Episode 16 Show Notes

All Ears at Child's Voice Podcast

(Transcript below)

On episode 16 of All Ears at Child’s Voice: A Hearing Loss Podcast, Tatum and Wendy interview Dr. Nancy Young about her career as an otolaryngologist as well as many details of the cochlear implant surgery and other issues surrounding children with hearing loss and their families. Dr. Young is an incredibly well respected surgeon and she discusses how her patients’ stories do not end with their surgery, which has inspired her to pursue research on the language and educational outcomes associated with children with cochlear implants.

Tatum and Wendy talked with Dr. Young shares…

  • How she became interested in cochlear implantation surgery as a specialty in otolaryngology
  • A detailed description of the cochlear implant surgery, including the procedure, the safety of the surgery, recovery, and her thoughts on barriers families she has worked with have needed to overcome prior to surgery
  • Information about her team at Lurie Children’s Hospital in Chicago
  • Some of the medical and audological candidacy requirements for cochlear implants in children
  • Why vaccinations are an important part of the cochlear implant process
  • The changes she has seen in the field of education for children with hearing loss and in the cochlear implant process itself
  • How she is leading the way to the future of cochlear implants, including CIs for single unilateral profound hearing losses and asymmetric loss, and how she is working to gain FDA approval for CIs in children under 12 months of age
  • Her special interest in working with families of children who have developmental and/ or medical needs in addition to their hearing loss
  • Her current research on using brain imaging to help predict patient outcomes with cochlear implants
  • And more!

We thank Dr. Young for her time; it was a wonderful conversation. Dr. Young discussed several of her research studies on the show. Click below if you’d like to view these studies.

If you would like to learn more about Dr. Young and Lurie Children’s Hospital you can visit their website:

https://www.luriechildrens.org/en/doctors/young-nancy-m-2052/

Special thanks to John McCortney & Michael McCortney for their work recording All Ears at Child’s Voice episodes. Episodes of All Ears at Child’s Voice are graciously edited by John McCortney.

Disclaimer: Child’s Voice is a listening-and-spoken-language program for children with hearing loss. All Ears at Child’s Voice: A Hearing Loss Podcast is a resource provided by Child’s Voice. Reference to any specific product or entity does not constitute an endorsement or recommendation by Child’s Voice. The views expressed by guests are their own and their appearance on the program does not imply an endorsement of them or any entity they represent. Views and opinions expressed by Child’s Voice employees are those of the employees and do not necessarily reflect the view of Child’s Voice.

Episode Transcript:

Elise Sundberg:                Welcome to another episode of All Ears at Child’s Voice, a podcast discussing all things hearing loss. We aim to connect parents of children with hearing loss with the professionals who serve them. I am Elise Sundberg and I am a Primary 2 teacher at Child’s Voice. I also recently started getting more involved with this Podcast and I am happy to be here. I teach in the Learning Center with the 5-7 year olds where we focus on self advocacy and mainstream readiness. I am new to this role so I am most looking forward to decorating my new classroom and getting the kids ready for our winter festival which is in December. Last week on the show, Tatum and Wendy interview Clara an alumni of Child’s Voice and her mother Julie who is a current Board Member. Go back and listen to the show if you have yet. And now, to start the show

                                          

Tatum:                              Welcome to another episode of All Ears at Child’s Voice, a podcast discussing all things hearing loss. We aim to connect parents of children with hearing loss with the professionals who serve them. We’re your hosts. I’m Tatum Fritz.

Wendy:                             Today on the show we will be talking to Dr. Nancy Young. Dr. Young is an otolaryngologist and is the head of the section of Otology and Neurotology and the medical director of the cochlear implant and audiology program at Ann and Robert H. Lurie Children’s Hospital in Chicago.

 

And I’m Wendy Deters. Today on the show, we will be talking to Dr. Nancy Young. She is also the director of research and the Lillian s as professor of pediatric otolaryngology and a member of Lurie Children’s surgical foundation. Additionally, Dr. Young is a professor of otolaryngology at Northwestern University, Feinberg School of Medicine and a professor and fellow at the Knowles hearing center in the Department of Communication Sciences and Disorders at Northwestern University. Dr. Young has performed over 1900 cochlear implant surgeries including the first one in Chicago in 1991. She’s the author of many research articles. She conducts her own research and she recently edited a textbook called Pediatric Cochlear Implantation, of which she also co-authored a chapter. Dr. Young, we are honored to have you join us on our podcast. We are excited to learn more about you and about your work. Thank you for joining us.

Dr. Young:                        Thank you for this invitation.

Tatum:                              Well welcome to the show. We’re so excited to have you on today. Today we are going to be learning more about the cochlear implant surgical procedure as well as getting to know Dr. Young and her research on children with hearing loss. Dr. Young, we just read your incredible list of titles and all the amazing things that you’re doing, can you share in your own words what it is you do on a daily basis?

Dr. Young:                        Well, one of the, the great things about my job is that every day is somewhat different. There are some days that I’m in clinic seeing patients. Other days I’m doing surgery. Other days I have administrative or research meetings. And yet other days I’m really working on my own writing related to research or academic types of work. So, other times I’m giving lectures or traveling to meetings, either to learn or to present. So it’s, it’s very varied and that’s one of the things I really like about my job.

Tatum:                              Yeah. And we also recently just saw you present when we visited Lurie Children’s in Westchester, Illinois and we got to see your live cochlear implant surgery.

Dr. Young:                        Yeah. That was a lot of fun to do live surgery and meet your guests from Israel.

Wendy:                             Yeah, that was great. Well thank you for sharing that with us. Before we jump into our main discussion, we like to ask our guests every week for a story from the past week. It could be anything, something cute, something funny, heartwarming. Does anything come to mind?

