aid is taking in sounds from the environment with a microphone, processing them in the small computer chip that is programmed in the hearing aid, programmed specifically for their hearing loss. And then the output, what’s sent out of the hearing aid, is also acoustic, which means it’s also sound waves, they are amplified and they are processed in a way that’s going to help a person with a hearing loss but it is the same. Acoustic input, acoustic output, sound waves come in, sound waves come out.
Whereas with the BAHA (Bone Anchored Hearing Aids), the input is the same, the input is acoustic waves, sound waves in the environment. Sounds in our environment are going into the microphone and it gets processed in the same kind of programming that goes into programming a hearing aid. How much gain, how much louder should things be made for the person’s hearing loss, but the output is not sent as sound waves, it’s sent as vibrations that are going directly to the cochlea, by way of the skull. Within the skull is the bones of the cochlea, containing the cochlea, that’s how the sounds are able to stimulate the cochlea directly, skipping the outer ear, skipping the middle ear and if there’s a conductive hearing loss where the problem is in the outer or middle ear, then a BAHA might be an option.
If you remember from Episode 5, we talked about the different kinds of hearing loss, and one of the kinds of hearing loss that can be is a conductive hearing loss and this can be microtia or anotia, where the outer ear isn’t formed or open in the typical way. It might be any kind of chronic middle ear infections, or any issue with the little bones in the ears. There could be otosclerosis or cholesteatoma. These are all different conditions that affect the middle ear space, the middle ear bones, making a conductive hearing loss. The hearing inside the cochlea can be functioning properly but sounds are not getting conducted in properly from the outer and middle ear. When this is the case, a traditional hearing aid can be programmed to bring in a lot of sound, to amplify sounds in such a way that it overcomes the conductive hearing loss. It’s making sounds louder just to get them to the cochlea, taking over the job of the conductive portion of our hearing from the outer and middle ear. That’s what a traditional hearing aid would be doing.
There are times when a traditional hearing aid would not be able to be used or isn’t appropriate to be used. Let’s say the ear doesn’t have an opening, or let’s say there isn’t a pinna, the outside part of our ear for a hearing aid to sit upon. Or if there is some kind of medical complication like a cholesteatoma, where the ear needs to stay open and vented and plugging the ear with a hearing aid would not be good for the medical condition of the ear to keep it healthy and aerated. So in any of these cases we can bypass the outer and middle ear and just skip the whole area of the conductive portion and stimulate the cochlea directly with vibrations to the skull. Vibrations to the mastoid. Right behind our ear we have a bony part of our skull, you can feel it with your fingers, kind of sticking out on the bottom and that’s called the mastoid process of the temporal bone, it’s part of your skull and when we vibrate that part of the skull it also vibrates the cochlea.
How can the BAHA stay connected to the mastoid and to the skull? The BAHA device can be anchored into the mastoid bone with a surgical process, either with an an abutment, a small titanium piece, and that way the device, the bone anchored hearing aid, can connect to that abutment. Or by having a magnet surgically implanted under the skin of the mastoid so that the bone anchored hearing aid connects across the skin transcutaneously to the magnet and in that way, be able to transfer vibrations into the mastoid and into the cochlea.
Before one of these surgical options can be done, we do have patients do a trial with a soft band BAHA, a tight headband is used. It needs to be tight because the contact with the bone anchored hearing aid device and the mastoid needs to be close and very tight so it might not be as comfortable but it will give an approximation of how it is to use the BAHA. For children, we don’t do that surgery before at least age five, because the skull and the bones are not yet solidified and hardened. We want to allow the skull to grow to maturity before any surgical process. So children under five would use the soft band BAHA and as they grow, then they may go and have the abutment put in or the magnet put in, so that the BAHA can provide as much of the vibrational energy, as much of the gain and help as it could.
So that’s just a general overview of the BAHA, and I do encourage you to come over to the Facebook group with any questions. Join the All About Audiology Podcast on Facebook where we’ll continue the conversation.
Now it’s time for our interview with Abbi Perets. I hope you enjoy our conversation and I can’t wait to hear what you think.
Here it is!
Dr. Lilach Saperstein: “Welcome Abbi to the All About Audiology podcast. I’m so happy to have you here.”
