Archives for October 1, 2019

National Microtia Awareness Day is on November 9th!

We look forward to helping raise awareness with so many of you everywhere on National Microtia Awareness Day! The purpose of National Microtia Awareness Day is to help promote public awareness about Microtia and Atresia. As the mother of a child who has Microtia and Atresia, and the founder of the Ear Community Organization, my hope is that families who have new babies born with Microtia and Atresia will leave the hospital armed with more answers than questions, and their dreams for their children intact. If more people learn about Microtia and Atresia, they will be kinder and more accepting. It is also my goal for individuals with Microtia and Atresia to realize that they are not alone and that they have an entire community of support behind them.Through this national day, everyone can find out about organizations and resources for information and support.

Microtia – born with one or both ears missing or when the outer ear does not fully develop

Aural Atresia – born without an ear canal or an underdeveloped ear canal, resulting in a conductive hearing loss

Approximately 630 babies are born each year with Microtia and Atresia in the United States (affecting 1 out of every 6,000 births). Current statistics show that Latino-Hispanic, Ecuadorian, Asian, and Native American ethnicities are affected more by Microtia and Atresia where as individuals who are of African American descent are the least affected. Most families who have a child with Microtia and Atresia have never known anyone else in their family to have missing ears or congenital hearing loss, while many other families have multiple family members who are affected by Microtia and Atresia causing us to wonder if Microtia and Atresia is hereditary. It is more common for Microtia and Atresia to affect the right ear and occurs more commonly in males. Microtia and Atresia can affect one or both ears and can cause asymmetry of the face (where one jaw bone pulls upright more so on one side) known as Craniofacial Microsomia. Typically, children and adults who have Microtia and Atresia have some degree of hearing loss. Children and adults who have Aural Atresia (hearing loss) can wear a hearing device called a bone conduction hearing device (also know as a Baha, BAHS, or BAI). A bone conduction hearing device can be worn on a soft band head band (because there is usually no ear for a hearing device to be worn on) or can be implanted in the skull after the age of five.

Today, there are many options for helping someone obtain an ear who has Microtia and Atresia and who would like to live a better quality of life and be happier.
1.  The “Do Nothing” option should always be embraced with acceptance and confidence and love for oneself. Also, to remember to never let anything define you. Be YOU and be proud of who you are!
2.  There are surgical options for a reconstructed outer ear such as the rib graft surgical technique (which is the gold standard option) and different kinds of Polyethylene ear frame work options known as Medpor, Omnipore, and Su-Por. There are also other avenues for ear reconstruction that can involve soft tissue reconstruction and ear expanders to help improve the shape of an ear.
3.  There are surgical options for helping restore hearing loss and reconstructing an ear canal called canalplasty and atresiaplasty. This surgical technique can be done separately or in conjunction with a reconstructed outer ear (know as CAM – combined Atresia Microtia).
4.  There is the prosthetic ear option. This option can help someone permanently wear an ear or be a great temporary solution until deciding upon surgery or to keep their little ear just the way it is.
5.  There is a hearing device option to help someone hear better who has Atresia called a bone conduction hearing device. This hearing device can be worn on a soft band head band (since there is no ear to be worn on) or later be implanted in the skull for when the patient is ready.

Here are some ideas for helping raise awareness on National Microtia Awareness Day, November 9th, 2019:

1. Many parents, teachers, and children plan to help raise awareness at their schools. There will be talks and presentations about hearing loss and Microtia and Atresia. Many educators and parents will also be discussing differences and kindness. Everyone has something going on and it makes everyone happy to feel included, or to have someone just say “Hi” to you instead of being stared at or being treated mean in one manner or another. Many families plan to bring in sweet treats to the schools, such as cookies and cup cakes, to help embrace our awareness day and make it fun!
2. Many medical professionals (audiologists, ENTs, and plastic surgeons) will be hosting educational clinics and blogging helpful information about Microtia and Atresia for families to learn more about their options for Microtia and Atresia.
3. Many families, teachers, medical professionals, and supporters within the Microtia and Atresia community will be wearing awareness t-shirts, ribbons, and wrist bands, helping raise awareness about missing ears, craniofacial microsomia (craniofacial challenges), and hearing loss.
4. Many can participate in spreading awareness through social media by simply changing your profile picture to our awareness ribbon, logo, or FB frame to help recognize National Microtia Awareness Day on November 9th! We look forward to seeing so many pictures posted of everyone in their shirts or wearing blue with our blue ribbons so we can all enjoy seeing how special our day is and the impact it has on the public (world) for so many of us who have loved ones born with Microtia and Atresia. Let’s join together and make a difference with these beautiful children and adults and their families through the Ear Community Organization on our awareness day!
5. Many hearing loss networks such as AudiologyOnline, organizations like the EAA and ASHA, and medical device companies will be blogging about our National Microtia Awareness Day on social media in hopes of helping raise awareness about Microtia and Atresia, helping support our Ear Community Organization, and to help educate everyone about “all” options for missing and underdeveloped ears, hearing loss, and facial challenges and in hopes that everyone will be kinder and more understanding.

Thank you, thank you to everyone for embracing our awareness day and for supporting our children and adults who have Microtia and Atresia in our community. Thank you to all of the families, classroom teachers and teachers of the Deaf and HoH, therapists, audiologists, ENTs, pediatricians and general practitioners, and plastic surgeons for helping educate on our day and for taking the time to learn more about Microtia and Atresia to help teach others. Thank you to everyone who will be blogging on social media and publishing articles to helping raise awareness on November 9th! Thank you very much to everyone who has helped support our Ear Community Organization and it’s mission to help children and adults who have Microtia and Atresia!

A special thank you to Ear Community’s amazing sponsors for also helping raise awareness about Microtia and hearing loss and for making our events possible and for offering advanced technology that helps our children and adults in many ways. Thank you also to our sponsor companies and the employees who stand behind these companies and their technology that give our loved ones a better quality of life!

Thank you to Ear Community’s Platinum Sponsors:
Cochlear Americas (Baha 5 and SoundArc sound processor)
Oticon Medical (Ponto 3 Superpower, Ponto 4 and streaming device)

Thank you to Ear Community’s Silver Sponsors:
Med-EL (ADHEAR and Bonebridge sound processors)
Stryker CMF (Medpor outer ear implants)

Gabrielle E. Ayala-Montgomery, Ear Community college scholarship recipient, September 2019, Washington.

Ear Community is pleased to introduce you to the beautiful Gabrielle E. Ayala-Montgomery, our second College Scholarship applicant for the year! Gabrielle reached out to us this Summer and shared a little with us about her desire to become a lawyer.

Gabrielle was born with Microtia and Aural Atresia of her left ear as well as craniofacial microsomia. As a result, she experienced a decade of orthodontia and lives with significant hearing loss on her left side. Medical professionals tried to tell her parents that she would struggle in school, and it would be difficult for her to succeed academically. Well Gabrielle is a fighter and proved them all wrong! She studied hard and more than excelled in school. She was consistently on the Dean’s List and graduated High School Phi Beta Kappa.  Gabrielle said, “I realized that my disability was only a societal limitation if I allowed it to be.”

Her experiences pushed her to pursue a degree to help others navigate the judicial system and grant them the fairness they deserve. Gabrielle also shared that she is of Mexican descent and has embraced her Mexican-American identity. Since starting college, Gabrielle has begun taking Spanish classes to be able to communicate with extended family members, and she has been involved with organizations that help mentor at-risk youth in her community. In her application letter, Gabrielle shared, “the rediscovery of my culture and language has helped me realize that a career in international, immigration, or civil rights law will help me fulfill a personal obligation, paving the path for a more just future for others – especially disadvantaged populations.”