Dr. Young:                        Well I’d like to share with you that last Friday, I interviewed one of your graduates

So I’m preparing a lecture for Northwestern medical students and now a days lectures for medical students are, um, moving from live to being recorded. That’s the preference of the students. So this is the first time we’re recording my lecture and when I’d done it live, I’d always have either a parent or a patient. So, I decided to record, one of my patients who is now going off to college. So it was fun for me. I hadn’t seen her in many years and I had an opportunity to record her on my phone and ask a lot of questions. She is a very accomplished young woman. I was fascinated to learn that she studied the cello and participated in orchestra through high school, which I think is really fascinating because as I’m sure you know, cochlear implants were really not designed for music. And yet, some children really do amazingly well when it comes to appreciating and playing music. And I think that really says more about our brain that it says about anything else. So I was delighted about that and she’s going off to college soon and she plans to study civil engineering and it’s, I think that is very exciting and I’ve been in the field long enough where I now have many of my patients that are going off to college.

Tatum:                              So you created like a mini podcast.

Dr. Young:                        *laughter*

Wendy:                             That’s so wonderful. I think that’s unique about you too is you do seem to have a, a personal connection with many of your patients and you are, you’re not just putting a device in their head and moving on. You really are invested in the results and in their future.

Dr. Young:                        Well, I think it’s important to find out what happens afterwards. I think that makes you better able to counsel families beforehand and also to deal with issues that arise afterwards if you have a better understanding of all the different outcomes and not just the happy ones, but the different struggles that people have. So I think that’s part of it. I consider it part of my education. Also, I’m from a family that’s really in the arts. I’m from a family of really, I think of them as all in a way, professional storytellers. So I think I really am interested in, in hearing the story play out, it doesn’t end with the surgery.

Wendy:                             Right. Yeah. Well, speaking of that and your background and your family, we wanted to start by getting to know you and your background a little bit. So can you share with us how you became interested in cochlear implants and choosing this as a specialization in the field of otolaryngology?

Dr. Young:                        Well, I actually, when I applied for an otolaryngology residency as a medical student, I actually thought I was going to be a head and neck cancer surgeon. And that’s what I had been exposed to as a medical student. But once I became a resident, that’s when I had exposure to ear surgery. And I really liked the microsurgery. You know, we do most everything under the, the microscope or now with endoscopes as well. And I also think that that’s when I really got a better understanding of all of the issues around hearing loss and communication. So I found the nonsurgical aspect of it very, very interesting. So I changed course at that time.

Tatum:                              Yeah, that’s fascinating. I feel like I got into speech pathology, especially in, in particular working with kids with hearing loss and not just from the speech and language side of things, but everything that goes around the whole issue of hearing loss.

Wendy:                             So as early interventionists, we often work with families who are in the beginning stages of the cochlear implant process. They’re making this really difficult decision as to whether or not they want to elect to have their child undergo this surgical procedure in order to gain better access to sound. So as professionals our goals are to listen to the family’s questions and concerns and support them so they can make these decisions. And in many cases, the surgical procedure itself is one of the most stressful and scary parts of, of the whole thing. Sometimes that fear can sometimes…

Tatum:                              Almost like delay…

Wendy:                             Delay, yes, delay access to sound and access to language. So perhaps like a sort of parent friendly description of the surgical procedure would be helpful for some of the listeners from, from your perspective.

Dr. Young:                        Well the surgery, so it’s an elective procedure. It’s done in a very controlled manner. The surgery has evolved in that the incision I think in most people’s hands, certainly in mine is quite small compared to what we did many years ago. And basically most of the procedure is about access, we open the bone of the mastoid, which is behind the ear, looking for certain landmarks. Then we make another opening that allows us to look from the mastoid into the middle ear and identify the area of the round window. Because that is through which we thread the very fine electrode into the inner ear. Also we place the body of the device, beneath the scalp, against the skull. So it’s not a very painful procedure to recover from. I always tell people it’s not in the same league as, for instance, your child getting their tonsils out, that there’s a lot of discomfort. Most of my patients take Motrin or Tylenol or a little of both and many come back and say their child, the parents will often tell me their child only took Motrin a few times. There just aren’t a lot of nerve endings. I mean, we’re making a skin incision, but the bone doesn’t have sensation, so it’s just not a very painful procedure. So the recovery is, I think, surprisingly easy for most parents.

Wendy:                             What do you think it is that, that makes the decision so challenging, and not for all families. I’ve experienced such a wide range of emotions and decision-making processes, within families, but in the families that struggle to make this decision. What do you think is the scariest part?

Dr. Young:                        I think that’s a good question and I don’t think there is a simple answer. I think that you really need to try to understand each individual family. For many parents it’s, it’s actually quite easy. But we tend to focus on the ones where it’s difficult because we know as professionals that the delay in intervention makes a big difference, right? I have found one thing that’s very helpful is to ask families what their goals are for their child. And most of our children that we implant have hearing parents with spoken language and most parents want their child to be like themselves, to be able to talk, to go to their neighborhood school with their siblings, to share the family’s culture. And I think for them to say that and then, then you can then give them evidence-based information about what’s necessary to make that happen can be very helpful. And if they can’t move forward, you know, sometimes it’s the surgery, but sometimes it’s not the surgery. They may tell you it’s the surgery, but sometimes that’s a proxy for something else that people are really not ready to share. I think that’s where as a team, we work well together because you just don’t know who that family is going to click with and who they’re going to be willing to share really what the barriers really are and it’s really quite amazing what goes on in people’s lives. I think there are many families that really do not accept the diagnosis. It’s invisible. And some families unfortunately cannot move ahead until they actually see that their child is wildly behind in development of spoken language. But unfortunately that’s close to age two, which has a big impact and not a positive one. I think there are other families that there’s a cultural issue. They are not able to admit to their own family that there’s an issue because their child, it’s just not acceptable in their culture. I think we’ve shared families that along these lines have gone back to their home country for very fascinating treatments that are, shall we say, not evidence-based, and then come back and were able to move forward eventually. We’ve had families where it turns out that what’s going on is there are really bigger things in their life. They are about to lose their housing. Maybe they don’t have housing, they don’t know where the next meal is coming from.