Abbi: “Thank you so much for having me. I’m excited.”
LS: “Why don’t you start by telling us about yourself.”
Abbi: “Sure. I’m Abbi and I have five children, ages nine and a half through 19 and a half, which is kind of astounding, because in my own head, I’m still 19, so I don’t know quite how that happened. So my first two babies were totally typical little girls and I really felt like I knew what the heck I was doing as a mom. And then I had my third kid which threw everything I thought I knew into question. When he was born, there was clearly something wrong. Nobody could tell me what exactly was wrong, it took a long time, two years until we had a diagnosis of a rare syndrome called Sotos Syndrome that causes physical overgrowth and developmental disability and so that has kind of been a big thing in our lives for the last fifteen years. Then my fourth baby once again was a typical kid. Everything was cool. And then my fifth kid was born and at that point we already had the diagnosis from my third kid, so I was a little more cautious and worried and did lots of testing during that pregnancy and everything came back completely normal. Then my kid was born and I remember looking at the midwife’s face and I was like, “You’re not telling me something…” And she was like, “Yeah.” (laughing) Then she kind of pulled the little hat off of his head and showed me that we were looking at microtia on the right side, but I didn’t know this at the time. Microtia means little ear, literally. And on my son’s right side, his ear is not really a fully developed external ear, it’s kind of a little bit of a nub, there’s no ear canal and we didn’t know what that meant in those first moments after birth.”
LS: “So tell us a little bit about what were your first thoughts and what was going on in your head. You just had a baby and you were obviously tired. Haha.”
Abbi: “Indeed. So I’ll tell you that our primary concern was, ‘What does this mean? Is this literally just some sort of physical thing? Are there bigger implications?’ That was a big question. And remember, we already had a kid with special needs and because we had a kid with significant special needs, we had already done a crazy amount of testing during this pregnancy because I was like, ‘I don’t know how much more we can handle in our family.’ So there was definitely a little bit of that shock factor but our primary concern was what does this mean. I won’t go into the details on this part, but I had three babies that were born at home with midwives. Long story… This kid was one of them. The midwife, given our history and the level of tension in the room, she was like let’s maybe take the baby to the hospital to be checked out. Our midwife had privileges, she also works as an L&D nurse and she had privileges at a local hospital.
So she and my husband went to the hospital with the baby and said they would update me in the next hour what is going on. Basically, when they got to the hospital, and remember this is all second hand information because I wasn’t there, the primary concern was, ‘Has the baby peed?’ Because, again this is one of those things that I didn’t know at that time, but ears and kidneys develop the same week in pregnancy. So when you have an issue with the ears, the first thing they look at is the kidneys. If we had had the baby in the hospital they probably would have taken him for that renal ultrasound in the first 24 hours, but because we were coming in from home, they said, has the baby peed? Yes, so schedule a renal ultrasound through your pediatrician sometime next week, it’s not urgent. It’s important but you don’t have to do it right now. Go home, reunite the baby with his mother and we will deal with this later. So that was a big thing right there. They said you don’t have to worry about that because his kidneys are clearly functional. We should look at them to make sure they are properly developed and they said yeah, it’s true, microtia can be indicative of some larger problem. It could be indicative of some larger facial structural malformation. We don’t know that right now and there’s nothing we would do right now to test that, you’re going to have to wait and see.
Within an hour and a half, my husband and my midwife were back home with the baby. The baby nursed beautifully, everything seemed cool. We had people over the next day who happened to be pediatric specialists in various areas. And they looked at the baby and said, “Yep, that’s a baby and yes, that’s microtia and we can’t tell you anything more than that.” The overarching feeling was, okay, this happened. We had the renal ultrasound a couple of days later and it came back totally normal. So okay, maybe we’ll start to see some facial development issues, maybe we’ll see some issues that indicate some larger syndrome. We aren’t seeing that now so let’s just move forward. I had, like I said, this other kid with special needs which are pretty significant special needs. And again, I didn’t know then as much as I know now.
