November 9 is Microtia Awareness Day

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November 9th is the first ever Microtia Awareness Day in the US, and is dedicated to spreading hope and knowledge concerning the congenital birth defect, which is named efter the Latin terms for little ears.

Approximately one out of every 8,000 babies are born with Microtia – a malformed outer ear – either on one or both sides. Children born with microtia will usually have a functioning inner ear, but as the outer and middle ear are affected, they will have conductive hearing loss. For children with microtia a conventional hearing aid is more than likely not an option, however they may benefit from a Baha solution that doesn’t require an outer ear to sit on and can bypass the problem and send sound directly to the inner ear.

The Ear Community Organization founded Microtia Awareness Day in 2016 and was submitted by the Tumblin family. Melissa Tumblin founded Ear Community in 2010 after stumbling through the hurdles and challenges of finding answers for her daughter when she was born with Microtia. Since then, Ear Community has brought over 6,500 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 either have the condition or a family member who does, so they have close personal experience with the obstacles from a myriad of perspectives. The Registrar at National Day Calendar approved Microtia Awareness Day in October.

Mark the calendar for Microtia Awareness Day for November 9th and think of the number 9 as the shape of an ear!

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Download the Atresia/Microtia folder here

Wearing the Baha Attract System with long hair

QuestionMy daughter is 15 and has hearing loss in one ear. She also has long hair which she likes to wear both up and down. Being a teenager, one of the things she’s really concerned about is whether she has to have any of her hair shaved off to have the Baha 5 Attract System, both for fitting and then for everyday wearing. I’ve been unable to find anything online to answer her questions. It would really help to see a video of someone with long hair wearing the Attract System and taking it on and off. Can you help or point me in the right direction?

Many thanks! // Janet

Answer: Hi Janet, thanks for your question.

Your daughter would need to shave a small area of her hair for the surgery. But in most cases it grows back with no problem.

In these videos of Jon and Cindy, you can see them putting on their magnets and sound processors. And here are a few other photos which illustrate what it looks like with the sound processor on and off:

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Here’s Destiny with her hair grown back after surgery.

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Jo from Australia chose the Baha Attract System because it was “so easy”.

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Brian’s thick hair almost completely camouflages his magnet and sound processor.

Please consult your health care professional who can recommend the right hearing solution for your daughter!

//The Baha Blog team

What’s it like living with the Baha System?

QuestionI lost all hearing in my left ear last year following a failed stapedectomy operation; resulting in total sensorineural deafness due to damaged inner ear. I have Otosclerosis and have moderate hearing loss in my right ear as well (hence the reason I went for the operation).

Since the operation I’ve been struggling to cope with having only partial hearing. After living with two functioning ears (albeit without perfect hearing) for 40 years and now being left single sided deaf is truly awful (to put it mildly).

I’ve been offered a Baha solution on the NHS and have trialled the Cochlear test ‘headband’ as well as the CROS aid. I’ve been impressed with both but found the Baha solution gave a more ‘natural’ sound and I’m feeling fairly confident that I’m going to go with it (the ‘Baha Connect’ version, not ‘Baha Attract’). I had good results from the bone conduction test (scoring 90% in the speech recognition part).

I do, however, have several questions/concerns about living with the implant and sound processor:

1) Is it painful to lie on or if it gets knocked? I’m worried that it might make sleeping difficult when I rest my head on the implant side.

2) How does the sound quality/amplification compare with the test headband? I’ve read that the real thing is better but how much louder/clearer is it eg – 10% 20% 30% more?

3) Is the Baha sound processor uncomfortable if worn all day?

4) Since losing the hearing on one side my tinnitus has become even worse. For Baha users, does it become any less noticeable in the longer term? (Why is there no cure for tinnitus yet?!!)

Obviously I will be asking the qualified people at hospital these questions and more, but it would be really helpful if I can get some answers here.

Thanks! // Drew

Answer: Hi Drew,

Congratulations on your decision of getting a Baha System! Let me try to answer your questions, one by one:

1) You will not be able to “feel” the implant, however the tissue around it may feel sore or numb right after the surgery. This usually resolves over time. You may hear some sounds as you rub the implant against a pillow or similar, but there is an abutment cover available to cover it if it bothers you.

2) This is impossible to answer exactly as it varies from person to person, however, as a rule of thumb we say that the amplification increases by about 10-15 dB when attaching the sound processor to the implant compared to the headband. The biggest increase is in the high frequencies which will make the sound clearer.

3) When the Baha sound processor is attached to the implant you will not feel that you are wearing anything.

4) Tinnitus may be caused by hearing loss like you experience. Research has shown that for some users the tinnitus is relieved when using the Baha System, however, that is nothing we can promise.

Always consult a hearing healthcare specialist who can recommend what hearing solution is best for you.

~ Fredrik Breitholtz, Head of Training and Clinical Communication, Cochlear Bone Anchored Solutions

Read more: 12 golden rules for living with your Baha System

Congratulations to newlywed Baha user Camille!

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In 2013, high school student Camille Masino became our 100 000th Baha user!

Camille is a bilateral Baha user, born with Goldenhar syndrome who has overcome countless hurdles in her 22-year old life. Check out her story about being able to dance the ballet without hearing the music here.

Well – last month she got married and we caught up with her to hear all about the happy news:

Q: Camille, so you’re MARRIED! Wow, congratulations, how does it feel?
A: I LOVE being married! I married my best friend. And now I get to spend every day with him forever. We are both so happy. And he makes me so happy and feel loved. Dylan is perfect!
Q: How long have you been together?
A: We started officially dating in April of 2015. We met when we were both serving a mission in St. Louis, Missouri. We were both good friends on the mission but we didn’t get to know each other that well until we were both back in Utah going to school. We both went to a mutual friends concert. The whole night we talked. Two weeks later he asked me out on a real date on April 20,2015.

