Technology meets support: one family's cochlear implant success story
Getting the news that your child has hearing loss can turn a parent’s world upside down. The initial shock can turn into grief over the loss of the life you had envisioned for your child. Questions are sure to follow: What do I do now? Where do I turn? How can I make sure my child can continue to learn and grow?
The choices made in the months and years following a diagnosis can have a significant effect on both the child and the family. For parents of a child with hearing loss, one of those decisions might be surgery for cochlear implants. It is not an easy decision; the amount of information to sift through from multiple sources can be overwhelming. Just a few short years ago, an online resource that brought all of the information together did not exist, but now thanks to a company called Cochlear, that has changed.
Cochlear introduced IWantYoutoHear.com in the spring of 2016 to offer parents and caregivers seeking answers about cochlear implants or beginning their journey into the cochlear implant process the information they need to make informed decisions. Most importantly, IWantYoutoHear.com offers ongoing support for Cochlear families not just in the beginning of their journey, but throughout a child’s life.
Jennifer Hoffner of St. Louis Missouri can attest to the value of a strong support network when it comes to a child’s hearing loss. After failing his newborn hearing screening twice, her son Patrick was just two weeks old when he was diagnosed with profound bilateral sensorineural hearing loss.
Although Patrick was fitted with hearing aids when he was just three months old, they didn’t meet his needs; Patrick still wasn’t hearing all of the sounds he needed for language development. Because cochlear implants are only approved by the FDA for those aged 1 year and older, Patrick had cochlear implant surgery the week of his first birthday.
Fast forward a few years: Patrick is now 7 and going into second grade. He plays baseball year round, swims and enjoys riding bikes with neighborhood friends. Even better, he is excelling in school. He attends a regular local elementary school four days of the week, and on the fifth day, he participated in a gifted program at another school. He’s in the 99th percentile for reading, several grade levels ahead, which makes his mother chuckle. “It’s kind of ironic that someone who started off so far behind has surpassed his peers in terms of language development,” she says.
Patti Trautwein, AuD, Vice President of Marketing and Product Management at Cochlear Americas, the maker of Patrick’s cochlear implants, confirms that cochlear implants can make all the difference in the outcomes of children with hearing loss. “We have seen impressive outcomes in children with cochlear implants and today many are participating in classrooms alongside their hearing peers,” she said. “That said, children with cochlear implants still have a hearing loss. An individualized education plan, or IEP, is routinely used to address the child’s unique needs in the academic setting. Classrooms are typically noisy places therefore an FM system is often recommended. The Nucleus sound processors are compatible with FM systems either through an integrated or remote receiver.”
As a result of his cochlear implants, Patrick doesn’t use sign language; however last year he used an FM system in the classroom and plans to use it again this school year. The school he attends also has a sound-field system installed in each classroom, which Patrick has used successfully.
As with all children, a new school year brings a certain amount of uncertainty. Fortunately, the Hoffners feel confident based on what they have done in past years. At the end of every school year, Patrick's IEP is developed for the following year. Right before the new school year starts, Patrick’s parents and teachers meet to go over his equipment needs, his hearing loss and how cochlear implants work. Covering all of the bases ahead of time means Patrick and his teachers are ready to start the school year without any distractions or confusion.
And, for the past two years, Jennifer and Patrick’s teacher of the deaf have gone into the classroom at the beginning of the school year armed with coloring books supplied by Cochlear Americas. They talk about hearing loss and cochlear implants to the kids. Jennifer says the kids are interested, curious and, most of all, accepting. “It’s music to a mom’s heart," says Jennifer.
A strong support network
One key to a successful cochlear implant experience is a strong support network, something the Hoffners were able to begin developing right away. It started with their hearing professional, audiologist Dr. Jacqueline Rowley, whom Patrick began seeing when he was just two weeks old, and expanded to include Patrick’s surgeon, the staff at his school and the Cochlear Family. After moving to St. Louis when Patrick was 2 so he could attend an oral-deaf school, the Hoffners were reluctant to give up seeing Dr. Rowley. “Everything was going so well,” Jennifer recalls, “I was thinking, what’s going to happen? If you take one of those components out, are the wheels going to fall off?” So, until just this past year, the family traveled to Colorado to see Dr. Rowley for mappings.
Throughout the entire cochlear implant journey, your family's support network will gradually expand to include many caring professionals. This team includes your audiologist, your cochlear implant surgeon, a speech-language pathologist, teachers, and advocates for the deaf within the school system to make sure your child’s needs are met. Dr. Trautwein also recommends doing your homework to find the most comprehensive implant center possible. “Finding a full service, experienced cochlear implant center that works well with you and your child is key," she says. “As a clinician myself, I am simply amazed by the advances in technology over the years and how well children are doing with the technology.”
Despite their initial reservations about the move, the Hoffners have now assembled a great support team in St. Louis. Cochlear America is a big part of that. “Cochlear’s tagline is ‘Hear Now. And Always,’ and to us that really rings true. They’ve always been at the forefront of new technology and upgrades,” notes Jennifer. "After upgrading from the Nucleus 5 implant to the Nucleus 6, for example, Patrick has access to wireless accessories and the Aqua+ , a waterproof silicone sleeve that allows him to swim with his processors. The background noise suppression and wind noise suppression is also a tremendous advantage. We always laugh because there are times he can hear better than we can, like in windy environments or on airplanes; he can actually hear conversations better than us sometimes!” says Jennifer.
That the Hoffners have had such a positive experience with Cochlear comes as no surprise, as Cochlear has extraordinarily high standards when it comes to the community they serve. “Cochlear has always been dedicated to providing families the latest innovations and support to help children hear, learn and achieve,” says Dr. Trautwein.
The Cochlear Family
After the Hoffner’s move to St. Louis they didn’t know anyone at first, but then met people in the volunteer group for Cochlear. Since then the Hoffner family has become active in the “Cochlear Family” and are active volunteers themselves. Cochlear Family is a program that provides personalized education and support to those with cochlear implants. “Patrick goes into meetings and it’s like he has 25 grandparents, says Jennifer. “He knows adults and other children with cochlear implants. It’s just such a warm and welcoming environment, and such a support network of cochlear recipients that we have built up here.”
Trautwein says, “Cochlear Family provides parents and children 24/7 access to information, education and rehabilitation online. The information is personalized to their child. It is a great way to ensure that children and their families get the support they need. And if there is a problem that Cochlear’s service team is there to help them.”
“When we were looking for information on cochlear implants almost eight years ago, there wasn’t much out there,” reports Jennifer. ”Now Cochlear has all of the resources and information on IWantYoutoHear.com.” Reflecting back on the beginning of their journey, Jennifer says, “It is really overwhelming when you find out a child has hearing loss. Kind of like a grieving process. You sometimes get so overwhelmed that it’s hard to process all of the information from many different places. But Cochlear has been great about asking parents, ‘what kind of information did you wish you had then?’ and then incorporating that into the site.”
Realizing speech and language development on par with their hearing peers is the ultimate goal, IWantYoutoHear.com also offers Cochlear’s Communication Corner. The customizable online programs provide families with education and rehabilitation tools to help with speech, listening skills and language development.
The combination of early intervention and the tremendous support of Cochlear has allowed Patrick to soar beyond the Hoffner’s wildest dreams. When asked what advice she would give to another family in the same situation, Jennifer says this: “I know what worked well for our family. If you’re implanted early, it’s possible to excel. Go with your gut. But if you’re going to do it, do it as soon as you can. I don’t know anyone who has regretted it.”
If you are considering cochlear implants for your child, don’t wait. Visit IWantYoutoHear.com and see your child's hearing care professional for more information.