Heidi and Rosalee’s journey to an ear with the Ear Community Organization

Heidi and Tom Jeffs with their daughter, Rosalee, presenting about the Ear Community Organization and sharing their journey to a prosthetic ear at a Microtia and Atresia symposium for families hosted by Dr. Russell Griffiths

In the early days of 2012, I knew nothing about Microtia and Atresia.  The day my daughter, Rosalee, was born changed all of that.  Rosalee was born via c-section.  After she was born, my husband went with the nurses to check her, count fingers and toes, all the things.  It was then that they noticed she was missing something – a left ear.  I was still on the operating table when my sweet husband brought Rosalee all bundled up to show me her beautiful face.  He didn’t want me to know about her little ear while the doctors were still stitching me up – so he said nothing about it.  She was then whisked off to the NICU and he followed.  A little while later, I was in the recovery room with a nurse telling me to “take deep breaths” because my oxygen stats were dropping.  A nurse abruptly walked in and announced to me, “so your daughter doesn’t have an ear on one side.”……and then she left.

A baby being born is a big deal in and of itself.  When something happens that isn’t anticipated, it can be earth shattering.  So many thoughts raced through my mind in those early days of Rosalee’s life.  Would she be able to appreciate music the way I do?  Will she struggle in school?  Will kids make fun of her?  How will we as her parents handle all of that, and how will we help her in the most beneficial way?  We were so blessed to have been referred to a pediatric plastic surgeon when Rosalee was four months old.  Dr. Russell Griffiths answered all of our questions, and gently explained the options that were available to us.  It was at that time he also shared with us about Ear Community.  That appointment changed our lives forever, and shifted our journey to one of education, hope, and peace.

I have been fortunate to be a part of Ear Community for a little over six years.  Because of Ear Community, I have made friends all over the world who have children with little ears just like my Rosalee.  Because of Ear Community, I became a parent-expert on Microtia and Atresia in days; surpassing our pediatrician and early intervention team as far as the depth of knowledge I gained through the website.  Because of Ear Community, I have been a part of supporting college students further their educational journey.  Because of Ear Community, I have been a part of changing lives around the world through the donation of bone conduction devices.  I have found a true friend in Melissa Tumblin, who is one of the best humans I have had the fortune of knowing.

Through my journey with Ear Community, I found myself being invited by Dr. Russell Griffiths to talk at his recent Microtia Symposium in Boise, Idaho.  Dr. Griffiths has been a long-time supporter of Ear Community, and we are so grateful for his donations to our organization.  As a parent-advocate, I have a unique perspective in the journey we have taken with Rosalee.  I was able to share how we have taken Rosalee’s lead on what she wants to do about her little ear – our philosophy is that it is her body and she should get a say in what happens as far as surgery goes.  A few years ago she wanted to get a ‘big ear’ but definitely did not want surgery.  I was able to share at the symposium about our experiences with Paul Tanner, an anaplastologist in Salt Lake City who creates prosthetic ears through 3-D printing.

I was fortunate to connect with families in my neck of the woods, as well as from all over the country – there was even a family that had traveled all the way from New Jersey!  I am grateful for the opportunity to share about our journey, about the treasure of information that Ear Community is, and have a special day with other Microtia families.  I must say, Rosalee’s prosthetic ear was a big hit – many families wanted to come and look at it and handle it!  I consider myself so fortunate to be a part of an organization like Ear Community that educates families on all of the options available in a truly unbiased manner.

Thank you to Dr. Griffiths and his team for inviting us out, and allowing me some time to share about Ear Community.  Thank you to Star and Angie for working out any kinks and answering all of my questions.  Thank you to Melissa Tumblin for creating Ear Community and changing my life and my daughter’s life.  Parent and Patient advocates can be such a force for good, and I hope to be able to continue my work in helping other families who are new to this journey.  We are all in this together, we don’t always have the answers, but we are never alone in this path.
– Heidi Jeffs
Events Manager
Ear Community