Wendy:                             Those are good reminders for us to think about as professionals. The hearing loss and the language development, you know, we really, obviously that’s our main focus. But especially as early interventionists, we always have to take a step back and look at what’s going on with the whole family.

Dr. Young:                        I mean, there are families that have a terrible fear of surgery and sometimes it helps, you know, to ask, I find to ask directly, maybe they had an unfortunate experience in their family.

Tatum:                              I haven’t even thought about that before.

Dr. Young:                        If they share it, I can put it in context. It’s really very, very surprising. Sometimes it’s, it’s not that they don’t want to move. What we see is not necessarily they don’t want to move forward with the surgery, but they’re not able to move forward with, for instance, what comes even before we’re ready to do with the surgery to follow up for the audiology visits, to get early intervention services. We had one family years ago that just was so mistrustful that they just would not enroll their child in school. They were literally hiding from schools and they had aged out of early intervention and we insist if we’re going to implant the child, they have to be getting some type of services, either early intervention or private or in a school program of some type. We’ve seen some pretty interesting things over the years.

Tatum:                              That’s a great point that like the fear of surgery, it could be masking something else or if they have a fear of surgery, there’s likely other fears compounded in that.

Dr. Young:                        Or you may be assuming it’s a fear of surgery and they’re saying yes, but there may be something else going on.

Tatum:                              We may be asking leading questions.

Wendy:                             Right.

Dr. Young:                        Or it may be a little of more than one thing. Often there’s more than one thing going on.

Wendy:                             You spoke briefly about your team. Can you give a description of who is on your team? You’re the surgeon, but, there are many other people, like you said, that are involved in patients’ lives. So who are those people at Lurie?

Dr. Young:                        We have seven pediatric audiologists who specialize in cochlear implant evaluation and programming. We have speech pathologists who specialize specifically in aural habilitation, meaning the listening therapy that and the type of therapist who would encourage early spoken language in children just learning to listen. We have social workers, who support the families in terms of both the new diagnosis of hearing loss and in terms of their child undergoing an implant. We have an educator of the deaf and she works with families and with schools and early interventionists. We have another surgeon, Dr. Hoff. We have administrative support staff, including my assistant who really helps people through the insurance process because that can be very challenging and that can be a major barrier to getting kids implanted. So it really takes a lot of people working in a lot of different areas to make it happen and different families there’s different barriers and sometimes a whole host of different barriers to moving forward.

Tatum:                              So, you kind of mentioned, some of the kinder considerations that go into candidacy for receiving an implant. You mentioned having the children in an early intervention or an intervention program of some kind. What other considerations must be considered before a child becomes an implant candidate?

Dr. Young:                        Well, we need to be confident that we have good audiological information. We capture both their hearing thresholds at different frequencies in the unaided condition and then the aided condition, meaning using hearing aids. And then depending on the age, there are different ways to assess how much information that’s about speech and language they’re getting while using their hearing aids. We also want them to be getting hearing therapy. So when we do the evaluation, it actually reflects hearing aid use and therapy to help the parent develop those child’s skills. We don’t believe that you should use an ABR, which is a test that doesn’t require their child’s cooperation alone. We think that it’s a good idea to confirm what’s going on with some behavioral work. It can be very abbreviated in our children who are very, very deaf and get no benefit from hearing aids. It doesn’t take a long time to figure that. But I think that the exercise is very important. The therapy that’s done beforehand really prepares the parent and the child for what happens after the implant. It makes them easier to program, more accurate. I tell families it’s kind of like, you know, putting oil in the car’s engine, you know, where we’re getting things ready so things will run smoother. The other thing is can the parent achieve a degree of consistent hearing aid use. If they can’t keep the child’s hearing aids in, well that doesn’t bode well for consistent implant use. And I like to explain that to parents because sometimes I think they don’t see the point of the hearing aids, but it really does help the child in terms of even just learning a little bit of what’s called the conditioned response, presence or absence, that helps us with the programming. It helps the parents see the difference before and after. Oh, they weren’t responding with the hearing aid when the therapist was doing something. Oh, they are responding after the implant, they get very excited about that. If they don’t appreciate what their child can’t do, they tend to take for granted what the implant is doing and aren’t really going to be able to work with the therapist as well. They’re disappointed sometimes instead of being excited, which they really, really should be. There are so many benefits to that process. Some parents just, they need to learn to organize their day so that their child’s device is part of the family’s routine. They need to learn that beforehand.

Wendy:                             I think we could do a whole episode on hearing aid use in babies. It is such a challenge. I know for families and for professionals and we really, I know we all make a huge concerted effort to support families through that process, especially with the trend of early identification and early implantation. You know, we’ve got hearing aids on babies at two months old, even younger. It’s definitely something we all have to work through as a team. But hearing from you, the reasons why it’s so important knowing that those are often the things that we tell families as well. It does take a village to keep, keep those devices on, but knowing that the reason for it is so important

Tatum:                              So, as you mentioned part of also the candidacy process I know is receiving an MRI to check the integrity of the auditory nerve and the structure of the cochlea. Can you speak a little bit about that?

Dr. Young:                        Yeah at our center, an MRI is required. In my opinion, it should always be part of the evaluation unless there’s a medical contraindication to doing an MRI. We do a high resolution study to look at the anatomy of the inner ear and the nerve of hearing. We also obtain a survey of the brain at the same time. In some cases if the anatomy is unusual, we also may want to get a cat scan to obtain more information about the bony anatomy because that can be helpful in surgery. But most of the time we don’t need the cat scan, which is great simply because we try to minimize exposure to radiation.

Wendy:                             And I know we will get in there with implanting children with maybe abnormal anatomy or small nerves but we’ll get there, right?

Tatum:                              Yeah, I was about to get there but we’ll get there later.