Now I can tell you that my third child, Adi is his name, is on the autism spectrum, is developmentally disabled, not just developmentally delayed. This is something that’s going to be part of his life, for his whole life. There are some pretty significant issues there, so Amit, my youngest with the ear, we were like, dude, it’s an ear. I don’t have time for this. (both laughing). So this is not going to be a thing that we think about. So literally for years, until about six months ago, when people asked me, I would say I have a kid with special needs. And my oldest would tell me that I have two kids with special needs. The day she said it, I thought she was just trying to be mean to her sister and I was like, ‘that’s so rude’. And she was like, ‘What, Amit has a hearing disability’. And I was like, ‘Oh, I have two kids with special needs. Correct.’ “
LS: “When he was first born, you had the renal ultrasound, that first week or two weeks, did anyone bring up newborn hearing screening? Did they screen his other ear? What was going on with that?”
Abbi: “Yes, that was the other thing. They told us that we definitely should check the hearing in the good ear so that you have a sense of what’s happening. We were very fortunate, in that our neighborhood was a woman who is an audiologist in the neighborhood that we lived in at the time. We called her and she told us to come to her clinic. Don’t schedule through the hospital, it can take time and be more complicated. Just come directly to my private clinic. Let’s get this done so you can sleep well at night. I have to be very honest. Amit is 9 and a half, so I don’t remember all the details of what that felt like going in for the screening and all the details of the testing. I literally do not remember. I know that he passed and they said, ‘You should do this on an annual basis and you want to make sure there is nothing compromising the hearing in the good ear.’ Kids get ear infections and that can affect their hearing and when you have two ears, you can kind of compensate but when you only have one, you want to protect that. That was the big thing that they talked to us about.”
LS: “It’s very typical not to remember all the details when there are other things going on, plus four older kids at home. It’s not like your whole focus was on what was going on. But my question is, do you remember if they ever did bone testing at that time, Bone ABR, on the side with microtia to see the cochlear function behind?”
Abbi: “So what they were able to tell us back then was that the inner ear functioned normally. What they did to determine that, I don’t know, but I know that those were the words that they used. The inner ear functions normally, obviously the external ear is not normal and we can’t tell you all of the details about the middle ear until we do a CT and we aren’t doing that on a newborn because there is no reason to.
We definitely got information and I’m pretty sure that in that first six months, we did some research, and by research I mean, google searches. What are we supposed to do here? Are we supposed to build an ear? Everything that we read said, nobody is going to talk to you until your kid is at least five years old, about any kind of surgery. And if you are interested in a reconstructive surgery, we wait until around the age of 8, because around that time, the ear has reached about 90% of its adult size. And I do remember that we learned that there were different options. There were more cosmetics stuff, and there was trying to open up the ear canal and restore bi-neural hearing (hearing on both sides). Everything that I read about those surgeries (were intense). When they tell you that step one is to open up your child’s rib cage and take out cartilage, I was like, ‘NO, we’re done. That’s not happening.’ And you know, it’s a series of several surgeries and nobody can promise you what the cosmetic result will look like, or that they will be able to restore function. There are a lot of risks involved with that kind of surgery. One of the big risks, and again my information is like nine years old so things may have changed, but one of the big risks that I remember reading about was that if you get a skin graft with hair cells and you start getting these ingrown hairs on the inside, that can be a huge issue.
And I just remember reading this and I thought, if this kid ultimately wants this, he can deal with that when he’s older and it doesn’t have to be like my agony. (laughs) Really from day one, well maybe not day one, but let’s say around day 35, our attitude was we really don’t have time for this. So you’re perfect, God made you this way, we love you, you’re awesome and we’re moving on. So literally, our philosophy, response, strategy, whatever you want to call it was, we aren’t dealing with this because we have other stuff that we need to deal with that seems a lot more important to us right now. (laughs) So I don’t know if that was ultimately great or terrible or what, I have felt both ways at different times and as different things have happened in my son’s life but that’s the reality. We literally did not pay attention to it for many years.”
LS: “What did you start to see as he was developing language and speech? Were those targets?”
