Guest blog: How the Baha System helped one mom take early action to treat her infant daughter’s hearing loss

Guest blog: How the Baha System helped one mom take early action to treat her infant daughter’s hearing loss

Hearing loss can be challenging for a newborn trying to reach developmental milestones, but mom Ashton M. decided to treat her daughter’s hearing loss, due to microtia and atresia, right away. Hazel, who just turned one year old, wears her Baha 5 Sound Processor as she begins to grow up like any other baby.

 Ashton wrote to the Baha Blog to share Hazel’s story, and to provide a few tips for other parents who are considering treating their children’s hearing loss with bone conduction and the Baha System.


At one month old, Hazel has an Auditory Brainstem Response (ABR) test performed to measure her hearing.

On June 6th, 2017 at 2:00 in the morning, we were truly blessed with a perfect little girl who we named Hazel. Her dad Mike and I were over the moon to finally see her after nine long months.

With all the excitement of the delivery, there were a lot moments that seemed like a blur to me. After they weighed and measured her I finally got to hold her in my arms. I was just overcome with happiness.

In that moment I will never forget when Mike asked me if I had looked at Hazel’s left ear. I immediately lifted the cap that newborns wear and began to examine her. The nurse in me started to run down a list of possible diagnoses in my head, and then the worried mother began to set in as well. I didn’t see an opening in her ear canal, and I noticed her ear was not fully formed. Those first few days of Hazel’s life were both exciting and scary for Mike and me.

We learned that Hazel was born with a congenital condition called microtia with atresia, affecting her left ear. Microtia means she has a small outer ear, and atresia means she has no external ear canal. We were then told she was not able to hear out of her affected ear, but she tested perfect with her right ear during a screening.

Hazel is fitted with her first Baha 5 Sound Processor at 6 months old.

The day we walked out of the hospital to take Hazel home, I could hear the birds chirping and all the noise around me – and it had never seemed so loud. I covered my left ear and tried to put myself in my brand new daughter’s shoes and I began to cry. I wondered and asked myself if she will ever hear like I do.

Then came many appointments with an ENT (Ear, Nose and Throat clinician) and an audiologist. The moment we met our audiologist was the first time that I felt, “Hey, Hazel is going to be just fine!” Our audiologist performed another hearing test on both of Hazel’s ears called an Auditory Brainstem Response (ABR). Hazel’s right ear showed normal hearing sensitivity and her left ear showed moderate to severe conductive hearing loss. Our audiologist began to tell us our options from that point and educated us on a bone conduction hearing device that will allow Hazel to experience bilateral hearing.

We gave the OK to start the process of getting her fitted for her Cochlear Baha 5 Sound Processor, a bone conduction hearing device. Then the day finally came! When she was about 6 months old, she received her sound processor, which she wears on a Baha Softband headband.

She was a little overwhelmed and frightened, hearing for the first time out of her microtia ear. Until then all she ever knew was being able to hear from one side, so it took a few days for her to get used to the change. It has been a challenge adapting to the milestones of growing up as she wears her Baha sound processor, but we could not be more thankful for the brilliant minds behind the development of this device.

Hazel wears her Baha 5 Sound Processor on a Softband, adorned with a small bow.

As an infant wearing a Baha sound processor, Hazel faces a few challenges that we have to navigate, and throughout this process we’ve found some useful tips for parents like us. Here are a few tips for parents of infants wearing a Baha device:

  • Rolling on the floor sometimes leads to feedback issues. When Hazel is on her back or when she wants to roll around, we rotate the Softband so that the sound processor is on her forehead, preventing feedback.
  • Since she was very young we have put headbands on her, which has helped her get used to wearing something on her head. This has definitely been useful as she adjusts to wearing the Softband for extended periods of time.
  • Gaining more self-awareness means she wants to play with her clothes, or even pull the Softband off whenever she gets a chance. Once we put the Baha 5 Sound Processor on her, we immediately do something to distract her. When it’s out of sight, out of mind, she gets better at wearing her processor for longer periods.
  • When she is not wearing her sound processor, we also use a glasses case to store the processor while it is attached to the Softband. The white storage box that comes with the Baha 5 Sound Processor is the best solution for storing the processor on its own, but the glasses case allows more room for both the sound processor and the Softband while they are attached. As an added bonus, Hazel’s hands aren’t yet strong enough to open the case on her own.
  • So that you can easily open the Baha 5 Sound Processor’s tamper-proof battery door, designed to prevent children like Hazel from accidentally removing the battery on her own, we recommend you also store the tamper-proof tool provided in the sound processor box, or a small hairpin, together in your storage case.
  • It is also a good idea to remove the battery and store your child’s sound processor overnight in Cochlear’s Dry Aid Kit or a drying box like The Breeze by Dry & Store. Infants are messy, and doing this helps to keep moisture out of the sound processor.
  • For more tips on living with the Baha System, click here.

