Parents' Perspective: The Decision Making Process for Bone Anchored Hearing Systems for Children

This course is an edited transcript of an Oticon Medical live webinar on AudiologyOnline.  Download supplemental course materials.

Liz Presson:  At Oticon Medical, through our work with patients and their families, we understand that the decision-making process for bone anchored hearing solutions for children (and for hearing solutions for children, in general) is a journey that is not always easy to navigate.  It is an incredibly important journey for parents, in order to help their children achieve their full potential. Instead of talking about that decision-making process as a professional, I am joined by Melissa Tumblin and Anne Pipes who will provide you with their perspectives as parents.  

Focus on Patients' Perspectives

Oticon Medical is focused on delivering life-long patient outcomes based on innovative solutions and support.  Our promise is, “Because Sound Matters”, and it means opening up the whole world of sound to as many people as possible, and ensuring that they have a superior sound experience.  We are passionate about this promise because life truly is not the same without sound.  To acheive this promise, we emphasize getting to know our patients, really understanding them, and then working from their perspective in developing our solutions and support. 

Everything that we do starts with our patients.  Understanding patients is our core value, and our founding philosophy is People First.  Our innovations are created to meet patients’ needs in daily life. We do research in close partnerships with real patients in clinics.  We ensure that patients are involved in testing and in product development.  We collaborate with local patient organizations and we facilitate patient networking groups online. 

Bone Anchored Hearing Systems

Here is a quick overview of a bone-anchored hearing system (BAHS).  The Oticon Medical Ponto (Figure 1) is made up of three main parts.  The largest part is the sound processor, which is the external piece.  The processor is attached to an abutment, and the abutment connects to a small titanium implant.  The Ponto and other BAHS use the body’s natural ability to transmit sound through bone.   

Figure 1.  Oticon Medical Ponto BAHS: sound processor, abutment and implant.  In the background is the Oticon Medical Streamer.

We have literature available if you are interested in learning more about the technical details of the Ponto, but today we are going to focus on the journey of getting a BAHS, rather than the technical details.  I will provide links to further information and resources at the end of the presentation. 

The following video gives you a brief overview about Ponto.

FM Systems

Noise, distance, and reverberation are three obstacles that impact our abilty to hear in everyday life.  FM systems, which work in conjunction with the Ponto as you saw in the video, can help to overcome these obstacles. 

FM systems help people to hear in noise and at a distance by delivering sound directly to the ear.  Reverberation is one of the most common obstacles and usually happens in large spaces such as classrooms, lecture halls, places of worship, and theatres, for example.  With an FM system, sound directly travels to the ear so it does not pick up the reverberation of the room. 

An FM system consists of three parts: the sound processor, a transmitter, and a receiver.  Once those three pieces are in place, you have to make sure that the receiver is compatible with the sound processor and the transmitter.  Oticon audiologist, Laura Carr, recently presented a webinar entitled, Overcoming Distance and Noise: Strategies for Successfully Utilizing FM with the Ponto System, which focuses specifically on using FM with the Ponto system.  I would encourage you to watch that recording for more information.

Oticon Medical Streamer

The Oticon Medical Streamer works with any Ponto Plus BAHS, which is the one presented in the video.  The Oticon Medical Streamer can be used with devices like cell phones, tablets, GPS systems, and it also connects with the Connect Line app, which allows you to control the processor from the app.  We have a number of videos on YouTube that walk patients and audiologists through FM and the Oticon Medical Streamer, which many are finding very simple and helpful. 

The Oticon Medical Streamer is important for us today, because it enables FM capability for Ponto Plus processors.  Ponto Plus users can connect an FM receiver to the Streamer to utilize the functionality of FM without having to attach the receiver directly to the sound processor.  Many students are relying on FM functionality to transmit the teacher’s voice in the classroom or a lecture hall.  Attaching an FM receiver to the Streamer is a discrete way to enjoy FM and utilize that functionality.  I want to share these two things because Anne and Melissa will share how Ally, Melissa’s daughter, and Winslow, Anne’s son, utilize both FM and the Oticon Medical Streamer in the classroom and at home. 