Abbi: “So he hit everything absolutely. And my kids are all bi-lingual, they have all grown up in a bi-lingual household, so some of them did start to speak a little bit later, certainly Adi, my special needs kid, really spoke very very late. But even he today is fluent in two languages. Amit was able to develop both languages with no noticeable delays. He was never in speech therapy and it was only when he was in kindergarten that one day I got this fairly desperate phone call from the school that he would be attending for first grade. They told me that they need me in a meeting in twenty minutes to sign paperwork. I was like, ‘What?’ ‘Well you know, Amit is going to need some special services next year, and we need you to come and sign off on them.’ I was like, um what? Do you know something that I don’t know. Like, what are you talking about? They’re like, ‘he has a hearing disability,’ and I was like sure, okay. (both laughing) Literally we had not thought about it and suddenly the kindergarten had transferred paperwork to the elementary school and they had things that they needed to put in place. We were kind of of the philosophy that certainly it’s never hurt a child to have extra services, sure why not. I remember showing up to this meeting, signing the papers and I was like I don’t have a lot of time for this. Can we talk about this in detail some other time. You called me out of what I was doing. I’ll sign the papers.”
LS: “I think a lot of people are crying right now hearing this, saying, do you know how hard I have to work and advocate and fight with the district…And you’re like, oh thanks, services. Thank you. (ha ha) “
Abbi: “I should preface this by saying that I live in Israel and it’s different from the United States. Part of the reason we live in Israel, one factor that we took into account when we moved from the United States to Israel, is that the United States is not a country that focuses on socialist ideals. It’s not a country that’s set up to take care of the weaker parts of society. Israel, because of its’ history was founded on socialist ideals and it’s certainly more of a socialist democracy more than a federal republic and is set up to take care of the weaker parts of society. I was certainly not thinking about Amit when I made the decision, I was thinking more in terms of Adi when we were living in the United States who was in the public school system and I did have to work very hard and beg and cry and throw things to get very basic services and I was very unhappy with them. One of the decisions, one of the factors that we looked at when making our decision, was that it will be easier for us to get what he needs in Israel. That worked out on like 57 different levels and we can talk more about the craziness that my own family has been through the last few years. It worked out well for us, so yeah I totally understand what it is to have to go crazy for services. In Israel, that has not been our experience. So if that’s an option for anyone, you know, think about it! (Laughing) “
LS: “We moved to a different country. (Both laughing)
So until that time, he was like five-ish going on six, so until that time, had you done any additional audio-logic testing, had anyone talked to you about any amplification or anything else?”
Abbi: “Really it was like once a year mostly when I remembered, we would have a hearing test on the good ear. Okay great, looks good. Once in a while, that test would fall out when he had a cold, as children do and they would be like, ‘He has a little compromise on this side, so let’s repeat in six to eight weeks.’ We would repeat and they would tell us it was totally fine. The big thing I remembered doing was telling his nursery teachers and kindergarten teacher every year, ‘When you seat them in a circle, be sure that he’s seated on the correct side so that he can hear you.’ I would tell the teacher about it in the first couple of days of school so that she didn’t notice it and think something weird had happened to the kid.
But so many people literally never noticed the physical piece. To me it was this thing that was very visible and obvious and to the rest of the world it was not. That’s a good reminder I think, no one is ever paying as much attention to us as we are paying to ourselves and our children. I remember having conversations with people and we’ll talk a little bit more about this in a few minutes but when we did ultimately have this surgery done for Amit’s hearing aid, I remember saying that he’ll have the surgery because he doesn’t have an ear on the right side. People were like, ‘yes he does.’ And I’m like, ‘I’m gonna go with no!’ (Both laughing) People were like, ‘Well, I’ve never seen that!’ and I’m like, ‘Well then you weren’t looking, what can I tell you.’ (laughs) And we didn’t want to say, ‘Amit stand here and let people stare at the side of your head.’ Every so often when he was sleeping on the correct side, I’d take a picture and show people and be like, ‘here, there’s no ear here.’ And they’d be like, ‘I never saw that’, and I would be like, ‘that’s your issue not mine.’ “
LS: “Wow, so is his hair covering it a little, or it’s just right there in the open?”
Abbi: “No. People are not looking to catch you out in many, many ways. Like, if you spill something on your shirt, people are not looking if you spilled something on your shirt. If you have an ear that looks weird, people are not looking for that. That’s not the assumption that people walk in the door with; something must be wrong with you, let me see find out what that is. We miss a lot, we’re not that observant. I think it’s important to keep that in mind.”