We are so proud of our little Hazey and so excited to see what the future brings for her! As a family, we are excited to learn about these medical advances and be on this amazing journey with the Cochlear family.

I know now that she hears every little birdie tweet, and every outside noise there is!

The opinions expressed in this blog are my own views and not those of Cochlear.


Click here to learn more about treating hearing loss in children.


Want to share your story, hearing tips or Baha advice with The Baha Blog? Let us know! Find us on Twitter at @TheBahaBlog, on Facebook at our page The Baha Blog or via email at bahablog@cochlear.com.

Teacher Irene M. hears children more clearly in the classroom since upgrading to Baha 5 Power

Teacher Irene M. hears children more clearly in the classroom since upgrading to Baha 5 Power

Irene was diagnosed with hearing loss after a viral infection in 2010. After five years with the Baha Intenso sound processor, she upgraded to the Baha 5 Power and is thrilled she did.

Irene was diagnosed with hearing loss after a viral infection in 2010. After five years with the Baha Intenso sound processor, she upgraded to the Baha 5 Power and is thrilled she did.

Irene works teaching children, which can be a challenging task with a hearing loss. For anyone, trying to get children to speak slowly and clearly — and to be patient with the listener — can be tough. But now that Irene has upgraded to the Baha 5 Power sound processor, she said she can hear the children at her primary school more clearly.

Irene, 31, was diagnosed with hearing loss after a viral infection in 2010. After she got her implant surgery, she was fitted first with the Baha Intenso sound processor. Five years later, she upgraded to the Baha 5 Power and is thrilled she did.

Watch this video to see more of Irene’s story about why she chose to upgrade:

 


Want to share your story, hearing tips or Baha advice with The Baha Blog? Let us know! Find us on Twitter at @TheBahaBlog, on Facebook at our page The Baha Blog or via email at bahablog@cochlear.com.

‘A whole world opened up to him’: Celebrating a new life of sounds this Autism Awareness Month

Parents of children with autism can have unique challenges in diagnosing and treating their children’s hearing loss. For Autism Awareness Month, blogger Jen B. from Oregon, U.S. has written about her 3-year-old son Xander’s hearing journey, from difficult diagnoses to helping him learn to wear his new sound processor.

You can follow Jen’s blog here on WordPress or here on Facebook.

 


“Xander!” “Xander!” “Xander!?”

But no response did I ever get from my son.

Xander, now 3, plays at school.

Xander, now 3, plays at school.

He will turn on a dime if he hears his favourite theme song start up. He’ll sing along in perfect pitch. And yet, dogs barking right next to him never make him flinch.

My son was born three weeks early with a collapsed lung and rapidly dropping sugars. Very soon he was transferred to a hospital with a Neonatal Intensive Care Unit (NICU). When I first saw him it was obvious that there was a slight deformity of his right ear. I assumed he had lain on it wrong in utero, and that it would work itself out.

The hospital gave Xander a hearing screening, as was standard procedure for all NICU babies. The nurse came in while he was asleep on me and checked his left ear first, because that’s always, even now, the ear he has to have facing out while snuggling.

Everything was fine.

The nurse tried twice to check his right ear and still seemed perplexed, because she couldn’t get the readings she was used to. Ultimately, she marked it as a pass.

It was only later we learned Xander’s hearing wasn’t normal.


My son has Autism Spectrum Disorder. He was diagnosed at only 18 months old. He is now 3 years old and considered non-verbal. He speaks, but not necessarily with what professionals would call, “purpose.”

