Monthly Archives: February 2018

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

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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.

 

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

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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

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Click the button if you want to learn more about our Ponto bone anchored hearing systems or arrange a trial.