Wendy:                             Should we talk about risks?

Dr. Young:                        In terms of risk of surgery, I think it’s important that people realize that modern surgical techniques and modern anesthesia makes this type of elective surgery extremely safe. We just looked at over 200 kids implanted under three and we were specifically interested in the safety outcomes from a surgical and aesthetic standpoint, especially for the kids under 12 months. And we compared the two groups, the under 12 months and the 12 to 36 months. And there was no difference. There was no increased evidence of problems. And of course, we’re in a first world country, we’re in a pediatric tertiary care hospital where every anesthesiologist is an expert in pediatric anesthesia and that has become a recognized sub specialty of anesthesia and also it helps to keep in mind that a lot of the risks associated with anesthesia in other contexts is related to a life threatening emergency situation perhaps where there’s a lot of bleeding and this sort of thing. Like there’s been a car accident or there’s heart surgery going on. None of those things apply to this situation. This is a procedure that is done in a planned manner. And even our children with complicating medical conditions, the anesthesiologist classify them in terms of their risk and we make sure that anything that needs to be done to make sure they’re ready and that all the other physicians involved in their medical care are aware of what’s going on and agree that all of that is taken care of. And we operate on many children who are in higher anesthetic risk classes because they have complicating medical conditions. I operate on many children with unusual anatomies where the surgery is going to be more difficult. And I think that with proper preparation, risks and can be kept to a minimum. One of the uncommon problems we do face and that I discuss in the paper is some of the children with very unusual inner ear anatomy actually have an abnormal connection of the inner ear to the brain. And so the fluid that bathes the brain, the cerebral spinal fluid is actually sitting in the inner ear. So when the surgeon makes that little opening, the fluid leaks out so the child can still be implanted. I’ve done that many times, but it’s very important to seal that leak because if that fluid is still leaking into the middle ear that increases risk of a serious infection happening later called meningitis. Fortunately, we almost always know who is at increased risk based on their anatomy so we can counsel the families appropriately. The good news is those procedures go well and in my experience kids are typically going home the next day.

Wendy:                             Wow. And you mentioned meningitis is the meningitis vaccine part of the pre-surgery, is that something that has to be done prior to surgery too?

Dr. Young:                        So you’re asking a really good question. And this is an area I’m really kind of passionate about. There are certain vaccinations that are specifically recommended for both adults and children before they receive a cochlear implant. There isn’t in quotes, a meningitis vaccine. There are many different vaccinations that can reduce the risk of meningitis, but there are only specific ones that are necessary. There are only specific types of infections that are associated with the cochlear implant. The risk is small, but vaccinations are so safe and effective that it’s important to do them, the ones that can be done before the surgery and to complete the recommended vaccinations afterward if that’s necessary. So we vaccinate in particular for pneumococcal disease. I could spend this whole podcast honestly talking about everything I know about vaccinations and bore everyone to tears. My nurse who’s on the implant team, Candy, that’s her job is to really make sure that the kids have the vaccinations that they need beforehand and that we remind the families afterwards because certain ones can’t be given until the kids are older and so they’ll be given after implantation and then we like to remind the parents and the pediatricians about that need.

Wendy:                             Excellent.

Tatum:                              I had not heard about the ones that are recommended for after.

Dr. Young:                        Depends on age.

Tatum:                              So we mentioned at the beginning that you performed the first ever cochlear implant surgery to occur in Chicago.

Dr. Young:                        Well, the first implant surgery to occur in Chicago on a child.

Tatum:                              Oh, on a child?

Dr. Young:                        On a child *laughs*.

Tatum:                              Okay, thanks for that clarification.

Dr. Young:                        I’m not old enough to have done the first implant surgery in Chicago.

Tatum:                              That makes sense actually. So the first pediatric cochlear implant surgery in Chicago and it took place back in 1991. So what changes have you seen maybe in the field of pediatric hearing loss, but also specifically like in the CI surgery itself?

Dr. Young:                        Well, there’s so many changes it’s just mind boggling. I mean when I started the thinking was that on the part of many people was that the cochlear implant would not be helpful for children that were born deaf. That it would only be helpful for children who had lost their hearing. So children analogous to the adults because adults were first implanted. So it was not very accepted in the, in the beginning. But I had never had any doubts that this would make a huge difference and I was dedicated to it and believed in it from the beginning. And it was clear to me all of the changes that would happen. Like for instance, that we have a Child’s Voice school, really no surprise to me, cause it was clear that kids having more hearing would cause all sorts of changes both in the children’s lives and the kind of support services and educational services that they would need. So back in the day when I started, very few kids were candidates. And really the change was in many ways driven initially by parents because what happened is the parents would come in and say, well, that child who has an implant is doing so much more than my child with hearing aids, what do you mean they’re not a candidate for this device? And I really think that parents really drove the field. And over time, the candidacy has broadened. It needs to broaden more. We’re very proactive in our center, but I don’t think that’s true at all centers for multiple reasons. So more residual hearing and then also, age of implant has been moving down, although there are barriers in the US to that, which are unfortunate. And maybe we could talk about that later.

Tatum:                              Yes.

Dr. Young:                        Other changes. Well, there’s a very exciting change that just happened last week. It doesn’t really affect Child’s Voice school but I think it’s about time. And that is that the first cochlear implant device, the Synchrony by Med-EL corporation, has received FDA approval to be used in both children and adults who are deaf in one ear and have normal hearing in the other ear.

Wendy:                             That’s so exciting.

Dr. Young:                        So that’s a huge change. And also equally if not more important, this, this approval included use in children with asymmetric hearing loss. And so that’s something at Lurie we’ve been doing for years, but it can be a big fight with insurance companies. So we have kids that are deaf in one ear and the other ear is hearing impaired. The other ear is not an ear we would recommend an implant in because they may only have a moderate loss. They’re doing very well, but they’re not getting the benefit of hearing from two ears. And they do so much better if at a young age they’re hearing from both years. So we’re very excited that this change in recognized FDA approved candidacy criteria here has happened because I think it’s going to improve access for children in the United States and adults.