Autism affects all forms of communication. Where a neurotypical child with a hearing loss might pull at their ear, say they can’t hear, or make some sort of gesture – something — we got nothing. It gradually became clear he needed to have his hearing assessed.

At about 2 years old Xander finally saw an audiologist. Autism can make a child both seek out stimulations (sensory seeking) and feel overwhelmed by them (sensory overload), so diagnosing hearing loss can be a challenge. In a room with all sorts of things making noise and lighting up, Xander wasn’t very cooperative. His tubes were clear, but the audiologist scheduled him for a sedated Auditory Brainstem Response (ABR) hearing screening. All the worst-case scenarios came into my mind during the scan, which felt agonisingly long.

Jen poses with 3-year-old Xander, wearing his Baha 5 Sound Processor on a Softband.

Jen poses with 3-year-old Xander, wearing his Baha 5 Sound Processor on a Softband.

The doctors learned Xander had conductive hearing loss in his right ear, and to learn more he would need a CT scan of his temporal bone. The doctors decided further diagnosis was not urgent and told me things like, “just speak to him on the left side” and, “in cars he probably won’t be able to hear you.”

About six months later Xander need an MRI for another issue, so we decided to have the CT scan done at the same time while he was sedated. We learned he is missing the third stapes, or stirrup – one of the bones of the ear – on his right side, a rare condition.

There is a surgery to implant a prosthetic stapes, but Xander’s major facial nerve runs where the bone should be, making the operation too risky. We decided instead to treat Xander’s hearing loss through bone conduction.


The sensory sensitivity caused by Xander’s autism made it hard for him to wear his first sound processor. The constant vibration against his head, the increase in noise and the strap around his head were difficult for him to tolerate. I would try bribing him, like I do with his glasses. “If you put it on, you can have a candy.” It didn’t help much.

When Xander’s trial was over, he received his Cochlear Baha 5 Sound Processor, and we both loved the way it looked. When I pointed out how cool he looked wearing it on his Softband, he beamed with pride and wore it for several days, for long stretches at a time – even to school!

Believe me when I tell you that I cried when I said, “Xander!” and he looked up at me.

He was able to hear the start of his favourite show in the whole world. He was mesmerized. He had never noticed all the nuances of it before he got his Baha processor. He could understand enunciations. He could hear his electronic toys, the ones that had never interested him before. A whole world opened up to him.

But for a child with autism, that can be really intimidating.

After an accident left him injured, Xander has become even more sensitive to stimulation, and sometimes getting him to wear his sound processor is nearly impossible.

Well, every day is a different day in the world of autism. While trying to take a photo of him wearing his sound processor, I was able to capture a whole video. He let it stay on while cruising around a department store today. I was so excited, and I hope tomorrow he’ll leave it on even longer.

For children with autism like Xander, treating hearing loss might not be a linear journey, but each day brings new opportunities for him to listen to his teacher at school, his toys, and even respond when I call him, “Xander.”

The opinions expressed in this blog are my own views and not those of Cochlear.


If your child is showing signs of hearing loss, use this tool to find a clinic near you.


Want to share your story, hearing tips or Baha advice with The Baha Blog? Let us know! Find us on Twitter at @TheBahaBlog, on Facebook at our page The Baha Blog or via email at bahablog@cochlear.com.

When losing something leads to something ‘wonderful’: Dwight’s experience upgrading to the Baha 5 Sound Processor

When losing something leads to something ‘wonderful’: Dwight’s experience upgrading to the Baha 5 Sound Processor

This blog was adapted from its original article on Hear and Now, a Cochlear Americas recipient blog. Read it here.


Dwight J. of Colorado streams a phone call directly into his Baha 5 Sound Processor.

Dwight J. of Colorado streams a phone call directly into his Baha 5 Sound Processor.

Sometimes losing something important to you turns out to be surprisingly “wonderful.” Just take it from Dwight J. in Colorado, U.S.

After a day of hiking, Dwight noticed he could not hear as well as he was used to. He reached up and discovered his BP100 Sound Processor was gone. He looked everywhere for it, but he realised he must have lost it while out on the hike.

