Advice from 8 Ponto Parents

Finding the right hearing solution for your child’s individual hearing loss can be difficult. While research is an important aspect of finding the right solution, we also believe there is power in stories and listening to what others have to say about their experience.  Below we’ve brought together advice from eight parents who chose Ponto for their children.

Research, research, research

“I just want to make other people aware that there are other options. Check other resources to make sure you are making an informed decision right away. I quickly learned that no one is going to give me all the information I need.” – Caroline Mannato

“Research those (Facebook and other groups) boards. Don’t allow yourself to be saddled with one device because your audiologist doesn’t want to try something different. Fight for your children’s rights. Make sure you know you have options.” – Jillian Shelton

Social media groups can not only provide community but valuable information

“Look to social media support groups on Facebook, like this one and this one, to help research options and talk to adults and who are wearing the devices you are interested in. – Liz Anderson

“Ultimately, what helped was knowing there are people just like her out there.” – Theresa McCorkell

“The stories that adults and older children were telling were the stories we needed to hear.” – Erin Bullock

Trial other options

“Insist on trialing all options. It’s definitely worth the time it takes.” – Laurie Jarvis

“Try all your options, on your child and yourself, to help you make the most informed decision for your family.” – Heidi Jeffs

“If you have an audiologist who is not open to trying a different company, push or go elsewhere – just do your research.” – Liz Anderson

“Advocate, because our children need us.” – Shannon Gordon

Interested in learning more about these Ponto families? Click below to read more in-depth into their individual hearing journey in our new Patient eBook.

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Advocating for a better solution – Dominic’s journey to the Ponto 3 SuperPower

When Caroline Mannato’s son, Dominic, was born with unilateral microtia and atresia she worked with her audiologist to quickly have him aided with a bone anchored hearing system (BAHS). At six months old, he received his first BAHS, however, acoustical feedback was a constant issue.

“He has curly hair and the curls kept hitting the device and just from his hair, it would create feedback. It was constantly buzzing. I realized within the first few weeks this was not acceptable.” – Caroline Mannato

Caroline enrolled her son in an early intervention program to do monthly speech evaluations and through this program, she was able to connect with another mother whose daughter also had microtia and atresia.

“I invited her over for coffee and she brought her daughter’s Ponto device. I mentioned my feedback issues and she said they hadn’t experienced any. We compared my device to hers and I asked her ‘how do you turn it on’. She said it was on – it wasn’t vibrating or making any noise. I had mixed emotions thinking ‘why don’t I have this for my child’.” – Caroline Mannato

The Mannato family began researching and going to hearing events around the country trying to educate themselves on all available options. From Ear Community picnics to the Earicles Microtia Atresia Conference in California, and Vanderbilt Microtia and Atresia Clinic in Tennessee, Caroline specifically sought out adults who were BAHS users to speak to. She found that many adults had started with other BAHS’s and eventually switched to the Oticon Medical Ponto. It was these patient interactions and stories that confirmed for Caroline that Dominic needed the Ponto Bone Anchored Hearing System.

Dominic received the Ponto 3 SuperPower and was the first person programmed with a Ponto device at UNC-Chapel Hill. The results since then have been night and day.

“When we take it off, he points at it and he wants it. Then you put it on him and he smiles. Leaving the house is less of a hassle too now. I don’t have to take it off and put it back on him to prevent feedback. When it’s on, it’s on.” – Caroline Mannato

To other parents who are also on the journey of finding the best hearing option for their child, Caroline’s advice is research, because you have options.

 

If you’d like to learn more about the latest Ponto device – Ponto 3 SuperPower – click below to be connected with an audiologist. 

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From fearful to fearless – how advocacy helped Cierra McCorkell receive her abutment surgery

Cierra McCorkell was born with bilateral hearing loss with microtia and atresia on the left side.

She received her first Ponto Bone Anchored Hearing device in 2012 when she was in 6th grade after her hearing loss had progressed. She began wearing a Ponto Pro on a headband and continued with the headband until she was in high school. When discussing the possibility of surgery, she found the decision overwhelming, and surgery was a frightening thought.