Oticon Medical Community

There is no better way to understand our patients than to create direct lines of communication - between Oticon Medical and patients or potential patients, and also between community members. The mission of the Oticon Medical Community is to give people a place to find and connect with each other and make this journey a little bit easier and it more enjoyable.  Both of our presenters today are active members of this online community.

In the Oticon Medical Community, Ponto users can share information.  They can share their stories and they can give us feedback on product development.  I encourage you to visit these pages and engage in the conversations; whether you are considering a Ponto for yourself, or you are an audiologist, or you or your child currently wear a Ponto.  These social networks have given us a great way to connect with people and understand their experiences.  Visit our blog at boneanchoredhearingaid.com or Facebook at www.facebook.com/oticonmedical.  We are also on Instagram and Twitter. 

And now I would like to introduce our guest presenters.   Melissa Tumblin is the founder and executive director of Ear Community.  She is the mother of Alyssa or “Ally” Tumblin, a child born with right-sided microtia and atresia.  She is the founder of the Microtia and Atresia Support Group on Facebook.  It is a thriving group that is helping so many people.  She has spoken at a number of different surgical conferences, presented at the Educational Audiology Association (EAA) conference, and has done other webinars on AudiologyOnline. Melissa has over 15 years of medical device marketing experience, and today she will discuss her experience in selecting the right bone-anchored hearing device for Ally. 

Our second presenter today is Anne Pipes.  Anne is the mother of Winslow Pipes, a child with bilateral severe to moderate hearing loss due to Pierre Robin Sequence and Stickler Syndrome.  She is also a founding board member of Little Ears Hearing Center, a non-profit pediatric audiology clinic.  She is trained as a parent advocate through the Family Information Network on Disabilities.  She has worked as a Guide By Your Side through the Kentucky chapter of Hands and Voices, has spoken on a number of parent panels, and shared parent perspectives and concerns with audiology students. 

Thank you to Melissa and Anne for sharing their time, expertise and perspectives with us.

Parent Perspective: Melissa Tumblin 

Melissa Tumblin:  Thank you for the opportunity to share my experience about trying to help my daughter Ally hear well.  Ally has a conductive hearing loss in her right ear.  We did not know about a bone-conduction hearing device until Ally was about 10 months old.  We were not informed.  Ally’s conductive hearing loss is the result of a congenital birth defect known as microtia and atresia.  As a quick review, microtia is when the outer ear does not fully develop during pregnancy and atresia is the absence of an ear canal.  Ally’s conductive hearing loss in her right ear is at a severe level, while she does have normal hearing in her left ear.  However, even though she has a unilateral hearing loss with normal hearing on one side, Ally is experiencing many delays in her communication, speech, and in the processing of information. 

Prior to being informed about the bone-anchored hearing device, we did try many other solutions.  One of them was signing.  I chose to sign with Ally when she was a baby mainly because I was trying to find a way to communicate with her.  Quite honestly, Ally did not start speaking until she was three years old and I had to find a way to help her. 

We did have an Individual Service Plan (IFSP).  We had the opportunity to have early intervention therapists come to our home and help Ally with physical therapy, occupational therapy, and speech services.  They were all amazing and helped her immensely.   In addition, we went to many doctors’ appointments trying to figure out more information about microtia and atresia and how we could help Ally’s hearing loss. I also went online to other support groups trying to find options. 

The picture in Figure 2 shows Ally when she first was aided.  This day we were given the opportunity to wear a Cochlear Intenso loaner unit.  It was absolutely amazing.  The audiologist put the Baha on Ally’s head and as she switched it on, she whispered behind Ally’s ear and said her name, “Ally.”  Ally whipped her head around and she had the biggest smile on her face.  We were crying tears of joy.  Just so everyone understands, prior to this whole experience with the Cochlear Intenso, Ally did not have much facial expression.  I think she was having trouble hearing me.  She would not respond to clapping hands, dropping pots and pans, or if I talked loudly to her.  I knew from this moment that this was “seeing is believing.”  I saw a direct reaction in my own child.  No one else would know this, but I did as her mother.  It was an amazing experience. 