LS: “Okay. Coming into kindergarten, what were the services they offered?”
Abbi: “In kindergarten, I don’t really think there was anything. It was more when we switched to elementary school. Then they told us that he was entitled to a certain number of hours per week that they kind of tagged as supplementary hearing hours. This was with a hearing specialist who would pull him out of the classroom for, I feel like it’s twice a week. She pulls him out for an hour each time and they do different things with that. Some of it is that she might review with him something that’s being done in the classroom just to make sure that he heard and understood everything. Sometimes it’s working on social skills, like what would you say if someone said ‘this’ to you and what do you do and how do you respond in this situation, kind of thing. So just different kinds of support with this woman and we’ve been very lucky, because the woman who was assigned to Amit is incredible and has worked with him since first grade and he’s now coming to the end of his fourth grade year. So for four years she has been working with him and she’s an incredible person. We got pretty lucky there. And she really cares about Amit and his whole experience as a child and as a person. It’s not just about hearing, it’s really about his whole experience as a child.
Also the law provides in Israel, and I don’t know how this is in other countries, the law doesn’t just provide, it requires that his classroom be an acoustically treated classroom. He switched classrooms within the school and the school has moved locations since he enrolled and each year they have to make sure that he has that acoustically treated classroom with a built in sound system. Has that been perfect? No. Every time he has switched classrooms, they have had to install the sound system and train the teachers how to use the headset but it’s always happened. When he was in a classroom where the sound system wasn’t placed properly, there were certainly accommodations made. He’s always had preferential seating and I’ve always, in that first week of school, made the teachers aware that if he’s not looking up when you are saying something, like if he bent down to get something from his backpack, he may have missed something you said when there is no sound system in place. This was before he had his hearing aid. You have to be aware of that. Again, I don’t like making excuses for my kids because every kid in my house for example has responsibilities and chores and I don’t believe that because you are special needs, you don’t ever have to do anything and you can be a pain in the butt. That’s not us. (Ha Ha) We’re tough here. I don’t want teachers to say, ‘Oh, well Amit clearly didn’t hear when I announced the homework so that’s why he didn’t do it.’ NO, Amit didn’t do his homework because he’s freakin’ lazy, he hates doing homework. But, if you said, take out your math book and he was bent over doing something else and he comes out and he’s literally the only kid who doesn’t have his math book and doesn’t know what’s going on, there’s an excellent chance he didn’t hear you say that.”
LS: “When you notice those kinds of things at home because you are so aware and because you’re paying attention, then you realize what strategies you need to implement? Or was it more formal, like did someone actually sit with you or did you read articles to find out what you needed to do and how to deal with this?”
Abbi: “I probably read some articles because that’s who I am as a person, I tend to research things. There was a fair amount of common sense in my mind involved in it. If Amit was doing something, and again, because I have a different kid with different special needs, I had already learned this whole, I need you to be looking at me when I’m talking to you. And I also over the years developed that speech pattern of many mothers of typical children but certainly mothers of children with any kind of special needs where you say everything three times, three different ways. Okay, I need you to set the table now, it’s time to set the table, I need you to stop what you’re doing and set the table, like literally three times. With Amit I understood fairly early on that I needed to make sure he was actually focused on what I was saying because he could very easily miss it otherwise. Especially if Amit does something like put headphones on while using an Ipad for example, he’s just not going to hear anything that is happening. I have to get in his line of vision, make a sign at him to take off the headphones and look at me and now I’m speaking. I also do a thing with my kids. This is for all my kids regardless of their issues or non-issues. What did I say, say it back to me, great, okay.”
LS: “Very impressive. Very nice. The reason I’m asking is because we actually do training on these kinds of communication strategies where you have to be very clear and then rephrase what you said. So in addition to saying, set the table, three times, you also might need to say, you need to take out a tablecloth and plates. So then you now know what “set the table” means. Maybe that exact phrase wasn’t heard correctly or understood correctly so you rephrase. And you’ll want to say it again in half a minute, because it’s already half a minute later, who knows where the short term memory has gone (haha).”