Wendy:                             Absolutely. I think that’ll totally change the landscape of how we look at what we call single sided deafness and a unilateral hearing loss, which we’re also addressing on, on this podcast.

Tatum:                              Yeah, that’s on a back burner for us to do an episode on cochlear implants and single sided deafness.

Dr. Young:                        I’ve implanted a number of children over the last year and a half with single sided deaf deafness and it’s a very different population, a very different type of benefit. But it’s really wonderful in its own way. So we’re very excited about that at Lurie. The other thing is we’re leading a clinical trial with Med-EL to expand candidacy for children the goal is to receive FDA approval to implant children as young as seven of age as well as to broaden the audiological candidacy and that will help improve access for all children. There’s so much evidence that’s coming out about the benefits of implanting infants but without the FDA approval, I think that creates barriers. It’s, it doesn’t have to, but it does.

Wendy:                             Absolutely. We’ve both worked with families recently whose children were implanted under. If we can clarify quickly for the listeners right now, and correct me if I’m wrong, the FDA approves cochlear implantation at 12 months old.

Dr. Young:                        So, there’s a misconception people think that the FDA is saying you can’t implant children under 12 months.

Wendy:                             Okay.

Dr. Young:                        That’s not the case. So when a manufacturer sets up an FDA clinical trial the approved indications in large measure have to do with the way the study was set up. So 20 years ago, cause I was involved in those clinical trials. Initially the youngest age, the trials are set up with was 24 months, then it was 12 months. Well, no one has done a new clinical trial in many, many, many years for children. So as new devices have come along, we’ve used them. But the clinical trials have been done in adults and that’s why the adult criteria broadened. But because the companies had not invested in clinical trials for children, those criteria had not changed. The FDA doesn’t say you can’t implant a younger child. You can use as a physician, as a surgeon, you can use a device what’s called off label. All of us have taken antibiotics off label. An antibiotic may be approved for ear infections and yet based on what organisms it covers, a doctor’s going to prescribe it to you for your sinus infection. Okay. So that’s off label. We do this all the time. There’s tons of literature out there that supports, the benefits of an implant in younger children, but insurance companies and in many cases state programs that provide insurance benefits. They may choose to define what’s a covered benefit based on FDA criteria. They do not have to, but they may choose to. And so that can set you up for having to fight for each case. So we’re fighters at Lurie and sometimes that makes a difference. But if your center does not fight, you know, sometimes I think some centers think that if it’s not approved by the insurance company, that means they’re not candidate. But you have to separate what’s medically right for the patient and what their particular funding source will pay for they’re really two separate issues. And I think you have to give parents an honest, tell them honestly, you know, what your decision is based on.

Wendy:                             It’s so interesting to hear that sometimes it’s an insurance issue because it gives the illusion, I think, to families that it’s less safe under a year old. But that had nothing to do with the decision.

Dr. Young:                        Here’s the thing. So when the FDA has indications, it’s based on a clinical trial that included safety. So I can see that it would be reassuring to a family to see, hey, another clinical trial has been done and it’s been found to be safe and the FDA is appropriately conservative. So it is reassuring for families. But there’s also been 20 years of experience and there’ve been a number of papers, including ours, including some amazing studies that come from Australia that have been NIH funded that show great benefit. So, I understand why parents would be nervous. And that’s why I was very happy that Med-EL was willing to invest in this type of clinical trial. I’m very confident it’s going to confirm safety. Yeah.

Wendy:                             It’s so exciting. It’s amazing that we get to work in this field and actually see the changes happen over time and the benefit the children.

Tatum:                              And it’s amazing to be in Chicago where you guys are doing more of the cutting edge side of the field. Cause I imagine other surgeons also might not be as comfortable going off of FDA guidelines or is it more from an insurance…

Dr. Young:                        Yeah, I don’t know. That’s a good question. I’m afraid I can’t answer. I’ve spent a lot of effort trying to stay on top of what’s going in my own program, what’s going on. Right. So I really can’t speak necessarily, most of the centers that I network with are other very experienced centers, so I don’t always have the feeling for what’s going on throughout the country.

Wendy:                             Yeah. A little bit more on the surgical technique. As many of our listeners know, both of my parents are bilateral cochlear implant recipients…

Dr. Young:                        I didn’t know that.

Wendy:                             You didn’t?

Dr. Young:                        I did not.

Dr. Young:                        They are! Yeah. They’re, they’re amazing.

Tatum:                              Wendy was the first guest speaker of the podcast, almost a year ago.

Wendy:                             Talking about my incredible parents and their cochlear implant journey and their journey with hearing loss. But when they received their cochlear implants, I remember going with my mother and they had to shave half of her head. She had a big scar along the side of her head. I remember going with her to Northwestern actually to get her staples removed. The surgery looked much different. How has that changed?

Dr. Young:                        Oh, yes. Well, I’ve been around long enough that I know exactly what you’re talking about. In the early days, I did a big C shaped incision. It looked like a neurosurgical procedure. We used to actually keep the kids in the hospital for a few days. I mean, it was just so new. And now it’s, you know, a small incision behind the ear. The kids go home the same day. Even most of our kids who get two at the same time, one in each ear. Those kids usually go home the same day. I use stitches that absorb. There’s no stitches to take out. On the surface of the skin I use glue, which didn’t even exist as a product for surgeons when I started doing cochlear implant surgery. And the devices have gotten so much thinner. They have a lower profile. For me, the surgical time has just dramatically declined because of all of these changes.

Tatum:                              What is the average time would you say for unilateral implantation on a kid?

