Ponto Wearer Kris Siwek Gives— and Gets— the Ultimate Gift
Kris Siwek is a Ponto wearer and advocate that we know well. Kris suddenly lost her hearing after being diagnosed with a tumor at age 29. Kris, pregnant at the time, did intense research to find the best solution for her survival and recovery— from her acoustic neuroma removal to finding the right hearing solution. Kris actively shares her story and advocates for those with acoustic neuromas and hearing loss.
When we spoke with Kris last week, we could see her face light up when she mentioned her donated Ponto would go to a 7-month-old through Ear Community. Heres’ more about that 7-month-old, Clark. As Kris put it, “It’s just so perfect.”
“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,” Melissa Tumblin, Founder of Ear Community writes in the original piece about the story on Ear Community. “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… 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, they didn’t consider potential speech delays or communication impairments. But Melissa, Clark’s mother, noticed that when Clark heard sounds, he looked toward his right with his better hearing ear. She took Clark to an ENT for evaluation.
Pediatric Otolaryngologist Dr. James Thomsen explained 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 explained that two ears help us to localize sound and when one doesn’t work 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 Tumblin explained.
Clark’s mother Melissa said that the difference was noticeable right away. “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. 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 working to pay off medical bills from Clark’s heart surgery, Melissa applied for a bone conduction hearing system through their insurance provider but was denied coverage. Dr. Jennie Allen told Max and Melissa about the nonprofit organization Ear Community that helps individuals born with Microtia and Atresia. Max and Melissa applied for a hearing device for Clark.
“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,” explained Melissa Tumblin, Founder and Executive Director of Ear Community.
Ear Community has multiple support groups online and one in particular was created to help families and individuals pay it forward and help donate gently used hearing devices to those in need–Ear Community Gently Used Bone Conduction Hearing Aids group. “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,” Melissa said.
Kris Siwek who happens to be a member of the group, she saw a post from Clark’s father. A mom of three young children herself, Kris realized this was a wonderful opportunity to help. After discovering that baby Clark’s hearing loss was in his left ear as well, she knew this was meant to be.
Kris describes the experience of suddenly losing her own hearing, “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.”
“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 Kris wanted to donate her hearing device to Clark, they were overjoyed. Clark’s mother Melissa said, “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 and 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 BAHS for Clark!”
“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.”
A special thank you to Melissa Tumbin and Ear Community for their incredible work in connecting families, and for originally sharing this story. You can find Ear Community’s primary support group here.
If you’re interested in learning more about getting a Ponto for your child click here to learn more. You can also contact the Oticon Medical team if you’re looking to speak to someone about Bone Anchored Hearing Systems today.