Abbi: “Correct. Absolutely. I also found more with my other son, Adi, that I have a tendency to be extremely sarcastic and very dry. So if my kids say that their father said, “Ask your mother if she needs any help” and they’ll be like, ‘Do you need any help?’ My stalk response would be, ‘Obviously I don’t need any help. I’m totally fine doing all these things.’ If I say that to Adi, he would be like, “Great, mommy said she doesn’t need any help.” I have learned over the years that if I want some of my kids to actually do things, I need to be less sarcastic and a little more straightforward. There’s a learning curve involved. It doesn’t come naturally to me. So yeah there’s a lot of work that has to be done on ourselves as well.”
LS: “So back to his timeline here, at what point did you go hear about the BAHA? Was that on your radar at all?”
Abbi: “It was definitely on our radar and it was something that we were thinking about. I think even when he was in nursery, we were thinking about it. But life throws all kinds of things at you and for us the big thing that life threw at us was my middle kid, Adi, who has all the luck was diagnosed with leukemia. So this was 2013. Amit would have been around two and a little bit, three maybe. And Adi was diagnosed with leukemia which threw the entire family into chaos. We were living in Israel and like I said it worked out well for us because all of Adi’s treatment for the entire time that he was in treatment for cancer, we didn’t pay anything for it. That was all covered. So extensive hospital stays, emergency surgeries for all kinds of complications that came up from the treatment of the leukemia. Lots of stuff happened, I mean, to be very honest, we completely stopped thinking about Amit, hearing loss and BAHAs. There was no room emotionally, no room in my brain. It was just not going to happen. So all of that got tabled.
Adi got better and life slowly went back to something resembling normal. Amit at this time was in elementary school for like around second grade and that’s when we really started looking into how would we get this BAHA, like how does this happen. And we went down a little bit of an incorrect path. We were told that we would want to work with this particular hospital and these particular doctors and we did that for a couple of months with long wait times in between appointments which is the downside of socialized medicine. When it’s not an emergency situation, you could end up waiting a long time but you don’t pay so you know, six of one, half a dozen of the other. At some point somebody said to us, this is not the way you want to be doing this. You actually want to be working with this other team and this other hospital and this is the process that we have in place. We started over but once we got on the correct path, it was very straight forward. We did a one week trial with a soft band, maybe two weeks, I don’t remember. He saw the difference in what he was hearing. It was interesting to see how he responded to that and then we started on the timeline to get approved for the surgery and move forward with getting the BAHA. Really, like I said, once we were on the correct path on the administrative side, it was very straight forward. There was a timeline involved and there was some waiting involved but it was very straight forward.
We were able to have Amit’s hearing support system, like the teacher spoke with him about it. They spoke with the class about it. Everyone knew he would be missing a couple of days in school. We talked about it how they will shave part of your hair, and there’s going to be a surgery and there’s going to be a scar afterwards and what that’s going to feel like. And you’re not going to run around like a crazy person for a couple of weeks right afterwards. We had time to prepare him and we had guidance on how to do that. And we made it to the day of the surgery. It was done in a children’s hospital, which is great because it’s not just a pediatric ward in a regular hospital. It’s a whole children’s hospital environment, so that was very helpful. So that meant, for example, they are set up that a parent goes in to the OR (Operating Room) with the child until the child is under anesthesia. Little things that make the whole situation more comfortable.
The other piece of it was that we had spent two and a half years in this hospital with a very sick child and so we knew everybody and everything. We were very familiar with processes. We’re in the recovery room waiting for our kid to wake up from surgery, my husband and I both have laptops and we’re doing stuff because this was normal surgery with a healthy child. We weren’t anticipating any kind of weird outcome. We knew how to look at the monitors and understand, his BP (Blood Pressure) is fine, all these stats are normal. We were totally un-phased and all the other people in the recovery room, were like who are those parents who don’t love their child. (Laughing) And literally every nurse, doctor, anesthesiologist who would walk into the recovery room would see us, do a double take, because they thought, you know, our kid had relapsed and they would figure out it’s a different kid. We were clearly very calm. They were like, oh okay. It was a bizarre experience, like an alternate universe, I don’t know.”
