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Interview with Melissa Tumblin, Founder, Ear Community

Melissa Tumblin

July 16, 2012
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Topic: Ear Community - Online Resource for Microtia/Atresia
CAROLYN SMAKA: Melissa, tell me how the Ear Community came about.



MELISSA TUMBLIN: My primary goal for founding Ear Community is to help make things easier for the next family that has a baby born with Microtia and Atresia. Based on my personal experience, along with listening to the experiences of many other microtia/atresia families over the past two years, there is a tremendous need for information and support throughout the world. A majority of us encountered a similar situation when our children were born, and we weren't told much about microtia and atresia. In many cases, a pediatrician may have never had a microtic-atretic patient before and your child may be the first in their practice. So, a pediatrician may not have the details about microtia/atresia and he/she may not know what to tell parents from emotional support, to what to expect and what helpful resources are out there.

SMAKA: I would think that most people don't even know what microtia or atresia is until they have a family member who has it.



Melissa Tumblin

TUMBLIN: That is exactly right. My husband and I had never heard of microtia/atresia until after our daughter Ally was born. Since I would be 35 years old by the time I would deliver Ally, I decided to have a quad screening to help ensure that my pregnancy would be a healthy pregnancy. However, although my prenatal testing was normal, the quad screening did not reveal that Ally was missing her right ear and ear canal.

When I delivered Ally, I remember my husband, Brent, coming over to me with tears welled up in his eyes as he told me "something is different about one of Ally's ears." I asked him if her ear was cropped and he shook his head no. When the doctor brought Ally over to me, we welcomed her and saw her beautiful smile, but we were shocked to discover that Ally was missing her right ear. Immediately, I began blaming myself thinking I had done something wrong during my pregnancy and wondering if I had eaten or drunk something that could have caused this. Even when we asked about Ally's ear in the operating room, no one knew what to say to us and so of course we became concerned and didn't know what to think or do.

SMAKA: How did you find out what Ally's diagnosis was?

TUMBLIN: Brent ended up going home the night that Ally was born. He researched it online and came back and told me, "I think she has microtia." The next morning our pediatrician confirmed that Ally had microtia. We did not know Ally had atresia, though. We were not told about Ally having atresia until our first ENT appointment, a few months later. Thankfully we had the newborn hearing screening in the hospital, and Ally was referred because of her right ear. Our pediatrician referred us to an ENT, and also told us to schedule a full audiological evaluation. I'm very grateful as I've spoken with many families who have had children with microtia/atresia that were not referred to an ENT or to an audiologist following the delivery of their child.



Brent Tumblin with Hailey and Ally.

SMAKA: So you thought you were dealing with microtia, and then you found out that Ally also had atresia.

TUMBLIN: Yes. We were told that our child had atresia by an ENT at our local children's hospital. He was wonderful, and spent extra time with us on that first visit, so much so that he fell behind in his appointments for the day. Yet, even he did not have all the answers. When we asked about surgery, we were told, "She'll be fine, but we can't do anything for her until she's closer to the age of 9 or 10," because he was referring to rib graft surgery. Then he said, "She will be fine. She has one good ear. That's good enough." When I did more research, I started finding out one good ear is not good enough, and that unilateral hearing loss puts children at risk for speech, language and academic delays. I now know that a speech and language evaluation, regular audiological evaluations and monitoring, and amplification are often needed for children with microtia/atresia. When a child is dependent on one ear, even a temporary hearing loss in that ear from an ear infection is significant. A child's hearing may also change or degrade over time and it is very important to monitor their hearing in the good hearing ear.

We thought we had asked all the right questions when we met with the ENT. We asked about a hearing aid. Of course, I didn't know what kind of hearing aids were available, but I knew Ally would likely need something to help her hear. We were told, "Well, she's not a candidate for a cochlear implant." There was no mention of Baha.

We thought we just had to bring her back in a year for follow-up and there was nothing else we needed to do until she was 9 years old. Through our own research we learned otherwise. There are so many things we've learned these few short years with Ally. I formed Ear Community to try and help other families so they could be informed and wouldn't fall through the cracks like we did.