Dr. Young:                        It’s going to vary with the surgeon. It’s going to vary with the age of the child. The babies have less bone, I find that the babies take less time, but I’ve done a lot of implants on babies, so I wouldn’t say that was necessarily everyone’s experience. I like to tell parents to figure it’s two hours plus or minus a half hour, but sometimes it can be an hour. I think it’s very important that it not be a race that it not, it should not be about the surgeon shouldn’t feel, oh, you know, I need to do this in the least possible time because somehow that’s part of how you show that you’re a good surgeon, how you market your practice. I don’t want to be involved in that kind of a race. I don’t want parents to be anxious because they think it’s taking longer than I said. I try to assure people that if there is a problem that is significant, then I would stop and come out and talk to you about it. And it also depends on the individual anatomy. So there are all sorts of reasons that you may not be able to exactly predict how long the case it’s gonna take. I would say it’s, it’s usually under three hours. But then the other issue is of course parents time surgery differently than surgeons.

Wendy:                             Right.

Tatum:                              Probably feels longer.

Dr. Young:                        Surgeons time surgery from when they make the incision to when they finish closing.

Tatum:                              Ohh.

Dr. Young:                        So we’re not including, and I try to explain this to people, we’re not including the time it takes to wheel the child down the hall to put them to sleep, to certain equipment we can’t set up and the prepping and the draping and then there’s the time the surgery’s done. But they have to be woken up and then they have to be moved to the recovery and then they have to be awake and settled before they have the parent. I think for the parent, the length of the surgery is when they last see their child to when they next see their child, that is not the same thing as the length of the surgery.

Wendy:                             I’ve gone through some different minor surgeries with my own children, but the communication between the hospital staff and the families is just incredible. Where we were, there’s a board where you can see exactly where your child is if they’re in surgery, if they’re out, if they’ve woken up. All of that I think helps ease parents’ anxiety when they can’t physically see their child.

Dr. Young:                        Yeah, I think you’re right. And we try to actually call the parent and say, Oh, we’re just closing now. So the child is still in the or that it hasn’t changed in terms of what the board you’re talking about, but they know the device is in. We’re just finishing up. I also get an x-ray, so that takes a little extra time. But they know that the surgery is basically done, but there’s going to be more time.

Wendy:                             This is a very general, and maybe personal question. How do you perform these surgeries and just you’re so calm?

Dr. Young:                        Well, I think it’s, for me, it’s easier to stay calm in surgery than in other situations.

Wendy:                             Okay.

Dr. Young:                        Because there’s nothing to be gained by not staying calm. You just have to stay focused. I think it’s part of the training as well. There’s nothing to be gained by not staying calm. I wish outside of surgery I could stay as calm sometimes.

Wendy:                             I think that we all wish that we had some of your qualities because what you do is just incredible.

Tatum:                              It’s like your zen zone.

Dr. Young:                        Yes.

Tatum:                              I know something else that has changed over time is the preservation of residual hearing. What has your experience been with that and can you maybe define that for our listeners first?

Dr. Young:                        Preservation of residual hearing is, an interesting area. We have been implanting children with a lot of low frequency hearing for many years before they even had the newer hearing preservation electrodes. I think the number one benefit of hearing preservation surgery is for the children who have a lot of low frequency hearing. I mean some of our kids are normal at 200 and 250 or 500 hertz or only have a mild or moderate loss in those low frequencies. If they’re preserved after surgery, then with the newer cochlear implant, externally worn processors, you can actually give them electric hearing for the mid to high frequencies, the hearing that they weren’t getting enough of before the implant and then amplify their residual hearing. So, they’re using both acoustic and electric hearing and we have quite a number of kids a growing number that use that type of equipment, although some of them do prefer all electric hearing. It’s quite interesting. I have to say that all of the children we’ve implanted that have residual hearing, even the ones where it’s really quite a bit in the low frequencies, they’ve all done better, um, with the, the implant, whether their residual here was preserved or not. So I’m very confident when we recommend an implant that these kids are going to do better. Our results from a hearing preservation standpoint have really been wonderful, especially with some of the newer electrodes. The thing that we have to keep in mind though is many of our children actually have progressive hearing loss and even if we preserve it, that doesn’t mean it’s going to be there forever. I think the important thing though is with the implant, what we’re giving these children is their access to s and f and t-h and all those soft, high-frequency sounds. I think we’re giving them a better ability to hear in noise compared to what they had beforehand. I think that the fact that we can preserve residual hearing is having more families come forward and consider it. So that’s a good thing.

Tatum:                              Yes. Yes. I definitely have worked with some families that definitely needed that access to the higher-frequency sounds. And I’ve seen the idea that it could be preserved has helped them through the counseling process. So we’ve talked a lot about the surgery itself, things to consider beforehand, things to consider during, we haven’t really talked about, the kinds of kids that are receiving cochlear implants or the variety of children that might be a good implant candidate. So I know that Lurie’s does have a history of implanting children that have additional needs in addition to their hearing loss. Can you talk a little bit about that?

Dr. Young:                        Yeah, that has been a really a special interest of mine. We’ve been implanting children who have complicating medical conditions including many that placed them at risk for a language delay, independent of their hearing loss. Many of these children, there are other diagnoses make them at increased risk for cognitive issues. Although you don’t know that that’s necessarily the case. There’s a difference between a risk and reality and there’s also such a thing as a self-fulfilling prophecy, right? So if we’re concerned that someone might not do well and then we don’t give them a treatment, well I think we’re kind of guaranteeing that they’re not going to do well. So children’s hospitals are, I mean the reason they were developed in many ways is to really meet the special needs of children and to understand that population and the mission of our hospital is to really to help children achieve their full potential. And when I started doing implants, I think because the field was trying to sort of under attack and just trying to prove itself, I think there was a tendency to implant kind of the perfect candidates whenever possible and perhaps exclude others. And that’s just struck me as not at all appropriate when you’re working at a children’s hospital and parents are bringing their child there because they want everything done to help that child meet their potential. So that’s something we’ve always been involved in and probably have more experience than most centers and have amazing long-term outcomes. And these kids can be harder to evaluate, but in many ways they can be the most rewarding. It’s just very exciting when it’s a bit more of a Pandora’s box. I think some of those parents are the most grateful. We often hear parents of these more multiply involved kids say, oh, their hearing is their strength. It’s our way in. It’s the way that the therapists really can work with them, in other areas. So it’s something everyone at Lurie is really proud of. And it’s very rewarding.