Dwight acted quickly and called Cochlear to get a replacement. To his surprise, the representative told him Cochlear no longer offered the BP100. They introduced Dwight to the Baha 5 Sound Processor, and he knew he wanted an upgrade.

“It’s wonderful,” Dwight said after upgrading.

He said he especially likes being able to connect to his sound processor with Bluetooth, stream phone calls and stream radio directly to his sound processor while out on a walk.

Dwight also said he carries his Cochlear Wireless Mini Microphone with him wherever he goes. “I put it on whoever I’m talking to, if I’m in a loud situation, so that I’m able to hear them,” he said.

When it comes to continuing his journey as a part of the Baha family, Dwight seems thrilled.

“Cochlear culture oozes with a four-letter word: care,” he said. “They care about people.”

Dwight is a member of his local chapter of Cochlear Community, a Cochlear Americas program that connects Cochlear recipients in the U.S.


Want to share your story, hearing tips or Baha advice with The Baha Blog? Let us know! Find us on Twitter at @TheBahaBlog, on Facebook at our page The Baha Blog or via email at bahablog@cochlear.com.

 

World Down Syndrome Day and hearing loss: Celebrating children like Chloe

The following is a re-post of a guest blog from 2014 about Chloe, who was born with Down syndrome and lived with hearing loss until she was implanted with the Baha System at 10 years old in 2010. Chloe was 14 when her mother Jane wrote this guest blog to share with us the affect Chloe’s Baha implant had on her life. Join us in marking World Down Syndrome Day today (21 March) and celebrating children like Chloe.


It’s been a while since you last heard about Chloe. She is now 14, in year nine at senior school and even more of a little madam than when we last met four years ago.

Unfortunately Chloe’s health hasn’t been very good the past two years. She has had some major operations which have left her bed bound for weeks, and in and out of hospitals. Chloe has shown incredible strength and determination, both because that’s the type of girl she is and because she was able to communicate effectively with hospital staff and myself.

This is all thanks to her Baha sound processor. Chloe’s language skills and attention skills have flourished over the last four years; her vocabulary has grown, she is learning new words each day and she is definitely more attentive to those talking to her (apart from when she chooses not to!). This meant the hospital staff was able talk her through what was going to happen and she could indicate her pain levels and talk to the doctors.

I dread to think how she would have coped six or seven years ago, when her hearing levels were so low, and she hardly had any language. The world would have been a very lonely and scary place for her.

Chloe still loves drama and attends a very good secondary school that specialises in drama so she can devote more time to her passion. She is still my drama queen and a budding actress, dancer and musician. Obviously she is becoming a young lady and her life is changing. Developing language and communication skills has played a big part in this and will continue to do so.

My one aim for my daughter has been to become as independent as her disability would allow her. The Baha [System] has contributed to the success of this aim. She can order her food in restaurants. She can shop at the supermarket. She is also very good at being a typical teenage and slamming doors on me!

So am I pleased with the Baha [System]? Yes, my only regret is that I didn’t push for it sooner. I would recommend it for any parent or young person who needs it. Read the literature, speak to the professionals and if you feel it right go for it! It opens many doors and not once have we looked back.”

Jane lives in Birmingham, UK. In 2013 she won the Birmingham Parent of the Year Award for her tireless work with a special needs support group, as well as caring for her own two children who both have special needs.


Want to share your story, hearing tips or Baha advice with The Baha Blog? Let us know! Find us on Twitter at @TheBahaBlog, on Facebook at our page The Baha Blog or via email at bahablog@cochlear.com.

‘Lighting a candle in the dark’: Dennis reflects on his hearing journey with the Baha family

‘Lighting a candle in the dark’: Dennis reflects on his hearing journey with the Baha family

This blog was adapted from its original article on Hear and Now, a Cochlear Americas recipient blog. Read it here.


Sometimes life takes an unexpected turn and we find our “status quo” has been uprooted. When things are not going according to plan, it can be easy to feel lost.

But that does not mean it is the end. In fact, it may be a new beginning.

Meet Dennis, a Baha® 5 SuperPower recipient. He had normal hearing until 2012, when he went to the doctor because he suspected he had swimmer’s ear or inflammation.