Figure 2. The first day of hearing with a BAHS for Ally.

It was not just the “seeing is believing” where I saw the reaction on my daughter’s face, but we also have it documented.  Figure 3 shows one of Ally’s first audiograms, and this was her aided with the Oticon Ponto Pro.  At that time, she had a moderate hearing loss in her right ear.  Being tested while aided proved that she has benefitted from the Ponto, because she is hearing within a normal hearing range.  This is proof to me as well that this device was doing something positive for her. 

Figure 3. Audiogram showing conductive hearing loss in the right ear, with aided results in the normal range while using the Oticon Ponto Pro.

Still today, when she is not wearing her hearing device, she has trouble localizing sound.  We could be on the playground, and I will be calling for her, and she will not respond.  She looks everywhere, but in the direction of my voice.  Oftentimes when we are at home and I take the hearing device off to give her a little break, she will say, “Mommy, what did you say?  Can you repeat that?  I can’t hear you.”  I know she is hearing better when she is wearing the hearing device. 

When we were finally informed about a bone conduction hearing device, I wanted to try everything.  We tried Cochlear America’s BP100, the Oticon Medical Ponto Pro, and I drove down to the Sophono office in Boulder and was able to try their Alpha I.  We also trialed Cochlear America’s BAHA 4 and the Oticon Medical Ponto Plus.  When I say “we” trialed, keep in mind that Ally was an infant to toddler at the time we were first trying these devices.  She could not tell me if she was hearing well or what she was not hearing.  I wanted to experience what my daughter was going to be hearing or what she was not hearing.  I would wear her devices out to restaurants.  I would wear them in public restrooms to hear how loud the toilets were flushing.  I wore them at home.  I listened to water running in our faucet and the TV in the background.  I just wanted to experience what she would be experiencing.  We were surprised. 

With the Ponto Pro, Ally not only left it on her head more, but I thought it sounded clearer.  The quality of sound was very good.  Then we ended up aiding Ally on the Softband with the Ponto Plus.  Again it has very clear sound, it is very easy to use, and there is little to no feedback.  When she wore it, she was responding very well, lifting her head and smiling.

Knowing that we liked the Ponto Pro and Ponto Plus, this is what Ally is currently aided with, and it is a processor of our choice.  It is because the sound quality is amazing.  Now Ally is over the age of five, and we realize that she could be a candidate for having the Ponto Plus implanted.  While we are leaning toward that, at the same time, I would like to leave that decision up to Ally.  When Ally is ready, we will be ready, and that is okay.  She is already benefitting from wearing the Ponto Plus on the softband, and I am excited about that because I know she is hearing her best. 

There are some other things that we like about the Ponto Plus with the Streamer, and one is the compatibility with FM systems.  At Ally’s school, she wears the Streamer with her FM system, and she utilizes the Phonak Inspiro transmitter.  We know that the Streamer is also compatible for Roger as well, which is their newest technology.  She will be hearing very clearly.  It assures me that Ally will be able to hear well in class with her peers and give her the choice to have the same opportunity to hear as they are, without worrying about her struggling.

One of the other options that comes with the Ponto Plus is wireless capability.  We recently just discovered this, because with a young child, we do not use all these fancy gadgets and apps, but we did discover pairing it to her tablet.  What a relief!  We were traveling on airplanes or even at home, and I had some bone conduction headphones that I tried on her.  When Ally tried to wear them, the headphones kept slipping off due to her only having one ear.  They do not stay on her head very well.  Knowing she can listen to her tablet wirelessly through her Streamer is great.  She is already hearing through her hearing device, and now we do not have to worry about something else slipping around on her head.  She is very happy right now, and it also makes her feel like a big girl with the tablet. 

Helpful Tips for Parents with a Child Wearing a BAHS

I thought these suggestions about how to wear a BAHS might be helpful, as it comes up from parents very often in forums.  We have been there as Ally has gotten older.  Trying to wear a softband head band is not easy on a young child.  Here are some suggestions. 