Abbi: “He was overnight in the hospital for one night and then we were discharged and he came home. I remember his friends came over to visit after school and he was like, so can I go out and play with them? We said no, children who were discharged from the hospital this morning do not go out to play in the afternoon. One more day you can sit at home and be a little bit bored. The next day he wanted to go back to school. We were like, okay. And this was probably one of the most interesting things about Amit. He went to school that day, he came home that afternoon and he’s telling me this story and he’s chuckling the whole time. He was saying, oh my god, these kids were totally terrified of me today. He says they were little kids, like in first grade. Because I had surgery and I have this scar and he’s showing me and I’m like yes I’m familiar and aware. They saw it and didn’t know what it was so they thought I was a monster so they were running away from me. And I was like, Oh my god, how did that make you feel? He was like, I don’t care, those were kids that don’t know me. I don’t care what they think. And I was just surprised (both laughing).”
LS: “You were thinking, how did I raise such a resilient child?”
Abbi: “I know and I was thinking maybe I did one thing right in all these years of screwing things up. So that was a pretty cool moment right there. It’s probably a month after the surgery that they set you up with the actual hearing aid.”
LS: “I find it so interesting because it’s so much of how the stories that we put on the kids. It’s so about us. A kid comes and tells you they called you a monster and you already have like six reactions of what that means, and the kid is like whatever.”
LS: “Amazing. And also about his ear, like you said earlier, even with the way his ear looks, nobody is having to stare at it.”
Abbi: “No one. No one. I’m in a Facebook group for parents with kids that have microtia. And for a lot of families, I understand that this is literally the most significant and difficult thing that’s happened to them as a family. From my viewpoint, they are making it into something that it doesn’t need to be. The posts I read, are like how will we ever leave the house? How will our child ever walk out in public? I read these posts and I’m thinking, you just walk out of the house, that’s it. There’s nothing more to it than that. So I get that I’m not a very empathetic person (Ha Ha) but I also think that we don’t have to make these things more than they are.”
LS: “That’s perspective right there (laughing). Wasn’t easy to come by, but I can definitely see how it’s treating you well…”
Abbi: “Yeah I mean I come by this stuff very honestly and I have put in my hours of sobbing and screaming and railing at the universe. But I do have perspective, there is that.”
LS: “Okay, so Amit got his hearing aid finally, the BAHA is activated and programmed. So tell me about what is the response for him and school and at home. What’s that like for him?”
Abbi: “So the first couple of days, he’s like why are you all yelling all the time. I’m like, we’re not, you’re just hearing us now (for the first time). And in the beginning he did not like wearing it at all. And it turned out that it took us some time to figure some of these pieces out, but one, the external magnet was too strong so it was really giving him these headaches and we didn’t realize that for a couple of months. Once we switched the magnet for the proper one that really helped. Then it was probably like a year after he had the hearing aid, that we went in for a follow up hearing test on both sides. So to see the good ear and then to see what gains he had with the hearing aid on the right ear and the technician who did the test, said that all of these lower registrars he’s not hearing, you need to go and have this re-programmed. We went back to have it re-programmed and it turns out, I guess, I don’t know, maybe someone had told us and we didn’t hear it, or maybe someone hadn’t given us the proper guidance, but there’s settings for we’ve just come out of surgery and we’re just starting with the hearing aid, and then there’s settings for a couple of months later and we had never done that. It was a year later until we fixed that piece and that was fairly recent.
Now I feel like, one, he wears the hearing aid much more naturally. Certainly when it had the magnet that was too strong, if he wasn’t in school, that thing was off. He would walk in the door and immediately pull it off. It turns out that there was a lot of pain involved that nobody was picking up on. Once we dealt with that issue and he would wear it all day, and now I feel like it’s much more a part of him. I do’n’t have to remind him as frequently. I do sometimes but for the most part, I don’t have to remind him to put on his hearing aid, it’s more natural for him to kind of grab it when he comes downstairs in the morning and put it on and that kind of thing.
So definitely feel like there’s a learning curve for families when you start something like this. Like with anything. I feel like we also went through this when one of my kids got glasses. Where are your glasses? Put them on! I think there’s some learning curve involved and it’s hard because few of us have our own experience with hearing aids. With glasses, it’s something that a lot of us wear, like we know you have to clean them because otherwise the kid can’t see anything. We don’t know all of these things necessarily about hearing aids unless someone teaches it to us and I feel like, at least for us, that piece of support was maybe a little bit missing.”
