Archives for November 2018

Hazel Shelton donated her hearing device to Marvin so he could hear better in November 2018.

Meet Hazel Shelton, a sweet little 4.5 year old girl who was born with Microtia and Atresia.  Recently, Hazel upgraded to a new hearing device just before moving with her family from the United States to live in the UK.  When it came time for Hazel to upgrade her hearing device, she and her family wanted to make sure that her gently used hearing device went to someone in need.  Hazel and her mom, Jillian Shelton, know how important it is to hear your best and when Hazel’s family began looking into organizations to donate her hearing device to, they wanted to donate to an organization that not only helps children who were born with Microtia and Atresia, but one that would allow Hazel to help another child in need.  Luckily, Hazel’s family knew about the Ear Community Organization and decided to donate her gently used Baha 5 to Ear Community to help another child hear better.

The Ear Community Organization enjoys partnering with local hearing loss organizations and audiologists to help children and adults who have hearing loss whenever possible.  The Marion Downs Center in Denver, Colorado is one of the local hearing loss treatment centers that Ear Community enjoys partnering with.  This past September, Ear Community donated a few hearing devices to the Marion Downs Center, along with the hearing device from Hazel’s family.  This November, the Ear Community Organization was contacted by Dr. Sandra Gabbard, of the Marion Downs Center, who reached out to Ear Community about a patient who was born with bilateral Microtia and Atresia who had never been aided before and who was struggling to hear.  This little boy is Marvin, who is nine years old and since birth, has never been able to hear his best.  Marvin was also in need as his family is from Honduras and are in the process of moving to the United States.  Without insurance coverage or money to help cover services for a hearing device, Hazel’s gently used Baha 5 was gifted to Marvin.  A special thank you to Dr. Gabbard for helping program and fit Marvin’s donated Baha 5 so he could hear better.  Dr. Gabbard stated that “Marvin is now able to hear normal loudness speech for the first time with his BAHA!  Being born with bilateral Microtia and Atresia has prevented him from hearing his best for the past 8 years of his life. What a gift!”  Thank you also to Cochlear Americas for donating a black soft band head band for Marvin to wear his donated Baha 5 on.

Marvin being fitted with his donated Baha 5 from Hazel so he could hear better

Thank you to Hazel for donating her hearing device to Marvin and for helping give him the opportunity to hear better than he has ever heard before.   We know that Hazel and her family are thankful to have been able to help give back to another child in need who was born with Microtia and Atresia just like Hazel.  During this time of year, when many people help give back and give thanks, giving and donating is what makes it so special and being able to help make a difference in someone’s life.  Thank you so very much to Hazel and Jillian Shelton and Family for choosing to help Marvin hear better with Hazel’s hearing device!  Happy Thanksgiving and the Ear Community Organization, along with Marvin and his family, are thankful for you!

We are so happy for Marvin to have received the gift of hearing thanks to Hazel and for Hazel wanting to donate her hearing device to another child in need!  Thank you for making Marvin’s Thanksgiving this year extra special with sound, Hazel!
Thank you!
Ear Community
www.EarCommunity.org

A local elementary school in Colorado.

On Friday, November 9th, 2018, children and adults along with their families, teachers and schools, medical professionals, and many medical facilities and universities all embraced our third annual National Microtia Awareness Day all over the world!  Families everywhere were excited to raise awareness and help educate about Microtia and Atresia at schools through classroom presentations where children educated about their ears, hearing loss, and being kind and teaching about differences, enjoying cup cakes and treats.  So many children shared a newfound confidence where they got up in front of their classrooms and talked about their ears and their hearing loss (while wearing their Microtia Awareness Day t-shirts) and explained why having an awareness day was so important to them.  Adults who have Microtia and Atresia helped raise awareness in the work place by wearing their awareness wrist bands or Microtia t-shirts.  Medical professionals from Microtia and Atresia repair surgeons, pediatricians to ENTs, audiologists and dentists, all blogged about our special day on social media and hosted educational clinics for Microtia and Atresia families to attend where all options could be presented.  Our organization also received an outpouring of thank yous from families all over the world, being grateful for this special day to celebrate their children on.  Many wore our blue awareness ribbons and many also had fun creating their own drawings and wearing hand made ribbons and pins and stickers to celebrate the day!  So many families are happy to know that they are not alone with Microtia and Atresia.  Even families with newborns affected by Microtia and Atresia found hope and a sense of belongingness with everything being so new to them.  There were also a series of group gatherings that took place with Microtia and Atresia families coming together to celebrate on our special day.