As a parent, it is okay to be persistent.  You do not have to force your child, but do not give up.  There are ways to make things easier when you are trying to keep the softband on your child.  For example, set a timer.  Maybe set it for 20 minutes and see if your child keeps the hearing device on.  If they tear it off their head, say, “It’s okay.  We are just going to try it again in a little bit,” and then try the timer again. 

Make it fun.  Lots of parents will try and sing or play music when their child is wearing their BAHS on the softband.  You can also show them pictures of other children wearing these devices so they know that there are others out there, and this is not something that is bothering them or something different that they may not take to very well. 

In a young child, anywhere from infancy to toddler, it is best to wear the bone-anchored hearing device on the softband when the child is in the upright position.  When children are lying down, they are going to have a lot of feedback.  Furthermore, it is going to come off.  They really need to be sitting upright, whether that is in the backseat of the car or in a stroller. 

Another tip is for parents not to stress out.  You have to make it easy to make it work.  For example, if your child is eating lunch and you are panicked that they are going to put peanut butter and jelly in the processor or saliva in the microphone, just take the processor off.  Make it easy on yourself, and then when they are done with lunch, put it back on.  It is okay to give them a break as long as it is brief.

It is great to wear the BAHS during distractions.  A BAHS on their head is on a strap.  They may want to pull at it or touch it.  You can easily distract their focus and put it on other areas.  Make sure they are wearing it when they are out and about at the grocery in a cart, at the zoo, at the mall, or during a therapy session with their therapist for speech services.  Also always remember that a BAHS can only help; it is not going to hurt your child’s hearing. 

Make it Fun

When we say make it fun, there is so much you can do.  Much of this is just personalizing the device.  Make it more like them. It helps with hearing device acceptance. For Ally, we have a doll that has a matching softband BAHS.  There are fun soft bands with different prints.  We have a butterfly clip that I put in place of the regular clip.  There are fancy ways to make the processors look pretty.  The hearing device companies offer skins and stickers.  You can do your own thing and make it look fancy with pearls and overlays.  You can go to Michael’s, Jo-Ann Fabrics, or any of those craft stores and buy adhesive beads and stickers, which are also seasonal, so you can make it fun. 

I hope that these suggestions can help someone else with their child because it is not easy, even though we are doing the right thing.  Thank you.

Parent Perspective: Anne Pipes

Anne Pipes:  My son is Winslow.  When Winslow was born, he failed the newborn hearing screening.  Soon after he was born we realized that there were some other issues.  He has Pierre Robin Sequence and Stickler syndrome.  He was having some breathing and eating issues.  We pushed his failed newborn hearing screen to the back burner for a month while we got him breathing and eating.  Then, while he was in the hospital having other surgeries, we thought that we really needed to follow up on his newborn hearing screening, despite the fact that people were still telling us that babies fail newborn screenings all the time.  If you are a parent and you know other parents whose children failed their newborn hearing screen or if you are an audiologist, get the word out how important it is to follow up.  It may be nothing, or may be an opportunity to get these children sound input as early as possible. 

As a result of his craniofacial disorder (Pierre Robin Sequence), he has malformed ossicles and malformed ear canals.  His ear canals are severely stenotic.  They twist and turn and narrow significantly, but he does have ear canals.  Because they twist and turn, he also has a malformed ear drum.  The ossicles are fused together, funny-shaped not in a good way, and stuck to the side.  Those little bones in his middle ear are just not doing the job they need to do to conduct the sound to his cochlea and auditory nerve. 

He has a conductive hearing loss, but now they feel as if he has a mixed hearing loss.  Figure 4 shows his audiograms.  The older audiogram is on the left, with a more recent audiogram on the right.  His hearing loss is severe, rising to moderately-severe.   Because of his stenotic ear canals and his middle ear issues, behind-the-ear (BTE) hearing aids were not a good choice.  He was not a candidate for cochlear implants.  We were told at a very early age that bone conduction aids would be a good choice.  We immediately got him a loaner device, which was the Baha Divino. 

