Natalie, age 7, and Julia, age 5, are sisters and best friends. Their creative imaginations run wild every day — when they play together, during bath time and at bedtime — even though they can’t really hear each other.
Born two years apart, their hearing journeys have been similar. Both girls were born with Pendred syndrome, a genetic disorder that can cause early hearing loss in children. They both began experiencing sloping hearing loss that progressively got worse over time. And, they both received their first set of hearing aids at just three months old.
When Natalie was 22 months old, she received her first cochlear implant, which is a great solution for children with hearing loss whose hearing aids are no longer effective. At that time, our family lived in Colorado. Shortly after, we relocated to Arizona. That was when we first brought Natalie to Phoenix Children’s to meet with their cochlear implant team, which includes pediatric otolaryngologists, audiologists, a psychologist and a speech-language pathologist who specialize in caring for children with hearing loss. It was at Phoenix Children’s that Natalie received her second implant at the age of 5 years old.
Although her sister, Julia, was born with slightly better hearing, our family knew that Julia would benefit from implants as well. Having an older sister with implants made Julia’s decision to get her first implant very easy. She received her first implant just before her fourth birthday and nine months later received her second implant.
Our hearing journey with both girls, with hearing aids and implants, hasn’t been a walk in the park, but we have all worked really hard to make it as smooth of a ride as possible. Having experienced hearing loss, hearing aids, cochlear implants and improvement in hearing levels together has further strengthened the already strong bond our girls share.
We have also had the opportunity to work closely with amazing surgeons and knowledgeable audiologists at Phoenix Children’s. We enjoy our regular visits and they do all they can to help our girls continue to progress.
Natalie is now in the second grade and loves school! Her teacher uses a microphone so that everyone in the classroom can hear well. For other classes, teachers wear an FM system to help the audible level above any background noise. Natalie also enjoys dance class, gymnastics, basketball and baseball. Many times, we hear her singing an original song while working on her latest art creation. Her dream is to be a fashion designer when she grows up.
Julia attends kindergarten where her teacher also uses an FM microphone, which helps Julia hear instruction over the classroom noise. Julia loves to read, play with her sisters and dogs, dance, sing, and play at the park. If life were on her terms, she would buy every single stuffed animal she sees and dreams to be a vet or zookeeper when she grows up.
Our girls’ hearing loss is a part of their identity, but it does not define them. They love to decorate their implants with stickers and show them off. They are very open to sharing with friends and anyone else they meet what their implants are all about and how they work. Their hearing loss has changed our family’s life for the better by bringing us into a new community of people we love and are grateful to be a part of.