The Seidman Labs Harvard genetics team w/Angela Tai and Barbara McDonough

Some of the medical facilities who embraced of our awareness day (as many offer Microtia and Atresia clinics, are conducting genetic research, or educate about Microtia and Atresia) were Vanderbilt University Medical Center, Children’s Hospital Seattle, Children’s Hospital Pittsburgh, Children’s Hospital of Philadelphia, Children’s Hospital of Texas, Harvard University, Johns Hopkins, ReconstratA, Stanford University, the University of Michigan, Children’s Hospital of Philadelphia, the NIH, the Gabriela Miller Kids First Foundation and the First Data Resource Center, the NIDCR and many government patient advocacy committees for rare causes, AudiologyOnline, HealthyHearing, SuccessForKidsWithHearingLoss, the Fundacion MicrotiaeHipoacusia in Chile and Audio Centro in Ecuador, just to name a few as I continue to receive more messages that continue to pour in.  Many hearing device companies and medical device companies such as Cochlear Americas, Med-EL, Medtronic, Oticon Medical, and Stryker CMF (the maker of Medpor) socially blogged about National Microtia Awareness Day, celebrating in their offices and educating employees more about hearing loss and Microtia.  Many amazing moments took place on this special day for families and individuals with Microtia and Atresia everywhere!  Professional artist, Priscila Soares (California) created a piece of art in the image of the Tumblin Family’s daughter, Ally, in a piece she calls “Ally is Looking Out for Microtia” which is amazing and beautiful in so many ways s Priscila creates 3D artwork of real people behind hearing loss!  Dr. David Zopf at the University of Michigan performed a rib graft Microtia repair surgery on the 9th and wore his blue awareness ribbon all day (see

The staff at the Vanderbilt Microtia and Atresia Clinic

photo below of him and his patient with his beautiful new ear).  Dr. Luis Serrano helped bring Microtia and Atresia families together at an educational event in Mexico!  Oticon Medical played educational video clips throughout the day in the office, helping educate the organization’s 500 employees in the US about Microtia and Atresia while each employee enjoyed a blue awareness day cupcake.  Oticon Medical Denmark released a beautiful video showing employees releasing blue and white balloons, embracing children and adults who have Microtia and Atresia, helping children and adults with Microtia and Atresia know that they have the potential to do and become anything in life.  Med-EL organized a radio clip on Sirius FM with NYU’s Dr. Sean McMenomey – the host of “Doctor Radio” where Microtia and Atresia was discussed along with talking about a conductive hearing loss.  A shout out to the Ear Community Organization went out at the end of the clip.  We even had country singer, Luke Bryan, wear our blue awareness band during his October 26th Detroit, MI concert after one of our support group members (Katie Davison) was attending his concert where she gave it to him and he put it on and wore it during the rest of the concert!

Hundreds of children and adults, along with their families, submitted pictures to online support groups in their National Microtia Awareness Day t-shirts and/or wearing blue and black, celebrating and helping promote awareness.  Many changed their online profile pictures to our Ear Community awareness ribbon.  Many also changed their Facebook profile pictures to the beautiful official Microtia Awareness profile frames/boarders on Facebook created by Ear Community support group members Megan Mitchell and Mark Johnson.  Our Microtia Awareness FB frames were used over 1,500 times!  Excitement about celebrations everywhere were blogged on Instagram, Twitter, and Facebook.  Not only did families celebrate in the US, but also from many countries all over….Canada, the Philippines, Ecuador, Peru, Argentina, Mexico, Costa Rica, Australia, Malaysia, Denmark, the UK, Poland, Ireland, China, Israel, Indonesia, New Zealand, Russia, Denmark, Germany, Facebook Global, Netherlands and Turkey and many others.   Many families from other countries have embraced November 9th as International Microtia Awareness Day!

November 9th is dedicated to spreading hope and knowledge concerning a congenital birth defect, which derives its name from the Latin terms for little ears.  Mark the calendar for Microtia Awareness Day for November 9th and think of the number 9 as the shape of an ear.  In an interview with AudiologyOnline, Tumblin was asked “Why was it so important to have a national awareness day created?  Tumblin stated, “It is the intention of Microtia Awareness Day to help promote public awareness.  As the mother of a child who has Microtia, and the founder of Ear Community, my hope is that families who have new babies born with Microtia will leave the hospital armed with more answers than questions, and their dreams for their children intact.  I think that if more people learn about Microtia and Atresia, that they will be kinder and more accepting.  It is also my intention for anyone who is born without an ear(s) to realize that they are not alone.  Through this national day, they can find out about organizations and resources for information and support.”  Since 2010, the Ear Community Organization has brought over 8,500 people together from around the world at the organization’s events making it possible to share experiences and resources. The community is made up of not only children and adults with Microtia and their families, but teachers, advocates, and medical professionals from around the world who foster awareness and assistance for this amazing group of people. Board members for Ear Community either have the condition themselves or a family member who does, so they have close personal experience with the obstacles from a myriad of perspectives.In a press release by, Melissa Tumblin, Founder of the Ear Community Organization, she explains that “Approximately one child in every 9,000 (in the United States) is born with Microtia (when the ear(s) do not fully develop during the 1st trimester of pregnancy).  Often affecting one ear or both ears, Microtia is diagnosed at birth, but there is no understanding as to why Microtia occurs. Facial challenges, hearing loss and the longing for social acceptance are some of the daily concerns for those who are born with Microtia.  “Children are born into this world not knowing they are any different from anyone else. Many with Microtia share similar stories of curious stares, bullying, or awkwardness.  Individual personalities, social conditioning, available treatments and bullying all impact how every child develops and copes as an adult.  By removing unnecessary boundaries and replacing them with resources, tools, and support, we can eliminate bullying and clear the way for an even more successful future.”

