My Child is Eligible for a Cochlear Implant …. Now What?

If your child has a severe to profound or profound sensorineural hearing loss, you've likely already heard quite a bit about cochlear implants from your audiologist. While I can't offer you groundbreaking information about cochlear implants, I can hopefully connect you with the right resources and offer a glimpse of the cochlear implant journey.

To get started, please go here to learn more about WHAT a cochlear implant is and how it works, especially how it's different from a hearing aid. Cochlear implants and hearing aids not only look different, they also work in very different ways. Pictured below on the left is a young girl wearing a hearing aid that has a clear ear mold and a black behind-the-ear processor. Pictured to the right is a young boy with a light beige cochlear implant magnet, cable, and processor. He also has black retention clips to prevent losing his devices.

Next, it's important to know that there are three different cochlear implant companies, although you'll have to check with your audiologist to confirm which companies he or she works with, as well as which devices your surgeon implants. Resources for Med-El implants for children can be found here. Advanced Bionic resources for children are here. And Cochlear's children's resources are here.

If you are contemplating a cochlear implant for your child, there are many factors to consider. Your audiologist will share specific details for you and your child. You can also refer to the FDA's website for additional cochlear implant information. Ask plenty of questions as you go through the process. Speaking with a family who has already gone through the process can be a huge source of support and make a world of difference for you. If you can, work with a Parent Guide through Hands and Voices, alternatively take a look at Valli Gideons experiences here and a few other parent experiences at Hearing Like Me.

When I'm working with families as they progress from diagnosis to receiving cochlear implants, many are surprised that.....

Approximate Timeline of What to Expect When Choosing Cochlear Implants for Your Child:

· A Hearing Aid Trial - This lasts 3-6 months and confirms hearing aids alone aren't enough amplification for your child to hear speech sounds.

· An MRI and/or CT – Your cochlear implant surgeon uses these images to check for the presence of an auditory nerve and an intact cochlea (not too bony) with enough turns for the electrode to be placed.

· Multiple Audiology Appointments - Your audiologist will need to see how your child does in the sound booth without hearing aids, as well as with hearing aids.

· Phone Calls - You can safely expect to make many phone calls while working through the cochlear implant candidacy process. Calls to schedule appointments, but especially calls to review and negotiate private insurance and Medicaid coverage.

· Vaccinations - Your child will need to be up-to-date on his or her vaccines prior to surgery.

· Surgery - The procedure to implant the electrode array is often completed at an outpatient facility. You’ll need to arrive early in the morning, but should be back home later that day. As with any surgery, there are risks to consider. Keep in mind, coming out of anesthesia may be difficult for your child. Also know that the cochlear implant is placed on surgery day, but it is not yet “turned on”.

· Post-Op Appointment - Your surgeon will inspect the implant site, about one week following the procedure.

· Activation Date - About 3-4 weeks after surgery, you'll meet with your audiologist to turn on the cochlear implant external processor and program it (called mapping). This appointment is long, anywhere from 1-3 hours, and only one side will be activated at this time. Usually activation for the other side takes place one week later. (Have you seen those viral videos of a child's reaction to sound for the first time? Just a heads up, that is not the norm, reactions vary.) Go into your appointment with realistic expectations. Your child may or may not have a strong reaction. Some children cry, some smile, and many others simply look around, possibly widening their eyes.

· More Appointments - Suffice it to say, the appointments seem to never end! You'll likely meet with your audiologist every 3-6 weeks while continuing to map your child's implant. Moving forward, you'll see your audiologist once a year for adjustments and as needed in between for repairs. It's also recommended your child receive weekly speech therapy and aural habilitation (what I do) to help your child learn to use their implant. Keep in mind, it's important to be consistent and timely with appointments, therapies, and using strategies at home. Putting in the work now will help ensure your child is set up to use their cochlear implant effectively for years to come.

We could talk about cochlear implants all day! But for families just beginning their CI journey, this is a good start. What has your experience been with cochlear implants? What am I missing that would have been helpful as you were going through the early days of learning about cochlear implants?