SMAKA: It seems a lot of the information you found was from your own research, and not from doctors or other professionals.

TUMBLIN: Yes. After seeing the ENT, I took some months off from researching to deal with my own feelings, and then I stumbled across another support group and some bits and pieces of information online. There was nothing really in depth and thorough - it was all very general and scattered about various websites and forums. Some of the information I had found was not current or correct either. When I did find some information about a Baha I couldn't believe that people had a Baha on their child since they were a few weeks of age. When I found this out I felt like I was behind with Ally. Ally is now almost 3 and she is speech and language delayed - I can't help but wonder if she had a Baha a little bit earlier, maybe it would've helped her? Maybe or maybe not - at this point we don't know, but I would have appreciated the peace of mind knowing I had information about all the options in order to make the best decisions for her. Ear Community provides all the latest, up to date information for families in one place, so that they can learn about all of their options and help make the best decisions for their child or for themselves as an adult with microtia/atresia.

SMAKA: Do you have any ideas about why there is this lack of good information about microtia/atresia for families out there?

TUMBLIN: One main reason I believe is because microtia/atresia is fairly rare. For example, I recently heard on the news that port wine stain birth marks occur in approximately 1 in 400 people. Yet, as common as this is, you don't really see people with port wine stains very often. Now, consider that in the U.S., microtia/atresia has a 1 in 6,000 to 1 in 12,000 chance of occurring. If you think that you very rarely see port wine stains, and the incidence of microtia/atresia is far less, it puts it into perspective of how rare microtia/atresia really is.

Additionally, I think that unilateral hearing loss is misunderstood. There are many medical professionals in the audiology community that believe "one good ear is good enough". When I started doing research on unilateral hearing loss, I reached out to two audiologists - Dr. Linda Cox and Dr. Cheryl DeConde Johnson. They helped me to understand the research on unilateral hearing loss and how it impacts a child. In addition to difficulty with the localization of sound, children with unilateral hearing loss are at risk for falling behind academically as well because they may struggle to hear everything in a classroom setting and to hear certain pitched syllables during the critical years of development.

When Ally is not wearing her Baha and I call to her to get her attention, I'll watch her try to find me. She will look around and try and try until she practically gives up. She cannot locate where the sound is coming from. Even when I call for her from across the playground, I can see her looking for me but she's not always looking in the direction of my sound.

In Colorado, where we live, we've had significant cuts to school budgets, and cuts to services and resources for children with unilateral hearing loss. Children with unilateral hearing loss not only need to be on par with their peers, but they also deserve the opportunity to excel, just like other children without hearing loss.

The third reason why information about microtia/atresia is not more widespread I think comes down to the medical profession and medical facilities in general. It is just not on the radar. When Ally was born, we weren't told about early intervention services, nor did we receive a phone call or follow up to have an evaluation. We definitely thought we were all alone. Each professional we saw had a different opinion. Some of them never offered a Baha as an option, others carried only a certain brand of sound processor (Baha). One audiologist told us our daughter couldn't be aided until the age of five. There are families that travel out of state for services, and others who drive 3 - 4 hours or more because providers in their area do not offer a Baha. Many of these families are in progressive, urban areas, too.



Ally hears with her new Baha for the first time.

SMAKA: It's not even been 3 years since you had Ally. How have you been able to get so much comprehensive information, and build such a large, engaged community so quickly?

TUMBLIN: All I can say is that it's a labor of love. When you're passionate about something, you end up staying up well into the wee hours of the morning working on it, and it's that passion that drives you. In addition to wanting to help Ally and find out every single option of how I can help her, I could not live with myself if I did not share this information with others on the same journey.

It is unacceptable to me that with all of the medical advances and knowledge that we have today, that people are not given information or accurate information when they have a child with microtia/atresia. I cannot accept that each parent and each family needs to go through this alone or not be provided with all of the options that are currently available today so they can make the decision that is best for them.

