In April of 2014, Max and Melissa Witt gave birth to a beautiful sweet baby boy named Clark. When Clark was born, he was originally diagnosed with having Goldenhar Syndrome and Hemifacial Microsomia. Clark was also born without his left ear due to having Microtia and a missing ear canal due to having Atresia, resulting in hearing loss. Clark’s parents did everything they could to provide him with proper healthcare prenatally. They had level 2 ultrasounds, genetic screenings, even a fetal echocardiogram, etc… However, it wasn’t until Clark was almost 2.5 months old (after birth) when Clark’s doctors discovered that his heart had a double aortic arch. Clark underwent heart surgery at just 5 months of age to fix his heart.
With Clark’s parents focusing on his heart surgery and his recovery in the beginning of his life, Clark’s parents hadn’t had time to consider any potential speech delays or communication impairments because of his unilateral hearing loss. Clark’s mom, Melissa, says that “Clark has always made good eye contact since he was a week old and he has cooed since he was 2 months old. However, his coos haven’t changed (now at 7 months of age).” Melissa noticed when Clark heard sounds that he was looking toward his right (with his better hearing ear) and often looked around in confusion. When Melissa began wondering if Clark was having troubles hearing, she took Clark to an ENT to have him evaluated. Dr. James Thomsen (Pediatric Otolaryngologist) explained how hearing works on the speech banana diagram to Melissa and Max and that there are different frequencies and vowel sounds that may not be heard when there is a hearing loss, such as with unilateral hearing loss. Dr. Thomsen also explained how two ears help us to localize sound and when one ear doesn’t work very well, we can lose the ability to locate where sound is coming from. Max and Melissa realized Clark may be struggling with his hearing loss even though it is a unilateral hearing loss.
At six months of age, Max and Melissa took Clark to an audiologist where he was fitted with a loaner hearing device made by Oticon Medical called the Ponto Pro. Dr. Jennie Allen, Clark’s pediatric audiologist, told Melissa that Clark can wear this hearing device on a soft band head band. Melissa says, “For the first time, I can clap on his left side and he turns to the left side (not his right), noticing where the sound is coming from.” Melissa says, “I have done everything I can to help my son so far, and there is overwhelming evidence that a bone conduction hearing device will help Clark hear better.”
While trying to pay off medical bills from Clark’s heart surgery, Melissa applied for a bone conduction hearing device through their insurance provider, but were denied coverage for a BAHA. Dr. Jennie Allen informed Max and Melissa about a nonprofit organization called Ear Community that helps individuals born with Microtia and Atresia. Max and Melissa applied through Ear Community for a hearing device for Clark.
Melissa Tumblin, Founder and Executive Director of Ear Community, explains that “As a part of Ear Community’s mission to help children and adults born with Microtia and Atresia, one of our goals is to help children like Clark obtain hearing devices when in need.” Ear Community manages multiple support groups online, but one in particular was created to help families and individuals pay it forward and help donate gently used hearing devices to those in need of one. This particular Ear Community support group is called the “Ear Community Gently Used Bone Conduction Hearing Aids,” group. Melissa explains, “this support group gives BAHA users the chance to donate their gently used bone conduction hearing devices to someone who needs one, but cannot afford one. Members with used devices do not sell them on our group, but donate them, helping pay it forward and find a new home for their hearing device.”
One of Ear Community’s support group members, Kristine Siwek, saw a post on our gently used group from Clark’s father looking for a BAHA for his son. With Thanksgiving season upon us and being the time of year to give thanks and to give back to our community, Kristine realized this was a wonderful opportunity for her to help give back and help little Clark hear better. After discovering that baby Clark’s hearing loss was in his left ear as well, Kristine knew this was meant to be. Kristine had perfect hearing until she turned 29 years old when she went deaf in her left ear as a result of a brain tumor (acoustic neuroma). Kristine says, “Until then, perfect hearing was something that I took for granted. I realize now, how lucky I am to have gone through schooling and the various sports I played without a hearing or balance deficit. It is one of the reasons why I feel so passionate about making sure children receive the support they need to develop, grow and thrive.” Knowing how a BAHA has helped Kristine regain her hearing, she understands the benefits of how her Oticon Medical Ponto Pro has helped her hear again with a unilateral hearing loss. Kristine explains, “As a mom of 3 toddlers, I know firsthand that I would do anything to help make my children’s lives easier, healthier and brighter. I am overjoyed to be able to help another family’s mission to do just that for their sweet baby boy! I am truly humbled by the endless support I have received the past four years since my hearing loss and I feel so honored to donate my Ponto Pro to Clark through Ear Community and give back to a community that can help a child hear better.”
When Max and Melissa discovered that Kristine wanted to donate her hearing device to Clark so he can hear better, they were overjoyed as well! Clark’s mother Melissa says “The Ponto Pro is the same model Clark has on loan from the ENT! He has had it for maybe 3 weeks on a one month trial basis and is responding so well. I hate the thought of taking it away from him. It’s just been a long year regarding medical expenses. This is amazing and perfect timing. Goldenhar syndrome affects so many systems, and the past 7 months have been full of expensive doctor appointments/surgeries and a lot of bad news. However, this gift has given much relief and provides optimism for us. We are so thankful for Kristine’s donated BAHA for Clark!”
When Oticon Medical found out about Kristine wanting to pay it forward by donating her BAHA to baby Clark, the organization wanted to make sure Clark had everything he needed. So, Oticon Medical donated a welcome package and care package for Clark with lots of BAHA accessories included.
“This is the true meaning of the Thanksgiving holiday,” says Melissa Tumblin. “It is the wonderful feeling of wanting to give back and pay it forward. The wanting to help others within our community and experiencing the good and thanks as a result of what we have done that has helped someone.” “This is what Ear Community’s mission is all about and we couldn’t be happier to be a part of these amazing experiences that happen through our foundation,” says Melissa Tumblin. A very special thank you to Kristine Siwek for finding a new home for her BAHA so that it could help Clark hear better! A very special thank you to Alan Raffauf, Oticon Medical’s Vice President of Marketing in the US, for donating the care package of accessories for Clark so that he has everything he needs. And….thank you very much to Max and Melissa Witt for being a part of our Ear Community Gently Used Bone Conduction Hearing Devices group, helping them find what they needed for Clark.
“All of us here at Ear Community are so very happy for Clark and Kristine during this Thanksgiving holiday and thankful that we were able to connect these two wonderful families so that they could receive the help they needed with the help of Oticon Medical,” stated Melissa Tumblin.
Here is the link to our Ear Community “Gently Used Bone Conduction Hearing Devices” group on Facebook: https://www.facebook.com/groups/EarCommunityDonatedHearingDevices/
Here is also the link to our primary Ear Community support group for Microtia and Atresia loved ones: https://www.facebook.com/pages/Microtia-and-Atresia-Support-Group/118851728152174
Happy Thanksgiving from all of us here at Ear Community and we are so happy for baby Clark! Ear Community is a 501c3 nonprofit charity organization that helps Microtia and Atresia families all over the world. Tax ID#: 84-1246756
Thank you always,
Founder and Executive Director of Ear Community