Following Shay’s hearing journey: from Softband to implant at age 11

Michelle and her daughter Shalynn, 11

Michelle and her daughter Shay, who wears a Softband.

By Michelle Robinson

When my daughter Shay was around one year old, I noticed that she was not reacting to loud noises like other children, so I decided to take her to have her hearing checked. Her family and I found out that she had moderate hearing loss in her right ear and that she had had it since birth. Although doctors did a hearing test when Shay was a newborn, we were not informed at the time that she failed it.

A short time after learning of Shay’s hearing loss, we made an appointment with our local ear, nose and throat specialist. The specialist confirmed that she had moderate hearing loss and nerve damage to her right ear. She needed a hearing aid. Shay received her first among many hearing aids at the age of two. In the years that followed, she has had several hearing exams, but due to her young age we were uncertain about what she was truly hearing.

When Shay was nine and a half I took her in for a routine hearing check, where we found out that her hearing loss was much more severe than we had thought. We learned she couldn’t hear voices and typical speech patterns. It turns out a normal hearing aid was not working for her at all.

My heart sank with this news. Shay not being able to hear out of her right ear was a huge concern: she was struggling in school because she couldn’t hear the teacher; it was difficult for her to ride her bike or play outside because she couldn’t hear when a car was coming up behind her.

The doctor explained to us the process of bone conduction, and he said he believed Shay would be a perfect candidate for the Baha System. We made an appointment right away with the Michigan Ear Institute. Doctors there confirmed that she has severe mixed hearing loss (a combination of sensorineural and conductive hearing loss) in her right ear, and that a normal hearing aid would not work for her. We discussed the Baha System and decided that it would be our best option.

After doing some investigating I learned about the Baha Softband, normally used for very young children. Shay has had the Softband for a little over a year now. It was like night and day: finally, she could hear! I’ve included a video of her hearing with the Softband for the first time with this blog. After a little more than a year and after seeing the difference it has made in her life, we knew it was time to replace the Softband. This December at the age of 11, Shay will have implant surgery to start her new life with the Baha Connect System. She is so excited to keep hearing better!

Michelle Robinson lives in Cheboygan, Michigan, U.S., and is the mother of 11-year-old Baha recipient Shalynn Robinson.

Treating hearing loss after acoustic neuroma removal

QuestionI had an acoustic neuroma removed in 2002. The tumor was also involved with my facial nerve. While removing the tumor mass they had to take out the hammer, anvil and stirrup.

Will a Baha work in my situation? // Kevin

Answer: Hi Kevin, thanks for your question.

Removing an acoustic neuroma can lead to single-sided deafness (SSD). The Baha System uses the body’s natural ability to transfer sound.  Instead of trying to push sound through the damaged area in the outer or middle ear, it reroutes the sound directly through bone, from the damaged ear to the working inner ear on the other side. This makes it easier to understand speech in noisy situations and reduces the attenuation of sounds from the deaf side So the bone conduction implant actually sends the sound through your skull bone instead of via air.

For instance, if you scratch your head you can hear it, right? The same with bone conduction. You just hear the sound in a different way.

We have several stories from people with SSD who benefit greatly from the Baha System, such as Tim and Victor, using the Baha Attract and Connect systems respectively. Discuss with your health care professional what option would be best for you.

Another good thing is that you can always try the system before you decide to get it. Your hearing care professional can fit a Baha Sound Processor to a Softband or a testband on your head. This gives a good idea of the benefit.

Good luck!

//The Baha Blog team

Read also: When is Baha System right for me?

‘It’s like putting on your glasses’ – Dan on his Baha 5 Power Sound Processor

wearing-Baha-5-Power

Single-sided deafness (SSD) is a unique challenge. It can be very frustrating to only be able to hear on one side, especially in noisy or crowded situations when you have little control over your environment.

At 13, Baha user Dan lost all the hearing in his right ear. The cause is still unclear, but doctors suspected a virus damaged his cochlea or auditory nerve. They told him there was nothing to be done and sent him home. Dan wore a hearing aid system for about 20 years, with mixed results.

In 2005, Dan’s wife Susan ran across an article about a new hearing solution called a Baha System. Dan went to his health care professional for a trial and spent a week comparing his hearing aids to a Baha sound processor on a headband. He said that trial gave him all the information he needed.