LS: “In terms of batteries and who’s taking care of it. Is that him, is it you or a combination?”
Abbi: “It’s a combination. I ordered a giant supply of these batteries from Amazon and I have our main stash in a drawer in the kitchen where the hearing aid also lives when it’s in its’ case. I carry around in my purse a packet of six batteries. I have in his backpack, so that if he’s at school and the battery runs out, he’s got them in his backpack and he knows where that is. I think in the very beginning I also had a stash with the teacher in the classroom. I then thought that it was silly because he has it in his bag. And he’s good enough to come to me and say that he used the last one, give me a new pack. I think with a younger kid, it would be more on the parents to be on the ball. Amit is nine and a half already and in fourth grade and he’s able to take responsibility for some of the stuff.”
LS: “That’s great. So you mentioned that you didn’t feel like you had total guidance about the day to day stuff. So who was your go to, did you have a relationship with an audiology team? What did you do?”
Abbi: “So no, even now I don’t feel like I have a real relationship with an audiology team. I feel like there’s a little bit of this separation and it may just be because of the way things are run in Israel. There’s the hospital team where we do our testing and then separately there’s the company that provides the hearing aid and all the stuff. I don’t feel like there’s any, I know there is some connection between them, I know those people talk to each other but I don’t feel like I have a team. I feel like I’m the person that needs to manage, take information from one place and give it to the other, and if I don’t take care of that, it’s kind of going to fall apart.”
LS: “Yes, that’s a very important role and why parents are so important. (haha) It’s one of the things that we talk a lot on the podcast about being an advocate. And it’s not just an advocate, it’s the manager, it’s the transporter, it’s the scheduler, and as a parent, you become everything. You are the team.”
Abbi: “You are the team. I was lucky if you want to say that in that I had some experience in running that role for my other kid. So it was a role that I was kind of able to step into once I realized that that was expected of me. I think it just took a little bit of time to figure out that I needed to do that.”
LS: “Wow. Abbi thank you so much for sharing your perspectives and your journey with lots of things, hearing among them. And if there’s anything else you want to tell our listeners, maybe about your business or anything else you want to share. You are welcome to talk about it any time.”
Abbi: “So while all of this has happened, one of the things that has enabled me to be the advocate for my kids that I want to be, is that I work for myself. I’m a freelancer. I’ve been a freelancer for my entire adult life. And that started when my first baby was born. I have a site at successfulfreelancemom.com. If you have ever thought about writing and making money from writing, you can find decent information there on how to do that. And I’m a fairly accessible person so if you visit my website and you have questions, it’s pretty easy to figure out how to email me or find me on Facebook and then all the places you can get in touch with me and ask questions. So there you go.”
LS: “Thank you so much Abbi for being on the show.”
Abbi: “Thank you so much for having me I had a blast.”
Wow, what an absolutely incredible story. So much resilience. I was so grateful to hear about the ups and the downs. Because that’s really the real journey. The real thing doesn’t go according to the textbook. It doesn’t go according to anyone else’s timeline. It’s just real life and whatever we can do. I’m so glad that Amit had the services that he did when he did get them, and is using the BAHA successfully.
I want to thank you for being here and listening until the end. I hope by listening to the podcast, that you feel more connected to other people who may be going through things that you are going through and to get information and become educated on the things that are important to you and your family. I’m here to answer any questions. I’m easily reachable on Instagram, on Facebook or through allaboutaudiology.com. And I want to ask you for a very big favor at the start of season two. It would really, really help the podcast and it would help me reach more parents if you left a review on Itunes. If you have an Iphone, you can do it right through the podcasting app. Scroll to the bottom of the all about audiology feed and leave a review of the show. It would really mean a lot to me and it would help us reach more parents and grow this community. There’s lots more to come in season two and I can’t wait to share all of that with you guys. I also want to remind you that your comments and your reviews and your questions are what this show is about so please, please do reach out. You can tag me on Instagram @allaboutaudiology podcast. Send me DMs. Join the Facebook group. I am here for you and I can’t wait to hear how this episode landed for you or any additional questions you have about BAHA or anything else about audiology.
I’m your host Dr. Lilach Saperstein and this is All About Audiology.