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Q: Describe your wedding!
A: We were married in the Los Angles LDS Temple. It was a beautiful day! And it was very special that we had my Grandfather marry us. You could feel the love and strength in the room we were married in. Walking out of the ceremony as Mr. and Mrs. Reay for the first time in my wedding dress was a beautiful moment. My Baha sound processors helped through out the whole day. I could hear my grandpa during the ceremony as he was marrying us. I could hear our families and friends cheering as we walked out of the temple. I was able to talk to everyone at the reception and thank them for their support. And we had a big dance party at the end of the night. My Baha devices helped me not miss a single word and be in the moment during our special day.

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Q: What has your husband said about your hearing loss?
A: My husband has been a big support to me, my hearing loss, and all of the other health challenges that I do have. I remember the first night when I told him about my Baha solution and all of the health challenges I have, his exact words that he told me were “I’ve never wanted an ordinary life, I like to do things different.” Dylan tells everyone that I have super hearing, he finds the Baha system amazing! Dylan will always tell me that my imperfections make me perfect. He is so good to me. I love him so much! And I know that he loves me too.

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Q: Do you still dance?
A: I still dance. I will always continue to dance. And now I have someone to dance with through life.
Q: What’s the next step for you two?
A: Right now we are finishing school. I am at Brigham Young University Provo, UT studying special education. And Dylan is at Utah Valley University studying marketing. Life is so good and simple right now. And maybe in a few years Dylan and I can start a family. We can’t wait to have a beautiful and unique family. We hope to have the chance to adopt some children. Our life will always be unique, but I know with Dylan it will always be happy. Dylan is my best friend and we can do anything together.

Dylan: I am so lucky to call Camille my wife. I think about how lucky I am everyday that I found someone as wonderful as she is. In my eyes, she is perfect. She has gone through so much in life, yet she is the most happiest and positive person that I know. She is beautiful inside and out. I love her so much! She is my best friend.

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In the news: Baha surgery transformed 15-year old Joey’s life

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Surgeons at Newcastle’s Freeman Hospital in the UK have helped transform the life of 15-year old Joey Mains by helping him hear fully for the first time.

From Chronicle Live:

15-year old Joey Mains eyes “lit up” when Newcastle doctors uttered the first words he had ever heard clearly.

For years Joey had suffered hearing and ear problems, struggling at school he was forced to learn to lip read as his confidence hit rock bottom.

Now, after an operation to fit a bone conduction hearing device at Newcastle’s Freeman Hospital, Joey’s life has been transformed forever. Previously, although his speech was good, his social skills in school weren’t developing well and his self esteem was hurting. Now he’s much more outgoing – and confident.

“I now realise that all along, I’d never known what it was like to be able to hear properly, to really know what the world sounded like […] I feel much more confident in myself. I can keep up with conversations.”

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At first, Joey wanted to put off the Baha operation after having to undergo no less than nine surgeries for mastoid problems between the age of four and 12.

But the Baha procedure was much easier than he thought and he returned home the same day!

Two weeks later, he was back to have his sound processor fitted – and suddenly the world became a different place.

His mother Karin says:

“Mr Johnson, the surgeon, stood behind him and said a few words which, of course, Joey couldn’t hear. Then he put the Baha sound processor on, and went back again. Suddenly Joey could hear what he was saying. I’ll always remember that moment. Joey’s eyes lit up. It was like someone had thrown a light switch. I started crying with tears of joy and relief.”

Read more: Signs of hearing loss in children

On which side would I benefit most from a Baha System?

Question: Near deaf in left ear, moderate loss in right ear. Which side would a Baha System benefit me? Also would it be feasible to wear on the near deaf side along with an OTE hearing aid on the moderate hearing loss side? // Eugene

Answer: Dear Eugene,

A great question but one that I can’t answer definitively I’m afraid, as a recommendation would depend very much on the exact type and degree of hearing loss you have.

If all or most of your hearing loss is conductive, resulting from issues in the outer or middle ear, a Baha System will be a good solution. It will also be useful if you are deaf in one ear and have normal hearing on the other, then the system will send sound through the bone to your hearing ear.

The Baha System can compensate for some hearing loss in the inner ear (sensorinaural loss), however, for hearing losses that are mainly resulting from problems in the inner ear there are better solutions like hearing aids, or in more severe cases, cochlear implants.

Only a hearing care professional can really evaluate your hearing loss and recommend a solution for you.

~ Fredrik Breitholtz, Head of Training and Clinical Communication, Cochlear Bone Anchored Solutions

 

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What shampoo can I use after Baha surgery?

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Question: Hello, I’m having my Baha surgery on Monday and was just wondering how soon after I can wash my hair, and if there is any special shampoo that you recommend? Thanks! //Kelly

Answer: Hi Kelly,

Thanks for your question. According to Dr Pete Weber, you can shower the day after the surgery, just don’t rub the area but gently press it. He recommends a hypoallergenic shampoo, such as baby shampoos.

Once the dressing is removed, you should carefully wash your hair and use an alcohol-free abutment cleaning wipe to keep the skin clean for daily maintenance.

Always consult with your health care professional on what steps you should take after the procedure.

Best of luck!

~ Jay Patterson, Product Manager, Implant & Surgery, Baha & Vistafix