“Just the word alone made her afraid. I have always let her choose for herself when she is ready to do something so this decision was solely on her.” – Theresa McCorkell

While researching bone anchored hearing, Cierra’s mother Theresa found the blog of a Ponto advocate who had written about her recent surgery to have her abutment placed. Theresa commented that her daughter was afraid of the surgery which sparked an online conversation that would lead Theresa and Cierra to Oticon Medical’s annual patient advocacy conference to learn more about the procedure.

Overcoming a fear of surgery
In October of 2016, Cierra and her mother attended the Oticon Medical Patient Advocacy Workshop. It was there, among fellow Ponto users, that Cierra expressed her fear of surgery and where she learned first hand about the Minimally Invasive Ponto Surgery (MIPS) procedure.

“She had never met anyone like her. But now she saw other children and adults who were doing great with the surgery and that helped her a lot. Cierra was nervous because she doesn’t talk about her hearing loss and we didn’t know what to expect. We had a great time and we learned a lot. She made friends and it opened up a whole new conversation for her to learn how to advocate for herself now that she is getting older.” – Theresa McCorkell

On the last day of the conference, Cierra announced that she had made the decision to move forward with abutment surgery thanks to the stories and information provided by fellow advocates.

Surgery and activation
On September 1, 2017, Cierra was implanted using the MIPS procedure. Her mother comments that the surgery was less than an hour and without complications. Four months after her abutment was placed, Cierra was finally able to snap on her Ponto Pro, which her mother captured in the video below.

 

“Ultimately, what helped was knowing there are people just like her out there.” – Theresa McCorkell

If you’d like to learn more about the latest Ponto device – Ponto 3 SuperPower, click below to be connected with an audiologist.

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Powerful sound: How the Ponto 3 SuperPower is making a difference for these Ponto families

This past October, we sat down with parents of children who use the Ponto bone anchored hearing system and asked them about three important aspects of the bone anchored hearing experience – the power of choice, discovering the difference, and powerful sound.

Powerful sound

The Ponto 3 SuperPower gives premium sound quality, as well as helps reduce the effort spent on listening. Loud sounds remain loud but not distorted, and softer sounds are audible.

When there are conversations and background noise, your brain has to work harder to make sense of the sounds it hears, which can leave you or your child feeling drained.The Ponto 3 SuperPower helps reduce the extra listening effort the brain expends to compensate for a hearing loss, freeing up mental energy for more important things in life.

In the video below, these families share their experiences with the Ponto 3 SuperPower and how the sound quality has made a difference in their children’s lives.

 

Interested in learning more about the Ponto 3 SuperPower as a possible hearing solution for your child? Click below to be connected to an audiologist.

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Discover the difference: The importance of trying different bone anchored hearing devices and why these families chose Ponto

This past October, we sat down with parents of children who use the Ponto Bone Anchored Hearing System and asked them about three important aspects of the bone anchored hearing experience – the power of choice, discovering the difference, and powerful sound.

Try and discover the difference 

In the video below learn how important it is to demo different devices and how these parents discovered the difference with Ponto by doing so.

 

Interested in the Ponto 3 SuperPower as a possible hearing solution for your child? Click below to learn more.

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Powerful choice: Why these parents chose the Ponto 3 SuperPower for their children

This past October, we sat down with parents of children who use the Ponto Bone Anchored Hearing System and asked them about three important aspects of the bone anchored hearing experience – the power of choice, discovering the difference, and powerful sound.

Choice – you have options

There are options when it comes to bone anchored hearing, and these families have learned about their choices through online support groups such as this one and this one, research and advocacy. 

In the videos below, two families share their experiences of looking for the right hearing solution and choosing Ponto. We hope their stories empower you to find the solution that’s right for your child.

Interested in the Ponto 3 SuperPower as a possible hearing solution for your child? Click below to learn more.

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The Ponto 3 SuperPower is a hopeful solution to hearing loss for James Wolff

James Wolff is 71-years-old and has experienced hearing loss for years. In the past, he wore bilateral hearing aids, however, because of drainage in his left ear, he often had to remove the hearing aid which left him with poor hearing on his left side. His daughter, Kimberlee Griffey who has worked at Oticon Medical for 7 years, recounts bringing her bone anchored hearing equipment to Christmas every year for her father to try.