Gabrielle has a true passion for helping others who live in the margins of society, because she has been there and walked those paths. Ear Community is honored to award her a $750.00 scholarship for furthering her education. Gabrielle will be finishing her law degree at the University of Washington Law School and will graduate in 2022. We cannot wait to see the difference she makes in the world, as she is a true force to be reckoned with!

Ear Community would like to extend a warm thanks to all of our supporters and donors who make scholarships like this possible. We could not continue this important work if it weren’t for the continued support we get. We would also like to thank Tortoise Advisers and Brent Newcomb for helping us be able to award Gabrielle’s scholarship. Brent is a brother to one of our board members, Scott Newcomb, and we are so grateful for their passion and support.

Gabrielle, we wish you the best of everything as you finish up your law degree and will watch anxiously at the life-changing work you will do in the lives of so many!

Brian Campos Valladares, recipient of 2 Oticon Medical Pontos, September 17th, 2019, Virginia

Often times Ear Community works with various early intervention services, and other professionals who support children with Microtia and Atresia. This past Summer, a school nurse, Danielle Vukadinovich, reached out to us in an effort to help one of the students at the school she works at. Brian Campos Valladares, a 9-year-old boy with Bilateral Microtia and Aural Atresia. Brian and his mother recently relocated to the United States from El Salvador where they had to leave Brian’s father behind.

When we first heard about Brian’s situation, our hearts poured out to him. Here was a little boy, in a strange new country, where everyone spoke a different language that he couldn’t even hear. Growing up in El Salvador, Brian was exposed to Spanish from his parents, but being as he has Bilateral Microtia and Atresia – resulting in moderate to severe hearing loss, he could barely hear what his parents tried to say to him. Brian and his mother, Yancy, have been fighting every day to create a better life for themselves and part of that was Brian getting a good education.

Danielle helped Brian get a hearing test done, and the school was able to help him get a loaner Baha to use temporarily for school so he could learn English quicker as well as have more access to sound. He is attending a new school this year in Virginia that is specifically for the Deaf and Hard of Hearing, which will be so great for him to be around other kids like him and where teachers have a deeper knowledge base of hearing loss and how to work around it.

When Brian’s application first came to Ear Community, our board voted a unanimous ‘YES’ to help him with 2 Oticon Ponto’s so he could have full access to sound! We have an incredible Board of Directors who have such a passion for helping children gain equal access through sound. Brian’s journey wouldn’t be complete without us thanking several key individuals. First of all, of course is Brian’s mother Yancy – who has worked tirelessly to provide a better life for her son. Danielle Vukadinovich, a school nurse who went above and beyond to help a student assimilate into his new country and school. Leslie Viladegut, Brian’s case manager who helped to facilitate the details of his fitting. Thank you to Yenny who worked closely with Brian’s case at the audiology office. Also, a very special thank you to Dr. Mary Finkbone who donated her time to program and fit Brian’s devices.

On September 17, 2019, Brian was finally fitted with his “new ears” and he was thrilled!  Oticon Medical even sent a stuffed animal “Massie” monkey that has a Ponto and he named his “Brando”.

A very special thank you to Alan Raffauf, Vice President of Marketing and Operations for Oticon Medical US, for choosing to donate the two new Oticon Medical Ponto 3 Superpower hearing devices to Ear Community so that they could be donated to Brian to help him hear better. Thank you to Beverly Ostrowski, Director of Customer Service, with Oticon Medical for helping ship Brian’s hearing devices. Oticon Medical is a well-respected international hearing device manufacturer that is a part of the “William Demant Group [which has] 100-plus years of experience in audiology and sound processing and established manufacturing and logistics infrastructure.”

Lastly, to Brian – thank you for allowing us to be a part of your journey, may you hold your head up high and savor each moment that life gives you. We cannot wait to watch how you soar now that you have full surround-sound and can thrive at school, home, and making new friends!