Figure 4. Winslow’s audiogram.

Figure 5 shows him sitting up, where we had a lot more success; if he was sitting up or propped up we would not get any feedback.  Distractions are always good. 

Figure 5. Winslow sitting up wearing a Baha Divino.

Making the Choice

We started out with the Divino and moved on to the Intenso when it became available because of the degree of his hearing loss.  We did achieve better results in the testing booth with that.  You will notice in Figure 6 that he was wearing the processor in the front and that he is only wearing one.  Even though Winslow has a bilateral hearing loss, the norm in our region was to just have one aid for a bilateral conductive loss.  In many areas of the United States or around the world, that is not typical.  Many children with bilateral loss have two aids even on a softband.  However, in our area at that time, we did not even realize that was choice. 

Figure 6. Winslow wearing Intenso bone conduction processor on the front of his head.

Winslow wore this one on his head all the way through preschool.  If we put it on behind his ear where it is supposed to sit very nicely, he would swing it right around to the front.  I think for him, he was in more of a direct line with what he was hearing.  Whenever he would sit in a car seat or stroller and lean back, he did not have feedback because it was on the front of his head.  He loved wearing it, so we were not going to fight him with wearing it up front. 

We used the Divino, the Intenso, and a very short amount of time with the BP100.  At a very young age, Winslow became very opinionated about his devices, and he made it very clear when we took the BP100 home that he was not happy with it.  It was not strong enough.  We went back to the Intenso until the BP110 was introduced.  When the BP110 came out, he wore that until he was about 7 years old.  I know he was eligible for surgery at age 5, but Winslow was content and comfortable wearing his headband.  Around the age of 7, he started to feel a little self-conscious about having a headband on.  It draws a little bit more attention at that age than as a toddler.  Kids at school were asking about it, and he thought he might be ready to get the implant. 

As you know, there is a limit to how good the sound quality can be when the processor is worn on the softband.  The quality of sound once the device is implanted is far superior to what is achieved on the headband.  As his school was getting more involved and complex and as his skull was getting thicker, the quality of sound and the volume that we could get from a headband was starting to inhibit progress.  We decided to schedule surgery. 

Thankfully, when we went to see the surgeon, he explained all the choices.  We talked about the Attract system, which uses a magnet.  We talked about a post (abutment) with the BP110, and our surgeon mentioned that some of his softband users were using the Ponto system.  We looked at all of this information.  We had not heard of the Ponto yet.  We contacted our audiologist who immediately set up an opportunity for us to meet with an audiologist from Oticon and have a trial of the Ponto Pro power.  We trialed that alongside the BP110.  

For us personally, Attract was not a good choice due to the degree and severity of Winslow’s hearing loss, and because we were not getting enough strong amplification with the softband anymore.  When you are using the Attract, there is an impedance issue through the skin of about 10 dB.  That loss of amplification is mitigated on the abutment of the implant.  For Winslow’s degree of hearing loss, a skin impedance was not a good option for us. 

We knew we were going to proceed with an abutment.  Again, Winslow has strong opinions.  He is a very devoted wearer of his devices.  He wears them to bed.  I am not allowed to take them off until he is snoring.  He definitely had an opinion on which device he wanted to have implanted.  I tried very hard to stay out of it.  I had my own concerns and opinions, and we talked about them. 

One was the quality of sounds.  The BP110 versus the Ponto Pro Power was what he was trying at the time.  He had a preference on what he felt sounded better.  At first, he was a little concerned because the Ponto sounded a little different.  If you remember, he had been wearing some version of the Cochlear Baha processor for about seven years.  I equated it with drinking Coke all your life and trying Pepsi.  At first, he was not sure how he felt about the sound change whenever he tried on the Ponto.  We did not dictate to him. 