“I’d bring a demo, a softband, and a Streamer to Christmas,  just wanting to test him, but he would say he didn’t need it. Then last Christmas he finally said ‘I think I’m ready for the procedure’.” – Kimberlee Griffey

James had surgery to get his abutment placed in June 2017 with Dr. James Benecke at Missouri Baptist Hospital in St. Louis, Missouri. Dr. Benecke has been working with bone anchored hearing systems (BAHS) for 14 years. He says that for many patients with conductive or mixed hearing loss who cannot have their hearing corrected surgically and cannot use hearing aids because of ear canal and drainage issues, a BAHS is a great option.

When considering a BAHS for his patients, Dr. Benecke investigates and explains all available options. He recommends that his patients talk with other patients who wear different devices, checks insurance options and has patients trial the BAHS on a softband. If an audiometric evaluation is unclear as to whether a person might be a good candidate for the Ponto, he works with Oticon Medical representatives to help with identifying potential candidates when an evaluation might be unclear.

“I always give patients their options and have them chat with people who have tried different systems. Overall, my patient population does better with bone anchored hearing systems as opposed to a CROS hearing aid.” – Dr. Benecke

For James’s procedure, Dr. Benecke performed the Minimally Invasive Ponto Surgery (MIPS). MIPS is a procedure that takes 10-15 minutes and is normally carried out under local anesthetic. He mentions that when someone says the word surgery, most patients have pre-conceived thoughts about what is involved.

“No one wants to have surgery, but if there is an opportunity to improve an aspect of someone’s health by doing a procedure that someone is well informed about and has good outcomes, then people need to know about it so they can make the best-informed decision.” – Dr. Benecke

“When people first think of surgery they think long recovery time—a long time in the operating room. I tell people that with the MIPS procedure it’s less than an hour, outpatient procedure. My dad had no pain whatsoever. It was life-changing for him. My advice is not to wait because you don’t know what you’re missing.” – Kimberlee Griffey

This past September, James was activated with his Ponto 3 SuperPower and the results have been life-changing.

“Before he described sounds as muffled.  Now it is loud and clear.  His volume of speech has significantly decreased because now he can monitor his own speech, where he was not able to do this before. He drives a lot and he’s able to put the microphone on his grandkids and he can hear them in the back seat. He also loves using his Streamer to connect to his phone, TV, and laptop. It has opened a whole new world and I am so very grateful that he is able to get the best of life in his golden years.” – Kimberlee Griffey

As awareness continues to grow around bone anchored hearing and the MIPS procedure, Dr. Benecke says he will continue to advocate for bone anchored hearing because ‘the results speak for themselves’.

“The first thing my dad said after he was fit with his Ponto was ‘why didn’t you tell me about this earlier?’” – Kimberlee Griffey

 

Interested in learning more about the Ponto 3 SuperPower? Click below and we can help connect with you with an audiologist in your area.
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Nathan’s journey to his Ponto 3 SuperPower

Nathan Anderson is 7-years-old. He was born with Treacher Collins syndrome and bilateral conductive hearing loss. His hearing journey began when he was 6 months old with a bone anchored hearing system (BAHS) on a softband.

While his mother, Liz Anderson, was happy her son had the device, they were never happy with the feedback that occurred when someone or something would come in contact with it. Through online communities such as the “BAHA Kids Club World Hearing”, Liz began to learn about other bone anchored hearing options and came across Oticon Medical and the Ponto.

When it came time to decide whether or not he would continue with his device on a softband, Nathan who prior to his BAHS surgeries had had 7 other medical procedures, was unsure about the decision. He spoke with a friend who had gone from a softband to an abutment and received reassurance that the surgery was an easy process.

“When it came time for deciding on whether or not to have surgery for implantation, Nathan made the decision himself. One day at the dinner table, he let us know he was ready.”

In the video below, Nathan’s Ponto 3 SuperPowers are activated!

 

“When I saw videos of adults trying the new Ponto 3 SuperPower, it helped me make the decision that that was the direction we wanted to go. The clarity that people spoke of and children in middle school spoke about trying different BAHS devices but ultimately chose Ponto – that cemented our decision.”