Wendy:                             Yeah. And then in your recent study that you mentioned before “The safety and effectiveness of cochlear plantation of young children, including those with complicating conditions,” you mentioned in the study that you include children with other complicating conditions in your data, which is not necessarily common in other research studies.

Dr. Young:                        Yeah, they’re typically left out. I mean it makes the studies cleaner, easier to do. But these kids are getting implanted. I think they should be implanted more often and at a younger age. So I wanted to share our experience. I think it’s especially was important in our paper because we were looking at anesthetic and surgical safety and, these children, some of them maybe have increased risks because of unusual anatomy or medical conditions that raise their anesthesia risk class. We found that from an outcome standpoint that younger age was very important for them, just as for the uncomplicated, typically developing children.

Tatum:                              What are the barriers that you see to these kids getting implants? I think you mentioned a little bit the self-fulfilling process prophesy. What do you mean by that?

Dr. Young:                        When I started doing this, I can remember seeing families that had been turned down at other centers. Because the thinking was, well, your child may never have normal speech and language, so we’re not going to do this for you, which just didn’t make any sense to me. It’s not about getting to a specific outcome, although that might be our hope. It’s about letting enabling that child to achieve the most they’re capable of. I think that sometimes people confuse the child’s success with their success. I think that happens with therapists too. I mean back in the day and I think this still happens. Sometimes it’s hard for the kids that are complex to find a really good listening and spoken language therapist. I think these kids are intimidating. They’re not the kids that the therapists or the audiologists who do implant work we’re trained to work with. And if having a child with age-appropriate speech and language, is the definition of your personal success as a therapist, that’s going to be a problem. You’re not going to take those kids on. What’s fascinating in the Chicago area is some of the therapists who were the most experienced when I started are now at this stage in their life where those are the kids they really enjoy working with because they’ve been there, they’ve done that, and they really like the challenging cases and they feel that, that’s, you know, really what they should be doing with all of their experience, which I think is very exciting. And I think that, you know, surgeons I think can fall into the same trap and audiologists. So it’s not about us.

Wendy:                             Yeah, that’s an excellent point to remember for professionals that we have to look at the child and their growth. We think a lot here about growth over time with our students and children that we see in early intervention, we look at their rate of progress and growth over time and try not to always focus so much on the percent delay or you know, we really have to remember to be individualized and look at each child and like you said, not think about our perceptions of success and really tailor that to each child.

Dr. Young:                        Yeah, it’s hard. On the other hand, you can’t just accept if no progress is being made, you have to go through a troubleshooting thought process. I mean, it may not be because the child has x or y additional diagnosis. Maybe it’s another issue. Maybe they need a different approach for therapy. Maybe there’s a problem with that device. Maybe their programming needs to be changed. Maybe something else that’s going on that’s impacting things. There’s another diagnosis that needs to be made. There’s a different learning issue. It’s very complicated because sometimes there’s more than one thing going on. But I think as human beings we tend to latch onto the obvious and that may not actually be the issue.

Wendy:                             That’s why the team is so important. You talked about your team at Lurie. We utilize our team here. We utilize the team at Lurie as often as we possibly can because when you get into your bubble of just the therapist, the parent and the child, you lose the perspective of other people and that can be so helpful.

Tatum:                              And the nice thing about Early Intervention is a lot of our kids are receiving outside services from other providers such as occupational therapists or physical therapists that we can then collaborate with because they do think that a lot of listening and spoken language specialists do get very specialized. And I do see that training as a need for us, especially given how many kids with hearing loss have an additional need.

Wendy:                             One of your recent studies, and you just talked about children with other complicating conditions but another research study that you and your colleagues are involved in looks at the use of MRI to predict variability in speech perception after cochlear implant surgery. This is a hugely complicated, exciting, fascinating topic. So could you briefly explain this to us in a way that both professionals and families can understand?

Dr. Young:                        Yeah, thank you for asking. As I alluded to in the beginning, how kids do with implants, it’s not just about the implant, it’s about the brain and different people have different brains and different ways of processing information. We are not giving these kids perfectly normal hearing so the brain needs to make use of this information. And different brains are going to have different approaches.

One of the things that we know from all of the studies that have been done on implanted children and their progress over time, even those kids that don’t have any additional complicating diagnoses, that are implanted at a very young age, that get good therapy, the outcome on an individual basis is hard to predict. Although the kids all do better. We can’t predict before the implant who is going to achieve age-appropriate speech and language and who is going to struggle more. And perhaps, okay, maybe they are doing a lot better, but really they’re falling behind where we would have thought they would have been. Despite more than 20 years of research, there’s been no way to predict that. So we want to be able to predict that. Why? Because then we could figure out beforehand who’s going to need more intervention afterwards. And my goal would be to use this information to try to figure out what type of therapy is best for the kids that need more help. So what we believe is that the key is the brain because the brain is what makes use of this information. So our study is using different types of MRI to pull out information about the brain’s anatomy and the way the damage that’s been done to the brain by having hearing loss, the way that the different brains are networked, to kind of capture this information and use modern techniques of machine learning to build predictive models. We had a publication last year in which we were able to demonstrate that we were able to predict which kids would be high performers versus low performers after an implant. This is short term data, but who would take off like a rocket, who would struggle basically and that we were able to predict more accurately on an individual level. So we’ve always known that age of implant is very important. We’ve known that getting good listening and spoken language therapy is important, but that alone does not explain a lot of the variability of the outcome. And we looked at those things in our study and although it gave us information above the level of chance. With our MRI data, we were able to predict more in the 80% range. So it makes sense that using the brain to predict outcomes would be a better way to go. So we are very fortunate. We have received NIH funding to expand this study. There’s a huge amount of work left to be done, but we are very, very excited about it. The warning though is whenever you’re involved in research to predict an outcome it can be used for good or it can be used for evil. So one of the things that is very important is that this not in any way be used to determine who should get a cochlear implant because there is no doubt that with this information we’re going to be able to improve the outcome for children.