“For me, the Baha [sound processor] with the headband was superior in clarity, volume, and understandability.”

Baha-Power-colours

Now, after over a decade of advancements, he has upgraded to the smaller and more powerful Baha 5 Power Sound Processor and says the sound is better than ever.

“It’s so second nature, it’s like putting on your glasses,” says Dan. “You put it on and it works, you take it off and it stops. It does what I need it to do, and I don’t have to think about it throughout the day.”

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Dan at his daughter’s wedding (wearing his previous Baha 3 Power Sound Processor)

He said the moment that really drove home the importance of his processor was when both of his daughters got married, two years apart. Both times, he was able to do the father/daughter dance and be completely in the moment. Even when his daughters rested their heads on his right shoulder, he was able to hear every word they said.

“That, to me, is totally, completely priceless,” he said. “I can never replicate it or duplicate it. It was a one-time shot, and the processor let me hear what’s most important.”

Read Dan’s entire story here

In the news: Baha Attract surgery helps people hear again

child-baha-attract-magnet

Seven-year-old Paige from Wisconsin, USA, was born with single-sided deafness and no ear canal on her right side.

As an infant she wore a Baha Softband, allowing her to hear and communicate just like other children. Now, at seven, she was finally fitted with a Baha 5 Attract System!

baha-5-behind-ear

”It’s a little more freeing”, Audiologist Sarah Childress of SSM Health said. ”So if they want to take it off and go swimming or do other activities there isn’t a post getting in the way. The other issue is the device itself has been upgraded so the computer chip on the inside is working much better, and it’s able to pair wirelessly with technology, which is giving patients an easier time out in the real world and it actually goes directly to iPhone so they can make some adjustment using an app on their phone.”

A piece of technology that could help many.

“There’s certainly a lot of patients out there that could benefit from this technology that don’t know about it so hopefully we can serve those people,” Dr. Justin McNamar added.

See the video and read the whole story here!

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Skylar lost her hearing in a car accident – now she can hear again with the Baha Attract System

Skylar-Baha-Attract-hearing-loss

A terrible car accident left 17-year old Skylar deaf and blind. Now – two years later, her vision is back on one eye and she can hear again thanks to the Baha Attract System.

“In July 2014, my dad and I were driving to church for youth group. Just as we entered an intersection, a driver in a raised pickup truck ran a red light, T-boning and plowing through our small Volkswagen Beetle […] The result was gruesome: My dad was killed instantly and I was airlifted to the hospital in critical condition.”

When Skylar woke up from her medically induced coma, it was to a traumatic brain injury and broken bones in her head, face, and the upper left side of her body. The left side of her face was completely paralyzed, she had profound hearing loss in both ears and was totally blind in her left eye.

After nine surgeries the doctors managed to save her shattered skull and repair her severed facial nerve. The hearing in her right ear came back unexpectedly after two weeks, but she was still completely deaf on her left side.

“I just kind of accepted the hearing loss and went about my life, trying to heal from all the other injuries. Until I had a follow-up appointment with my audiologist a few months later, when she told me I potentially qualified for a Baha device.

I had heard of Cochlear implants, but never bone-anchored hearing conduction devices. The technology was fascinating to me, and I was so excited that I could possibly regain some sound that we scheduled the Baha Attract surgery that very afternoon, for an operation two weeks later.”

Skylar was one of the Anders Tjellström scholarship winners this year, and is currently working as a summer intern in the US, supporting the Cochlear Recipient Services team. She says that she is glad she took the decision to get a Baha implant and that it has definitely changed her life for the better. She loves the magnet, too.

“The cool thing about the Baha Attract is that once the site healed from surgery, there was no more maintenance required. When I take off my processor there’s no sign that I have anything there, and the magnet isn’t strong enough to cause problems when I walk past lockers or fridges. (That was one of my actual concerns going into the procedure!)”

 

Read Skylar’s whole story here

Parents of young Baha 5 SuperPower user Molly: “The difference in such a short time is amazing!”

Baha-5-Sound-processor-FM-radio-compatible

In March 2016, the Food and Drug Administration (FDA) cleared the Baha 5 SuperPower Sound Processor for use in the United States, and Tufts Medical Center is one of the centers now offering the state-of-the-art technology.