Every school morning, he could choose what he wanted to put on his head.  At first, he only wanted to put the BP110 on his head, and that is what he wore to school.  Then one weekend he wore that Ponto Pro Power all weekend by chance, and then Monday he woke up and decided to wear it to school also.  Once he made that switch, he decided he preferred that.  He felt like he was getting the volume he wanted with the Ponto Pro Power.  Winslow’s audiologist sets his device based on his pure-tone responses.  She has learned to set it to those parameters and then turn everything up just a bit.  In the past, we would have it set and within the week, we would be calling her saying it was not loud enough.  She has learned from us to always give him a bit more volume because he is prefers a lot of volume. 

He wore the BP110 for a long time and loved it.  We called it our little Beepee, because it beeped a lot and had feedback.  We thought that that was part of the package with bone conduction devices.  It was something with which we struggled, especially at the settings that were required due to the severity of his hearing loss.  That was the biggest “aha” moment for Winslow and me when he was wearing the Ponto Pro Power.  He was not getting feedback when we were lying in bed at night reading our books.  We did not constantly have to reconfigure the way he was lying or sitting.  He was so excited to not be having any feedback issues. 

He did not care about feedback as much as I did.  At the time, the Baha 4 was coming out, and the abutment that they were putting in children’s heads was not going to be compatible with anyone else’s device.  Prior to this, there were universal posts.  If you had a post in your head and it had an abutment, you could wear a BP110 or you could switch to a Ponto device.  At that point, if we chose to get a BP110 implanted, it would not be compatible with the Ponto should we choose to change devices in the future.  As a mother and as a consumer, that really bothered me.  I did not like the idea of surgically implant something in my child’s skull and being locked into one company.  I did not think it was appropriate and it showed a lack of confidence in a product.    Put a universal post in and let us, as consumers, decide what we like.

When we contacted our audiologist and asked about the Ponto because we had not heard of it, there lots of phone calls to get hold of a loaner device.  There was back and forth communication to clear the confusion as to whether or not the post being implanted was proprietary.  I was a nervous mom.  My child may have had five surgeries leading up to this, but every surgery is scary, and I had a lot of questions.  Finally, an audiologist with Oticon, sent me an email and said I sounded confused.  She offered to come down and meet with me and our audiologist to discuss my questions.  She was going to bring the device and we could talk about it to make sure we were making an informed choice.  It blew me away that she took the time to do that.  It was very meaningful to me, and the customer service has been exceptional from that point and forward. 

My other concern was ease of use.  The battery door on the BP110, in my opinion, was poorly designed.  I was called into my son’s school to walk them through how to change a battery because they were having trouble getting the battery door slide open and back on safely.  I think they were a little nervous because it is an expensive device. 

Surgery Considerations

Next, we had surgery considerations.  We waited until he was older than five.  Sedation is always a concern.  We had this done at a children’s hospital, which I feel are top notch, so we were in a safe situation when he was sedated.  Winslow has airway issues and other things that make sedation a difficult thing, and we had no trouble whatsoever.  The surgery itself was very short, and it was very simple. 

Other reasons we decided to go forward with surgery were vanity and the quality of sound.  We talked about how sound is much clearer on the post than on the softband.  In fact, once Winslow had his Ponto Pro Power implanted and activated, he decided within a couple of months that he was ready to have his left side done, and he wanted to move forward with scheduling that surgery.  It was the first surgery that he had ever requested, and we were happy to do so.  He loves being a bilateral Ponto wearer and hearing from both sides.

Using the Pontos Today

Winslow uses a Streamer, but he is not a fan of any FM system.  He decided at a very young age that he hated the FM and it was not going to work.  We will go on to fight that fight another day.  In the meantime, he wears a Streamer and it is connected to a Bluetooth microphone that his teacher wears.  His Streamer is connected also with a Bluetooth or audio cable to the iPads, laptops, and desktop computers.  All the electronic devices that are used in the classroom for which his friends use headphones, he will use either the Bluetooth or audio cable connected to the Streamer.  He is super tech-savvy and knows how to connect all of those devices. 