Tatum:                              I know we saw you present recently on this and you mentioned to be a participant in this study, it’s only like a slightly longer amount of time in the MRI. Is that true or how do you…

Dr. Young:                        So there are different levels of participation in the study. Parents can participate in the study just by agreeing to share their medical record. The standard MRI that we do at Lurie, that study alone without any additional time gives us a certain type of information for building one type of predictive model. But we also have parents who agreed to an extra 15 minutes of time in the MRI machine, which allows us to do functional MRI and something called DTI, which is a different type of MRI that looks at the brain in different ways. And we’re also working on building models to see if those types of MRI would be better at predicting outcomes. So we have parents that can choose to participate at different levels in this study.

Wendy:                             Do you find that parents are pretty willing to participate?

Dr. Young:                        I would say most parents are interested. The beautiful thing about the study is even the ones that, you know, some parents are just too nervous before surgery and before the MRI, but they can sign on a bit later.

Tatum:                              To share their medical record?

Dr. Young:                        To share the medical record, including the MRI. They won’t have the, the more research based MRI study. But the standard MRI study would help us. And right now we’re particularly focused on, children implanted under age four.

Wendy:                             How can we as professionals encourage parents to participate in research? I mean, we know how important it is. But what, what can we do to encourage parents to feel more comfortable to participate?

Dr. Young:                        You know, that’s a great question. I think that’s a question that, that’s being asked at Lurie in general by our growing research center, the Stanley Manne Institute, because I think it is important to, you know, make parents more comfortable and, I think many parents want to give back. They can do so in our study just by simply sharing their medical record without anything additional being done. But we’re grateful when they want to share more. I don’t have a simple answer for you. I think it is actually a research question in itself.

Wendy:                             *laughs. More work for everybody.

Dr. Young:                        More work for everyone. Yeah. But, I think there can be some real cultural barriers to that as well.

Tatum:                              Yeah. And I think barriers from grief too. You mentioned sometimes they’re not ready at the time of the surgery by I like how this study they can decide later on.

Dr. Young:                        Sometimes they’re more relaxed after the surgery.

Tatum:                              Yes, I’m sure. Is there anything that we have not touched on that you feel is important for our listeners to hear? We’ll ask you one more question.

Dr. Young:                        I think we’ve covered a lot.

Tatum:                              Yes, we have covered a lot. We could definitely have you on again to cover more. Before we close out, we like to ask our guests if they have any advice. Our podcast is listened to by both families and professionals. So it could be for either families or professionals, a combination of both. Any, general advice you have for our listeners?

Dr. Young:                        This would be for a parent or a professional who’s working with a family that you think the child is an implant candidate and they’re evaluated and they’re told that they’re not. I think it’s important that people recognize that different centers can have different criteria, they can have different philosophies. And I think that sometimes another opinion is a value. The same thing is true when children are not making progress afterwards, sometimes another opinion is needed in that regard as well.

Tatum:                              That’s great advice.

Wendy:                             Yeah that is great advice.

Tatum:                              I have a quick follow up question. How do you recommend a professional would broach that with a parent and still be respectful to the center that you are at.

Dr. Young:                        I think simply to say that, that, that there are different, that, that there isn’t some sort of, you know, set of laws as to what every, how every center should operate in. I think people, many people know that you can get different opinions. I think the concept of a second opinion is, is out there. So I think it can be said with in a respectful way, it’s just that, you know, different centers can have different criteria, different philosophies and consider a second opinion.

Wendy:                             I’ve definitely made that suggestion before. I don’t know how tactfully I’ve done it, but you know, because also, different families work differently with different teams and we want them to be as comfortable as possible. So if they’re not finding what they’re looking for in one center, we can say, why don’t you try this? Or, you know, it’s not easy to do, but it can be done.

Tatum:                              So why don’t we wrap things up there. Thank you so much for joining us, Dr. Young. We have learned so much from you and it’s been a really fun conversation.

Dr. Young:                        Thank you. It’s the pleasure was all mine.

Wendy:                             Yeah. Thank you for coming.

Tatum:                              Listeners, we would love to hear from you professionals, how have you counseled families or children with hearing loss prior to and after a cochlear implant surgery. Families what was your own a child’s cochlear implant surgery like, and also just all listeners, um, has and as any of this research been new to you, were you aware of it before? What are your thoughts?

Wendy:                             We will put the links to the research studies in our show notes so professionals can access and read those.

Tatum:                              So thank you for joining us for another episode of All Ears at Child’s Voice. Be sure to join us for our next episode. We release episodes every other week on Wednesdays.

Wendy:                             If you’d like to reach out to us, you can find us on Twitter and Instagram. I’m @wendydetersSLP and you can find Tatum at @tatumfritzSLP

Tatum:                              You can also email us at podcast@childsvoice.org and you can find episode show notes and archived episodes at our Child’s Voice website, childsvoice.org

Wendy:                             And if you’re interested in learning more about Child’s Voice, Child’s Voice is on Facebook as well as Twitter and Instagram with the handle @childs_voice. No apostrophe.

Tatum:                              We’ll see you next time. Bye.

Wendy:                             Bye.

CV Students:                    BYE THANKS FOR LISTENING.

Elise:                                  Thanks for listening. Be sure to join us in two weeks for our next episode on September 18th. Wendy and Tatum will be interviewing Dr. Anne Marie Tharpe from Vanderbilt University who will be talking about mild and unilateral hearing loss. It should be a great discussion so don’t miss it!