SMAKA: So you started with a Facebook group?

TUMBLIN: Yes. On May 20, 2010, I founded the Microtia and Atresia Support Group on Facebook. Initially, I was worried that no one would join. Before I knew it, a year had passed and we had people from all over the world who became a part of it.

I started with a section called "Where do I begin?" This section provides information from reassurance that their child will be okay, to being aware of early intervention services and the importance of testing for hearing such as the ABR, renal ultrasound, EKG and ECG, since many babies with microtia/atresia have associated heart and renal issues. When Ally was born, I was really caught up in my emotions and felt sad and horribly guilty for what I thought I had done to Ally, and I didn't know what her life was going to be like. There are a lot of feelings that come along with having a baby with microtia/atresia and I also wanted the support group to provide emotional support to one another. There are over fifty discussion topics ranging from emotional support, to how to find eye and sun glasses for individuals who are missing one or both ears, surgical technique information, a where are you from section, a community photo album and articles that I have written on my personal experience with Ally and microtia/atresia and these are just to mention a few topics. The Ear Community website contains even more information than the support group and I can now reach even more individuals and families around the world who do not have Facebook.

SMAKA: What kind of feedback have you had?

TUMBLIN: The response has been tremendous, both from families of babies and children with microtia/atresia, from medical professionals, and even from adults who themselves have microtia/atresia.

I've posted some of the positive feedback to the Ear Community website in the About section, and I can give you a few examples. I recently received a call from a mother who said, "Melissa, I just want to thank you. I was on the Ear Community site reading through your emotional support section. I've had doctors tell me that I need therapy for having so much guilt and worrying about what I did and I should learn to let it go. After reading through your site, it made me feel normal and that I am not alone." I also had a woman email me and say, "Thank you, I had no idea that I had microtia and atresia until I found your site. I'm 45 years old. Thank you for helping me find out what's wrong with me and for telling me about the Baha. I was told that I would always be deaf in my left ear and since doing some more research, I will soon be fitted for a Baha."

Many who have microtia/atresia through the childhood years get picked on, teased and bullied, and they may feel embarrassed. I have a section devoted to bullying that is covered within the Ear Community as well. Our society puts so much of an emphasis on being "perfect" physically. For some people, microtia/atresia may be part of a an associated syndrome with other facial characteristics such as Hemifacial Microsomia, Goldenhar Syndrome, or Treacher Collins. People can be cruel, and it can be very difficult for a family and for the child to be him/herself and feel accepted.

During the first few months after Ally was born, I found myself turning her toward her non-microtic ear for pictures. Eventually, I learned that other parents have experienced feeling this way too. It wasn't that I was ashamed, but I love her so much and didn't want to endure comments from others that would come across as cruel. I realized I was only trying to protect Ally. I also was afraid that someone would make a remark about Ally's ear and think that I must have drank alcohol or took drugs during my pregnancy for that to happen when that wasn't the case. I have learned that sometimes things randomly happen in utero. I'm in a different place now. I think Ally's little ear is beautiful and her ear is part of what makes up her happy little character and cute personality. Ally is beautiful and perfect in every way. It's always been important to me that we raise our children with self-confidence. On Ear Community I have photos of individuals with microtia/atresia, from newborns to children, to celebrities, models, cartoon characters and successful adults. Our message is to love yourself and to not let little ears hold you back. You can be anything you want to be in life. Some individuals even love their little ears and would never change them.

In addition, I would like for families to understand more about the hearing loss and medical aspects. We don't provide medical advice or make suggestions. The website is as completely unbiased as it can possibly be. We show all the products available, provide information about surgical options, and show before and after photos, including prosthetic ears and of course the do-nothing option. No one ever has have to do anything with their ear(s). You can let your child make the decision when they get older or as a parent you can do what you believe is best for your child. No decision is wrong - the right decision is the one that is best for your particular child and your particular family. Along those lines, I don't disclose most of our decisions for Ally, as I don't want our decisions to influence others. I want each family and each individual to make the decisions that are best for them and feel good about the decisions they have made.