Oticon Medical Denmark awareness day video here (via Facebook).
Oticon Medical Denmark awareness day video here (via LinkedIn).

A thank you from the Founder of Ear Community, Melissa Tumblin:
“THANK YOU to everyone who embraced and participated in National Microtia Awareness Day this past Friday on November 9th! My heart is filled with so much love and joy, seeing the belongingness of so many families around the world who have been able to come together with children and adults who have Microtia and Atresia. From friends and family to surgeons, ENTs, audiologists, dentists, therapists and local businesses, to the medical device companies who help our children hear better and have the option for reconstructed ears, to the schools and teachers who enjoyed their students making presentations in the school classroom with a new found confidence in themselves, to families and medical professionals and the government organizations and universities who raised awareness all over the world for our beautiful children and adults who have Microtia and Atresia, promoting education, awareness, and kindness – Thank you! As Ally says, “everyone is beautiful!”

Here are some amazing memories from our 3rd Annual National Microtia Awareness Day!
See everyone next year!
Ear Community
www.EarCommunity.org

Estafany Martinez Hernandez, 8 years old of South Carolina, with her two newly donated Oticon Medical Ponto 3 Superpower hearing devices

Ear Community is thrilled to introduce you to Estefany Martinez Hernandez, an 8 year old little beauty who lives with her mother in South Carolina.  Earlier this year, Estefany moved to the United States from Honduras and has had an uphill battle ever since. Estefany was born with bilateral Microtia and Atresia as well as a cleft palate (which has since been repaired).  Her first language is Spanish, and after moving to South Carolina, she was thrown into school where only English is spoken. She has struggled with the language barrier all without equal access to sound! Still, Estefany perseveres and is able to get access to language through her mother, they sit very close together and Estefany reads her mother’s lips.

In the Spring of 2018, Estefany’s situation was brought to the attention of Dr. Dorothy Saxon, who works with Estafany’s school district. Dr. Saxon had been to an Educational Audiology Association conference in Arizona where Melissa Tumblin presented about Microtia and Atresia as well as Ear Community.  Naturally, when Estefany walked into Dr. Saxon’s life, she immediately thought of Ear Community. Dr. Saxon reached out to Melissa and it quickly became apparent that Ear Community can and should help Estefany get access to sound.

After a unanimous vote from our Ear Community Board of Directors, Estefany was granted a donation of two brand new Oticon Medical Ponto 3 Superpower processors for her journey towards sound could begin!  It has been a long, and bumpy road – between finding interpreters for Estefany’s sweet mother who speaks only Spanish, and getting schedules to coincide so that the fitting could take place.  Amazingly, and just in time for National Microtia Awareness Day, Estefany received her two Oticon Medical Ponto 3 Superpower processors on November 7th.  Estefany absolutely loves her new devices, and some of her first words after having them fitted were, “Thank you for my new sound!”  

A very special thank you to Alan Raffauf, Vice President of Marketing and Operations for Oticon Medical US, for choosing to donate the new Oticon Medical Ponto 3 Superpower hearing devices to Ear Community so that they could be donated to Estefany to help her hear better from here on out. Thank you to Beverly Ostrowski, Director of Customer Service, with Oticon Medical for helping get Estefany’s hearing devices to her so quickly, and a very special thank you to Dr. Dorothy Saxon for her tireless efforts to help Estefany hear.  Thank you for everyone’s support and for helping Ear Community continue with its mission of helping individuals with Microtia and Atresia. Oticon Medical believes in helping individuals with hearing loss so that they can live a better quality of life. 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.”

We are so grateful to be a part of Estefany’s journey, and cannot wait to see all that she accomplishes now that she has access to sound.  Welcome to the United States, and welcome to the Ear Community family, we wish you all the very best from this world!
Thank you!
Ear Community
www.EarCommunity.org 

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.

The 4 Grades-of-Microtia-and-Atresia

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 500 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 Hemifacial 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.

The Microtia Awareness Ribbon

Here are some ideas for helping raise awareness on National Microtia Awareness Day, November 9th, 2018:

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, hemifacial 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 D/HH, 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 and streamer)

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

and to Medtronic (Alpha 2 MPO E+) sound processor