Pfeiffer Syndrome is a craniofacial disorder that affects one in every 100,000 people and impacts the way bones grow. Nine-year-old Nova Cox was born with Pfeiffer Syndrome, and in her case her head, neck, and arms have been affected resulting in hearing loss in both ears.
Because hearing loss is common with Pfeiffer Syndrome, her parents Elizabeth (Liz) and Jason connected with other families, utilized Facebook groups for bone conduction wearers, researched online, and consulted their audiologist before Nova was fit with a bone-anchored hearing system (BAHS) on a softband.
That’s a new sound
After wearing a bone-anchored hearing device on a softband for 7.5 years, Nova began advocating for abutment surgery. After doing research with her family, they consulted an audiologist and were able to try on different types of BAHS before her surgery.
“Nova made the decision to have the implant surgery and was able to ask her questions and be a part of the decision-making process. When she learned more about it she advocated for it and we moved forward when she was ready. When she tried on the Ponto, she didn’t want to take it off,” Liz explained.
Nova chose the Ponto bone-anchored hearing system because she experienced less feedback and better sound quality after trying different devices. She had bilateral abutment surgery and was fit with two Ponto 3 SuperPowers. On the day her Pontos were programmed it was raining and her mom recalls she asked, “Does the rain always sound like this?”. Nova’s parents knew they had made the right decision and for the first few weeks of having her Pontos on abutments they liked to play a game called That’s a new sound, where Nova shared new sounds she was experiencing.
Life with Ponto
It’s been a year since Nova’s bilateral abutment surgery. Today, she is a fierce and mighty force of nature advocating for herself, her health, and her life as an active kid.
She says she loves her Ponto BAHS and enjoys using the Oticon Medical Streamer in class and when she’s in the hospital so she can watch movies to pass the time. And like lots of kids her age she likes Legos, Star Wars and Pokemon and spends her free time playing music, soccer, Taekwondo, and watching movies with friends.
Empowered to tell her story
Inspired to share her story especially with young children, Nova created the video below as she was preparing to give a talk in Washington, DC advocating for high-quality accessible healthcare for children.
Advice to others
Nova and her family have learned a lot in just nine years. A few important pieces of advice that they want to share with other families is to try multiple hearing devices in order to find the right solution and make decisions when the time is right for you or your child. As for Nova, she has the best advice — “Judge Less, Love More”.
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