SMAKA: You mentioned you have also had feedback from health professionals.

TUMBLIN: Yes. I understand that health and medical professionals cannot possibly specialize in each and every thing that a patient will walk into their office with. I'm not a doctor. However, I want to provide a portal or a window for professionals to see what families are experiencing, and the questions they have. I hope to help them become aware of the options that are available for families, and know where to refer families for more information. I want to provide comprehensive information that is useful to them. I see Ear Community as a partnership where we can all help each other. A community for all to learn from. Professionals can learn a little bit more about patient advocacy for microtia and atresia, and families can learn how to be better advocates for their children. An individual who is older and considering surgery or amplification can obtain information to be their own advocate.

There is such a wealth of information on the site - more than anyone could ever receive in a class or at a conference. In addition to the information we discussed, there is information about financial assistance, accessories, educational information such as IEP and 504 Plans, links to books and other resources, a discussion forum, and more. We have a good search functionality on the site so you can type in what you're looking for to easily find the information and the site is translated in 47 different languages. Ear Community is truly a global website.

SMAKA: Tell me about the Ear Community picnics.

TUMBLIN: The picnics came about with me realizing that there are a lot of families out there that think they're all alone and who would love to meet others in the same situation. Many of our children have never had the chance to meet another child just like them with little ears or crooked smiles. I think it's very important for them to see that they're not alone. I also found many members of my support group trying to connect with each other and have play dates that would not happen or fall through. There is something special about meeting in person so that we can speak with and share experiences with one another.

With doctors and device manufacturers, there are privacy issues and so it is difficult for them to make connections between patients. I decided I wanted to bring people together, and so last summer I said, "Well, I'm going to host a picnic and we'll see who comes." I didn't care if we would have to brownbag it. I thought maybe it would be just my family and no one else will come. It turned out that Oticon Medical stepped in and their Vice President of Marketing, Alan Raffauf, said "Let us please provide the food and make this easy for you" and I said, "Oh, my gosh, thank you," and then Cochlear Americas called the day before our picnic and Brandy Harvey, National Program Manager, said, "Do you have a face-painter?" and I said no, and she said "Well, you have one now." I was absolutely amazed at how the hearing aid industry wanted to help, give back and be a part of the first picnic that I hosted.

And lo and behold, over 100 people came to my picnic last summer, proving to me that all these families want to be together. This summer we expanded to seven picnics in the U.S. and in Canada. We are expecting close to 200 people for our California picnic, and around 150 this year for the 2nd Annual Colorado picnic.

Through our picnics, it's possible that a family will connect with another family in their same city or neighborhood that they didn't know. For example, there are three families with children with microtia/atresia who have recently moved to my area from other states and we happen to live within a three mile radius. We have shared doctors that we go to and audiologist contacts for our kids. Some families may want to have their kids play together so they know there is someone just like them with little ears. Maybe a child will have a bad day at school because of a remark that was made about their ear(s), and maybe they'll remember that they met someone at the picnic and feel a little better knowing that they're not the only one in the same situation.

Since I believe knowing about all of your options, I invite surgeons, ENTs, audiologists, therapists and anaplastologists to all of the picnics I host through Ear Community, not as vendors but to mingle with families, and to answer general questions. I have been fortunate enough to have Cochlear, Oticon Medical and Sophono sponsor my picnics and I have personally asked them to bring their products with them to the picnics to help educate families. I'm trying to bring both worlds together, with a focus on supporting the families and helping promote education and advocacy.

SMAKA: Information about the picnics is on your website, under Upcoming Events.

TUMBLIN: Yes, all the information is there for families to RSVP.

SMAKA: Melissa, I've learned a lot about the families' side of microtia/atresia from you and Ear Community. It's an amazing resource. All the best to you and I look forward to speaking with you again as Ear Community continues to grow. Thank you.

TUMBLIN: Thank you, Carolyn. It's been a pleasure.

For more information, please visit www.EarCommunity.com
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Melissa Tumblin

Founder, Ear Community