Bilateral implants were a big deal.  He complained a lot about sitting in the cafeteria or in group setting in the classroom, and listening to the person on his right, but not noticing the person on his left talking.  The bilateral implants have been very beneficial.  He is able to localize sound better now.  The benefit of the bilateral implants also that his left side, which is the newer device (Ponto Plus Power), is connected to his Streamer.  He will have that one connected to his teacher’s mic and on the other side, he can hear all the incidental conversations and conversations in the classroom.

At home, he uses the Streamer connected with the Bluetooth to his iPod or to our iPad to listen to music or watch videos.  He also has the ConnectLine box to watch TV, and it has saved our family’s sanity to not have the TV cranked up all the time.  He is also an avid user of captions.  We have had captions on in our house since he was a baby.  As soon as we realized he had a hearing loss, we turned on those captions.  They annoyed everyone at first, and now we all love them.  Captione isHe ing is not essential, but I feel like it is good support also. 

He also uses the Streamer connected to my cell phone to talk with out-of-town relatives.  Prior to having the Streamer, we used the speaker phone, but he did not feel like he had privacy.  Being a 9-year-old boy, that is super important all of a sudden.  He used to do video chat, but that was hit or miss as far as the connectivity.  But now he likes using the Streamer to talk with his friends, and he does not feel like we are listening in.  We have been very happy with his whole system.

Further Resources and Contact 

Liz Presson:  I want to leave you some information on how to get in touch with Oticon Medical.  You can visit our website at www.oticonmedical.com.  Our community sites include our blog at www.boneanchoredhearingaid.com and a thriving community on Facebook at www.facebook.com/oticonmedical.  We can also be contacted via email at info@oticonmedicalusa.com

Questions & Answers

What one question do other parents ask you most often?

Melissa: There is more than just one question that comes up frequently. First of all, they wonder if a bone conduction hearing device is going to hurt their child’s hearing.  I always tell them that it can only help.  I think there is a misconception with over-amplifying.  They think it is making things worse, when it is actually just helping them.  The other one is that they are scared about surgery.  As soon as age five, the child can be implanted.  The parents worry about maintenance and preventing infection.

Anne: I feel like the surgery concern is a big question.  As far as choosing a device, occasionally people will ask, “What do you mean that is not a Baha 4?”  Then we have a conversation about products.  To that effect, I would say if their child is old enough to try the devices and make a judgement about them, then have the child try them.  I also tell them to not be afraid to put the device on after their child goes to bed at night and wear it around the house.  Put in some ear plugs, put on the softband, and just see what you think of it and compare them.

As far as surgical concerns, it is hard for me to be clearly objective about that because we have had other surgeries.  For a lot of parents with children and bone conduction devices, this might be their first surgery.  It is understandable that it is scary and serious to have a surgery involving the skull.  I think it is important to remember that even though it seems really close to the brain, they do not get close to the brain.  It is a simple procedure and recovery is relatively easy.  I think the surgical concerns are understandable, but should not be prohibitive. 

The quality of sound post-surgery is amazing.  My son says it is so much better.  When he wanted to get his left side done, I suggested he wear a loaner on the softband on the left side while he was wearing the implanted one on the right side.  He immediately and firmly said no.  The sound is just so much better on the post.  I checked with the surgeon and audiologist to see if he had to wear it on the softband before he has surgery.  They assured me that if he knew what he wanted for his second side, then it was fine. 

Both of you mentioned the threshold of five years for implanting.  Did you have other considerations that helped determine if your child was ready to implant?  Outside of the surgical considerations, were there other things that helped you set the criteria? 

Anne: I think the fact that Winslow had had surgeries before helped us.  We knew more of what we were getting into surgically.  We felt like he was outwardly showing us that he was ready to get rid of the headband.  When he got his first side implanted, it was a delicate push and pull.  He wanted to get rid of the headband, but I do not know that he was ready for sedation.  He had had surgery before and he knew was sedation was.  He knew that he did not like it.  Surgery is not fun. 

