Being a teenager is a fun, but it can be hard work too. Andrew Perry, a 14-year-old born with Treacher Collins and Bilateral Microtia and Atresia, has conductive hearing loss in both ears making participation, working in groups of students and hearing class lectures even more draining than it can already be.
“Straining to hear can make someone with a hearing loss tired throughout the day,” says Melissa Tumblin, Founder of Ear Community. The background noise common in rooms full of students made concentration difficult for Andrew. Clyde, Andrew’s father, said that Andrew’s academic performance had declined significantly, and he believed it was because of the difficulty of hearing and following instructions in the classroom.
Here’s how an Audiologist went the extra mile for Andrew, as first told on Ear Community.
In the middle of winter, it’s always fun to look ahead to the summer. Summer time also means it’s time for Ear Community’s Microtia and Atresia Summer Family Picnics. The picnics provide an incredible opportunity for Microtia and Atresia families to come together, share experiences and make new friends. Medical professionals also join in the fun and are available to answer questions and help to educate families on options for hearing loss. Families will even be able to test out the newest state-of-the-art hearing products.
Today, we would like to share a special story. After years of confusion and frustration, Camilla was able to connect with peers and mentors–including our friend Justin Bays–who helped lead her to the hearing device that’s right for her– all thanks to the incredible efforts of Ear Community.
Camilla was Ear Community’s very first college scholarship recipient. Camilla is now working on her graduate degree, and she’s a wonderful single mom too! Camilla’s family are long-time supporters of Ear Community. Camilla is also a member of the Hearing Loss Association of America (HLAA).
Meet Vishal, a 10-year-old musician with Microtia and Atresia. We first met Vishal when he posted this message on the Oticon Medical Facebook Page:
10 years old – born with Microtia and Aural Atresia.
Student of grade 5.
I grow up in Germany because my Dad has his office out here.
He loves music.
At first he is shocked because his son is born with Microtia.
Then he remembers his conversation with God before I was born.
God was looking for parents for me like the ones I have.
My Dad promised God to be the best Dad ever.
The German Doc told my Dad just after my birth that I would not be able to hear nor speak.
My dad trusts in God and in His ways.
I get a Softband Oticon.
I win a first prize in a music competition in Germany!
Here’s Vishal to share a bit of his musical journey.
A few months ago, we first introduced you to Shannon and her daughter Ava. Shannon took the time to tell us about her journey in finding out that Ava had hearing loss and what came after. Today, we’re excited to share another milestone in Shannon and Ava’s lives, as told by Melissa Tumblin, Founder of Ear Community.
Meet Ava Katuszonek, an adorable little three year old girl who was born with Microtia and Atresia of her right ear. Ava is a very happy little girl who enjoys playing with friends and is excited to learn the alphabet and begin reading. However, when Ava was about one year old, her mom, Shannon, began noticing her struggling with her hearing. Ava wasn’t always responding to Shannon’s voice when she would call for her. Two years ago, Ava and her parents, Paul and Shannon, attended an Ear Community Microtia and Atresia picnic in Pleasanton, California where they were given the opportunity to learn more about bone conduction hearing devices. Ava’s parents tried to obtain a BAHA for little Ava as soon as they could, but their insurance plan under Kaiser Permanente denied their coverage for a BAHA. Ava’s mother, Shannon, also did not realize there were many options available on the market for BAHAs. Now knowing this information, Ava’s parents continued appealing with their insurance provider in order to help Ava hear better with a BAHA.
In honor of the amazing connections that happen at Ear Community’s Microtia and Atresia Summer Picnics, we’ve asked attendees to share their experiences with you here on our blog. This week, you’ll hear from Shannon Katuszonek, a mom who is forever grateful for finding her strength through Ear Community.
Here’s Shannon to tell her story.
We had no idea my daughter, Ava, had a condition. When she was born it was quite the shock. As if learning to understand what her little ear meant wasn’t enough, she was our first child, so we had little frame of reference for newborns in general.
So, we took in whatever information the doctors gave us. We knew she failed the newborn hearing screening test. Then, our Microtia Pediatrician started telling us about the other things that could be wrong with her. “She could have Goldenhar Syndrome, a heart condition and more. But, we’ll just wait and see how she develops.”
There we were…
You’re looking at this beautiful little baby that you’ve been waiting for, and now you’re so overwhelmed. You can’t enjoy the moment, because you’re so worried about all of the things that mighthappen.
We’re sharing one of our greatest assets– a list of online bone anchored hearing system forums and user groups. The communities on this list have helped so many, and they’ve helped us connect with you. With so many people looking for communities of others who can help them get answers and support, we’ve now made this list public. Better yet, we’re asking you to help us add to the list and grow it even further. Read on for access and to get the full scoop on how it works.
My 14 month old daughter Olivia was born with Microtia and Atresia of her left ear. I came across Ear Community shortly after she was born. The hospital knew absolutely nothing about her condition. No references or literature. It was a very emotional and confusing time.
As we’ve mentioned many times, one of our favorite things about summer is that it’s time for Ear Community’s Microtia and Atresia Summer Picnics. This year, in honor of the amazing connections that happen at these picnics, we’ll be sharing the experiences of attendees. We’ll start with an overview from the Founder of Ear Community, Melissa Tumblin.
“We had 220 people RSVP for our California picnic that took place in Pleasanton, California on June 21, 2014. We had Cochlear, Oticon Medical, and Stryker CMF as sponsors who attended to help families learn about their options. We had an anaplastologist there helping families not just learn about prosthetic ears, but to also physically see and touch them. Many people tune out the option for a prosthetic ear until they see how real they look and how well they can be matched to skin. Many times, in a line up, people can not pick out who is wearing a prosthetic ear because they look that real and blended,” Melissa explained. “We also had Dr. Joseph Roberson who joined us from the California Ear Institute as one of the world’s leading Otologists/Neurotologists for atresia repair and also Dr. Grant Fairbanks who helped families learn more about the rib graft option for external ear reconstruction.”
Dr. Sheryl Lewin is a Craniofacial trained Board Certified Plastic Surgeon who has dedicated her career to ear reconstruction, specializing in Microtia ear surgery using the Medpor technique. Her artistic approach and innovative surgical techniques have helped minimize scarring and create more natural appearing ears.
On May 28 at 6pm PST, we hosted a Google+ Hangout On Air with Dr. Lewin about her work. Dr. Lewin discussed simultaneous Microtia ear reconstruction surgery with bone anchored hearing device implants. She also shared more about what the Medpor technique is, a case and took your questions.