One of the first patients fitted with the Baha 5 SuperPower  is young Molly. Her parents share:

“We just wanted to send you a quick update on Molly and her new hearing aid. She loves it and wears it all day! We have seen a huge difference in Molly since she started wearing the new one last one week. She is more vocal, more attentive, more engaged, and can definitely hear better. She even stopped and looked—while she was watching TV—when she heard a knock on the door. We have never seen her do this before!

Molly also sat on the couch and watched a DVD on TV while sitting next to Kaitlyn {her sister}. The microphone was connected to the TV, and she was very attentive and laughed and swayed when familiar songs came on like “Wheels on the Bus.” She sat next to Kaitlyn for about half an hour, which is something she has never done before for that long, and then they looked at books together. Normally she has to sit in a booster chair on a dining room chair closer to the TV and separate from Kaitlyn and the rest of us.

School has also seen a difference in Molly, as she has been more engaged, more aware, and making lots of vocalizations!! The difference in such a short time is amazing.”

baha-superpower-children

The Baha 5 SuperPower is the first and only behind-the-ear bone conduction sound processor, and users around the world report improved hearing and speech understanding, especially in noisy situations.

baha-5-family

Learn more about the Baha 5 SuperPower

Lexine’s dress

Lexine and model

Lexine Schumm is an aspiring fashion designer and university student – who this year might have created the coolest dress ever!

Lexine was diagnosed with single-sided deafness at the age of four, and has been using a Baha System since she was 12.

Throughout her life, Lexine says she found herself in an odd space between the deaf community and the hearing community:

“In the deaf community, many don’t consider being deaf a disability at all, and they would never change who they are. I am not fully part of either community, which is a large part of why I consider my hearing loss a disability. I chose to get my Baha sound processor, even if I didn’t fully understand it at the time, to continue to bridge the gap between the two communities in my own way. I have a place in both which I think is really powerful. I don’t really wish that I didn’t have single sided deafness. It is a constant challenge and has affected my life in many ways, but it is not only a part of who I am, it has made me who I am. It has shaped my personality and the way I see the world in ways that I am only just becoming aware of. It has taught me to be creative, confident, empathetic, and strong.”

Lexine just finished her sophomore year in the Apparel Design program at the University of Minnesota. This spring her studio class partnered with the Weisman museum on campus to create designs using non-traditional materials inspired by Andy Warhol’s concepts of self portraiture and how objects can shape a person’s self image. For her self portrait, Lexine, who was just upgrading to the Baha 5 Sound Processor, wanted to explore how her hearing loss has shaped her identity and how that could be represented in a physical way.

“I chose to work with copper wire shaped like sound waves and hearing aid batteries. I created a dress that juxtaposed my place in the hearing world with my place in the deaf community, while projecting a sense of power and strength.”

Lexine's dress in the making

Lexine designed a simple shift dress with copper wire, hand shaped to represent sound waves, wrapping around one shoulder and on the opposite hip, with hearing aid batteries creeping out from around the edges of the wire sections onto the rest of the dress. The materials were purposefully abutted but distinctly separate from one another to represent her split presence. While the shape is simple it projects strength and power in the simplicity of the shapes combined with the ornate surface treatment of wire and batteries.

“The dress also reflects the invisibility of my hearing loss”, explains Lexine. “From far away, you cannot tell that it’s made of batteries and it looks like silver beading, but up close and with some context, it can be seen for what it really is.”

To create this dress she had to get her hands on hearing aid batteries – a lot of batteries. Her audiologist at the University of Iowa set her up with her two largest suppliers who donated over 30 pounds (14 kilos) of batteries. Lexine also called local medical supply stores and hearing aid centers in Minneapolis to make sure she would have enough of material.

“After countless hours in materials testing, concept building, and design, I began the construction of the dress, a process that took over 100 hours. I used size 10, 312, and 13 batteries and created texture and depth by playing with the placement of different size batteries next to each other, and using the flat side next to the raised side. Each piece of wire was bent and attached by hand. After the wire pieces were attached, I individually glued each battery to the dress with industrial adhesive. I finished the dress just a few days before the runway show at the Weisman art museum where I was able to see my vision come together in person.”

Lexine's dress

The dress will be on display in the (dis)Abled Beauty exhibit at Kent State University, July 29th 2016 – March 12 2017 https://www.kent.edu/museum/event/disabled-beauty.