Just a day after his birth, Nakoa’s family received the unexpected news that he had failed his newborn hearing screening. This was only the beginning of a challenging yet transformative journey.
Two weeks later, the family returned to their local hospital for a second screening. The results were the same: Nakoa failed. The hospital referred them to another pediatric hospital for more comprehensive testing. Nakoa failed every test, and the diagnosis of profound deafness was becoming increasingly clear. The family was devastated but determined to seek a second opinion. So, they were referred to Nemours Children’s Hospital, Florida, a renowned pediatric healthcare facility, for the following week. Still, Nakoa failed every test, and the diagnosis was confirmed.
For his mother, the diagnosis of profound deafness held a heavy impact. “I mourned the thought of him being deaf and having to endure being different,” she shares. The fear of Nakoa facing cruelty from others weighed on her. The prospect of him having to wear cochlear implants, devices that would make him stand out, was a source of deep concern. “It was a tough few months,” she shares. But, despite the diagnosis, Nakoa was a content and well-behaved baby, often sleeping through the night and thriving in his own way.
Visiting Nemours Children’s, Nakoa’s family was met with a level of care and expertise that surpassed their expectations. “The doctors were very caring, knowledgeable, and made me feel comfortable,” says Nakoa’s mom. Despite her initial hesitations, the team at Nemours, led by Dr. Cedric Pritchett, provided a level of support that was both reassuring and deeply personal. One evening, after a particularly emotional day, Dr. Pritchett called Nakoa’s mom at 8 PM, staying on the phone with her as she cried, answering all her questions and concerns. “No one was pushy, and they all made me feel heard and my feelings validated,” says Nakoa’s mom.
The decision to proceed with cochlear implant surgery was a pivotal moment in Nakoa’s life. In 2022, at just 9 months old, Nakoa underwent bilateral cochlear implant surgery. The first night after surgery was the toughest for Nakoa and his family. The hospital kept him under observation as he adjusted to the changes in his body. However, by the next morning, he was already acting like his usual self.
A few weeks after the surgery, the moment they had been waiting for arrived: the activation of Nakoa’s cochlear implants. “While he wasn’t hearing and understanding right away within the year he was talking and understanding so much,” says his mom. “Now at 3 years old, he’s right with all the other kids if not a bit more advanced in speech.”
Nakoa’s mother is optimistic about his future and his education. “I plan to mainstream him through school,” she says. “He has been in preschool this past year and is flourishing.” Nakoa’s mother sees his use of cochlear implant processors as a natural part of his daily life. “Honestly, I don’t see it as anything different than regular life. He wears his processors to hear, and others hear with their ears—that’s the only difference,” she explains.
As Nakoa continues to grow and develop, his family remains committed to providing him with the tools and opportunities he needs to thrive. They are working closely with his care team, including speech language pathologist, Megan Nelson, to ensure that he receives the best possible support.
As Nakoa’s mom reflects on their journey, she offers heartfelt advice and encouragement to other families facing similar challenges. “It sounds scarier than it is,” she shares. “Our kids are resilient, and they will overcome any obstacle in front of them. I am happy I have given him the opportunity as early as I did, and I would say don’t hesitate to get the surgery sooner than later. Fighting my insurance to allow it prior to 1 year was huge to him and his hearing journey. I was worried how the other kids would treat him and/or mess with his processors, but no one ever does. Kids ask questions but it is more about them getting educated on cochlear implants and not about Nakoa. When I tell them they usually say ‘oh’ and that’s the end of it. You don’t treat people any different who wear glasses so why treat someone who wears processors different? Don’t! He doesn’t need special classes or a specific group of friends. I don’t think of his deafness as a disability, its honestly his gift because if at any time he wants to take a break from the world he can take his processors off and turn it all off. He is a smart, funny and brave little boy. He loves to ride his dirt bike, eat and play with his brothers.”
By embracing early intervention, working with expert care teams, and celebrating his unique gifts, Nakoa and his family are thriving.