Instead, Dennis was diagnosed with an acoustic neuroma— a rare, non-cancerous tumor that presses on the eighth cranial nerve leading from the brain to the inner ear. Common symptoms include hearing loss, tinnitus and vertigo.

Doctors estimated that his tumor had been growing for about 20 years.

“As the tumor grows, it takes up space, and by the time we found it, my hearing was down to 30 percent in the right ear—nothing usable,” Dennis said. “I could hear pings and single tones, (but) I could not understand what people were saying.”

Doctors told him his treatment options were surgery or radiation. Dennis opted for surgery in April 2013 to make sure the tumor was completely removed.

Six months later, at a post-surgery follow-up with his ENT, Dennis first learned about the Baha System. That was when everything changed.

“As a test, he put a Baha [sound processor] on my head, on a metal band,” Dennis recalled. “He stood behind me five feet or so and whispered words. When I realized it was picking up the sounds I was missing, I realised I’d like to have something to ‘harvest the sound’ from the deaf side.”

He had abutment surgery in December 2013, and by February 2014 Dennis was fitted with the BP110 processor. He said it helped him to become more aware of his surroundings.

“People couldn’t sneak up beside me on my right side, and I was aware somebody was there. That was basically why I did it,” Dennis said.

In March 2017, he upgraded to the Baha 5 SuperPower. Dennis said one of his favorite features is the rechargeable batteries.

“When I wore the BP110, I was replacing the battery every ten days,” he said. “The SuperPower takes rechargeable batteries, so it actually works out better because I can get a day and a half out of a rechargeable battery. With the cost of disposable batteries, it’ll pay itself off after a while.”

Reflecting on his journey and his advice for others, Dennis compared hearing loss to navigating in the dark. It’s a lot easier when you have a light.

“Light a candle, don’t blame the darkness,” he said. “What do you have to lose?”

For more information on the Baha 5 SuperPower, click here. To find a hearing specialist near you, click here.


Want to share your story, hearing tips or Baha advice with The Baha Blog? Let us know! Find us on Twitter at @TheBahaBlog, on Facebook at our page The Baha Blog or via email at bahablog@cochlear.com.

In the News: Congratulations to 2018 Anders Tjellström, Graeme Clark scholarship winners

Eight students were awarded the 2018 Graeme Clark and Anders Tjellström scholarships.

Last week, Cochlear Limted announced the winners of the 2018 Anders Tjellström and Graeme Clark scholarships. Congratulations to the winners!

The three 2018 Anders Tjellström Scholarship winners are:

  • Monica Pasqualino (Johns Hopkins Bloomberg School of Public Health) from Oceanside, New York
  • Elise Schiller (Trinity College) from St. Louis, Missouri
  • Carol Rynar (Canisius College) from Buffalo, New York

“Just as my Baha System opened a new world for me, I have become inspired to help others confidently navigate their life without anxiety, and to work to minimise the barriers that prevent them from engaging fully with their world because of hearing loss,” said Rynar, a Baha System recipient and an Anders Tjellström Scholarship winner. “This scholarship will help me extend this miracle of sound from me to the students I serve as a teacher.”

The five 2018 Graeme Clark Scholarships winners are:

  • Elaine Wright (Princeton University) from Tucson, Arizona
  • Tania Karas (Oxford University) from Palos Park, Illinois
  • Keenan Murphy (Manhattan College) from Bronx, New York
  • Hunter Orthmann (University of Iowa) from Iowa City, Iowa
  • Natalia Adriance (Notre Dame) from Napa, California

About the Scholarships
The scholarships, named after two pioneers of the hearing implant industry, recognize Cochlear™ Nucleus® Implant and Baha® System recipients in the United States and Canada who uphold the Cochlear ideals of leadership and humanity, and demonstrate high academic achievement. The Anders Tjellström Scholarship is named after Anders Tjellström, the research physician in the department of otolaryngology at the Sahlgrenska University Hospital in Sweden who collaborated with Per-Ingvar Brånemark, a pioneer in his field, to treat the first patient with a Baha device. The Graeme Clark Scholarship is named after Professor Graeme Clark, the inventor and pioneer of the multichannel cochlear implant.

Read more about the scholarships and apply here.

Read more about the 2018 winners here.