Interested in learning more about our newest Ponto – the Ponto 3 SuperPower? Click the button below to be connected to a representative from our team.
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A Wonderful way to bring awareness to microtia and atresia and a lesson in “choosing kind”

“The doctors and nurses told us that Davin didn’t have ears. That he was going to be a deaf-mute and would never talk or hear. I didn’t believe them and the next day my mom came to the hospital with a yellow piece of paper with writing on it – microtia and atresia” – Shannon Gordon

“I remember the day when my youngest daughter Alyssa (Ally) was born. It was one of the happiest moments in my life. My husband, Brent, and I were so thrilled to finally meet her. I remember her little smile and how beautiful she was, but I also remember Brent coming over to me with tears welled up in his eyes when he said ‘Something is wrong with her ear.’ Ally’s right ear was only partially formed, with no obvious ear canal.” – Melissa Tumblin, Founder of Ear Community

Melissa Tumblin with her daughter, Ally, at the prescreening of the movie Wonder

This is not just Shannon and Melissa’s story. It’s the story that many families with microtia and atresia have faced.

Today, we’re happy to see awareness being spread from the recent movie “Wonder”, which documents the journey of Auggie Pullman, a boy born with Treacher Collins Syndrome, who has microtia and atresia. Although Auggie’s story might be fictional, the lives of approximately 600,000 individuals who have been diagnosed with a craniofacial condition in the U.S. and 34,000 people living with microtia are real. As awareness is cultivated by movies like “Wonder”, so is kindness, responsibility, and friendship. Ultimately, we hope this movie and others like it will continue to inspire the world to ‘choose kind’.

“This movie is bringing a lot of awareness to some of our very rare differences.” – Rachel Plassmeyer

 

The Ponto 3 Power Makes a Powerful Difference in Nicaragua

Nicaragua is the largest country in Central America with a population of over 6 million people. According to the Carlyle Hearing Center, it is estimated that 10% of the Nicaraguan population has a severe to profound hearing loss, pointing to a count of 600,000 people.

Sherry Rauh is a former medical journalist. After becoming intrigued by implantable hearing technology, she went back to school and to earn her AuD from Nova Southeastern University in 2015. She is now a clinical audiologist with South Florida ENT Associates and the co-founder of Hear for Good, Inc., a nonprofit foundation dedicated to helping adults and children with hearing loss in South Florida and Nicaragua.

Hearing Aids for Nicaraguan Students (HANS)

Kamilla, age 7

In 2014, Dr. Rauh organized a joint project between Nova Southeastern University’s (NSU) Student Academy of Audiology and the Los Pipitos Institute in Managua, Nicaragua to provide hearing aids to children.

“I had been to Nicaragua the previous year and saw how they were identifying many children with hearing loss at a young age, but had limited resources for intervention.”

In 2015, the HANS Project received a grant from the Hear the World Foundation providing BTE hearing aids for the next 5 years. Dr. Rauh now travels to Nicaragua every year with a small group of audiology students from NSU, to fit new hearing aid devices and provide followup to previous patients, while Los Pipitos provides check-ups and speech therapy.

“It’s really important to me that whichever children we do fit with hearing aids we are able to provide them with sufficient follow-up care.”

Providing Bone Conduction Hearing Devices in Nicaragua

Anselyn, age 1

As Dr. Rauh’s organization has grown, her partners in Nicaragua began asking what could be done for children with microtia and atresia, who cannot use conventional hearing aids for their hearing loss. She reached out to Oticon Medical and her local representative, Brittany Whitlock, who provided two demo units which were fit with soft-bands. Oticon Medical then made an official donation of four Ponto 3 Power units for her trip her most recent trip this October.

“While we have the BTE hearing aids, there are children who can’t use those and to be able to extend assistance to those children meant a lot to our team, the team in Nicaragua, and the families.”

Frander, age 7 months

 

With the continued work of the Hear for Good foundation and Los Pipitos, children in Nicaragua with different hearing needs are not only being fit with hearing devices, but receiving the proper follow-up, and care throughout their lives. When asked why this work is important to her, Dr. Rauh said, “There are so many countries where there is very little, to no access to audiologists, so part of me feels like we have a responsibility to provide that assistance. But I also get a lot of personal joy making these trips and seeing the difference we are making.”