My advice to parents would be that even though their child may be five and can technically be implanted, I do not feel like it is necessary to rush into it.  It will be different for every child.  You know you child better than anyone.  If you feel like your child is constantly fighting you about wearing the softband, does not enjoy wearing the softband, and prefers to not have amplification, I do not know that surgery will fix that problem.  If your child is complaining about the softband because of social issues or vanity issues, that could be something that you could put into play when you are discussing surgery.  Show them lots of pictures.  We were pretty upfront with Winslow about what it would involve, but only because we knew he could handle it.

I would also recommend that everyone who has surgery scheduled look into the Child Life program at your children’s hospital.  Many times, children’s concerns are less about the actual device and placement, and more about having surgery.  The Child Life program can help you deal with that. 

There are some considerations that you need to realize, especially when you are getting your child implanted at a younger age.  Know that the after care for the post and the regular care for the post is going to fall on you as the parent.  Everyone will have to be on board with what cleaning the post involves.  Letting your child talk to other young people who have had implants is a good idea as well.  You might want to check beforehand to make sure they will not say anything you do not want to hear.  It will be different for every child.  I would say do not rush. 

Melissa, you had mentioned that this was something that you would want Ally to decide.  Are there any other things, in addition to what Anne said, that you would add to indicate readiness?

Melissa: I have learned to go through the emotions over the years by getting to know Ally from an infant to now a little girl who has preferences.  I now realize that it is her ear.  It is her hearing, and I feel comfortable with her making that decision.  While she is only six, as Anne mentioned, she has started to have preferences already.  The day will come when she is in school PE, and her softband is going to slide off her head.  She will not like that.  Even if she keeps it for a few years into middle school, she may want to be in sports, and the softband may make her feel like she cannot do everything that she would like to do.  That may push her toward a decision of having a surgery.

I have lots of friends who have had surgery, and each person is different.  I sometimes compare it to pierced ears.  Some people’s ears handle posts and earrings better than others, and some people can only wear good posts.  Some people deal with infections and some people do not have the infections.  There is always a way to manage it.  We are not ready yet for surgery, and that is okay.  There are a lot of people who worry about surgery, and even though it is performed over and over again and we know she will benefit, the time is not right yet for us, but we will know when it is. 

Does your child have to wear the Streamer at all times if they have a Ponto?  Do your children mind wearing the Streamer around their neck?

Melissa: If the child has a Ponto Pro, they do not have to wear the Streamer.  It is the Ponto Plus that comes with a Streamer.  However, they do not always have to wear the Streamer.  For example, my child will go out to recess or in PE.  She will take the Streamer off because it might flop around her neck, and she does not need it at that time.  I worry about it at recess falling off and getting trampled.  The teachers and audiologist know that she takes it off during this time, and when she comes back in, it reengages it automatically. 

I was worried about the Streamer bothering Ally when she wore it around her neck, but she is doing fine with it.  She does not seem to think that it is a problem.  There have been a few times we have had to reorder a new neckloop because they became mangled, probably from twisting.  That is the only downside I have noticed about the neckloop. 

It is really no different than the Phonak MyLink.  It is the same type of idea.  You do not always have to have it around the neck.  As the child gets older and they are responsible enough, there is a LinkIt and a LoopIt.  You can have it programmed to where you can have it in a purse or pocket, instead of on the loop. 

Anne: You do not have to wear the Streamer for Ponto to work.  All the Pontos work with or without the Streamer on.  You have to wear the Streamer if you are wanting to use a Bluetooth connection, an FM connection, or a ConnectLine with your TV.  My son is not a big fan of it, but he has some sensory issues and does not like things around his neck.  He hates wearing the safety line on the Ponto as well, much to my chagrin. 

He will wear the Streamer when he is motivated.  When he wants to listen to music or talk privately, all of a sudden the Streamer does not bother him.  When he is sick of hearing the teacher talk in his ears about fractions all day, all of a sudden the Streamer drives him crazy.  He is definitely particular in his likes and dislikes, but I do not think the Streamer necessarily bothers him.  He does not like wearing the Streamer in PE because it bangs on him when he runs.  He generally does not fight back about it, just chooses when he would like to wear it most.