When a child is unexpectedly diagnosed with hearing loss it can be an overwhelming experience. After the initial shock, however, many take comfort in knowing there are a variety of options to communicate with the child and help your child communicate with the world. One option for profound hearing loss is cochlear implants.
When my son was one month old, he was diagnosed with a profound hearing loss. The answer to our prayers was early cochlear implantation, but we had to fight for it.
Hearing Loss Diagnosis
Our early cochlear implantation journey began when Parker was a month old. I remember sitting in the ENT doctor’s office, holding Parker in my arms when the doctor came in and said five words that changed everything. “Parker has profound bilateral sensorineural hearing loss.”
What came next was a seemingly endless number of appointments following his diagnosis. I learned that fancy medical term meant precisely what I was dreading to hear.
My son was born deaf.
At first, I felt lost. I felt confused, and honestly, I felt hopeless. I didn’t know how to make sense of this situation that was entirely out of my control. It was heart-wrenching to face the realization that my baby would have more challenges in his life to overcome than I ever did. The flood of emotions was endless – from anger to sadness to guilt. I felt them all closely and painfully.
Early Cochlear Implantation
When I first learned about cochlear implants, they became the light at the end of the tunnel for my family. They were the hope that we had been waiting for, but there seemed to be one massive roadblock in the way: time.
Read more: Cochlear implants
At that time, the FDA recommended a child wait until 12 months of age before receiving cochlear implant surgery, a recommendation that carried over to insurance companies, hospitals, and hearing professionals. At the time, Parker was just over one month old. Waiting almost another year seemed unfathomable to me. It was out of the question that my son would need to wait that long to hear our voices and start to make memories through sound. After all, a child’s first three years of life are the most critical when it comes to brain development. It’s when they can best absorb language.
So, I got to work.
And by that I mean that I essentially promoted myself to CEO and founder of “Mission Early Implants” so that Parker could be implanted as soon as possible. I spent hours researching and learning everything I could about cochlear implants. I discovered that the recommendation of implantation at one year by the FDA is a general guideline, not a rule. However, the way most hospitals and insurance companies abide by that guideline, you would think early implantation was a hard and fast rule. So let’s be clear – receiving implants earlier than 12 months is NOT illegal. It is an accepted practice, assuming the surgeon has documented reasoning, sound logic behind the “off label” implantation, and the parent gives informed consent.
Cochlear implant surgery is “off-label” anytime the implant patient doesn’t meet all the FDA’s labeling requirements, like being at least nine months of age. A 2018 study by the Mayo Clinic found that 78 percent of respondents performed cochlear implantation for expanded indications outside current FDA labeling.
After a lot of investigating, a few dead-end roads, some necessary pivots, and refusing to take “no” for an answer, Parker received his cochlear implants at six months.
I learned more than I could have ever imagined during this journey, and I’m excited to share these five steps that made early cochlear implantation possible.
1. Use the Feed and Sleep Method
It’s required that your child undergo either an MRI or CT scan to evaluate their middle and inner ear structures before surgery. Typically, this requires babies to be under anesthesia so they’re able to stay completely still for 30-60 minutes.
The problem was that doctors wanted Parker to wait until he was six months before going under anesthesia. This would move his surgery timeline back by several months. The good news is that there’s a little known alternative that negated the need for anesthesia. It’s called the feed and sleep method, and it worked for us!
Here is how it works. On the day of Parker’s MRI, we kept him awake for as long as possible, so he was beyond exhausted. Then, right before the MRI, we fed him a bunch of milk, and finally let him sleep. Using this simple step, we checked this procedure off the list at four months. This significantly accelerated our implantation timeline.
2. Start the Clock Early
Before your child can receive cochlear implants, they must first undergo a three to six month hearing aid trial. During this trial, your child’s audiologist must prove that they receive limited benefit from their hearing aids before referring them as a candidate for cochlear implants.
With Parker, the most critical takeaway we learned was that the clock starts ticking the first day you put hearing aids on your child.
Often, parents wait until they get their children custom hearing aids to start the process, which takes time. I recommend looking into programs and hospitals that offer loaner hearing aids. It doesn’t matter if your child uses a loaner or a custom ordered pair. They just have to be fitted appropriately and set up to start the clock.
If you can get a pair of loaners, start there and get the clock started! You can still order hearing aids for your child. This way, your timeline won’t be delayed by a month or more depending on processing time, insurance approvals, etc.
3. Stay on Top of Insurance
Undoubtedly this will be the most challenging part of the process, where you can count on there being hangups. This is why it’s critical to be proactive and stay on top of the insurance process.
To avoid insurance delays, we made all paperwork a priority, checking for accuracy on every form. We also checked in often with our provider and insurance to confirm there were no issues that might impact our timeline. Towards the end of the process, my husband spent 12 hours total on the phone with insurance to get Parker’s surgery approved.
Insurance can get tricky. So instead of succumbing to its intimidation and pushing it off, it is best to face it head on by continuing to push through the confusion. Ask questions until you understand everything. Call for frequent check-ins until you are 100 percent sure that you have completed everything you need to remain on schedule for your scheduled surgery date.
4. Communicate with Pre-Implant Team
A team of hearing specialists will complete a pre-implant evaluation to assess your child’s candidacy for cochlear implants.
This team (at a minimum) will consist of an audiologist, ENT surgeon, and a speech-language pathologist. Each person plays an essential part in assessing your child’s candidacy for cochlear implants and determining the implantation timeline.
As a parent, it’s critical to communicate with your team of experts and professionals, figure out their role in the process, and what they’re looking to evaluate. Ask questions like what tests/diagnostics need to be completed? What does that timeline look like? Keep every line of communication open.
If your goal is to implant your child as early as possible, this is a topic you need to discuss with every member of your pre-implant team. The pre-implant evaluation has many moving parts. The entire team needs to be in alignment. If any delays occur, be sure to check in with your team to understand how this might impact the surgery date. It’s important to also remember that not all cochlear implant surgery centers or surgeons will implant your child early.
“How you handle the mental aspect of this journey will determine your level of success.”
5. Understand that Roadblocks are Inevitable
How you handle the mental aspect of this journey will determine your level of success.
You will be told “no” many times throughout this process. Stay strong, ask “why,” and redirect your steps from there. When you face a roadblock or turning point, don’t be afraid to ask questions. There are no stupid questions. You might feel like there are. But if you ask questions to understand the whys, more options and opportunities will present themselves.
Throughout this process, we were told “no” more times than we could count. If we had just listened and not pushed back, our early implantation journey would have ended right then and there.
Your child’s hearing loss journey
If the answer doesn’t make sense, do some digging. Throughout this journey, people will say things that imply there’s no flexibility in the process. This is why it’s critically important to know enough to ask the right questions. No matter what, don’t be afraid to ask for further explanations.
It’s been a long road with many bumps along the way, but we wouldn’t have had it any other way. Parker’s surgery went off without a hitch, and he successfully received his implants at six months.
This is our story. It’s been hard, but it’s been beautiful. I hope that hearing our story has been helpful and answers some questions. Know that everyone is on their own journey, and each story will look different. So whenever it happens and however it happens, you’ve got this!!
Ashley Hummel is a mompreneur and the Founder of SyNAPS, a functional headwear company for toddlers with cochlear implants. Her mission is to help parents secure their child’s speech processors, allowing for uninterrupted access to sound during this critical period of brain development in a child’s life. To learn more about SyNAPS products and to follow their journey to launch, visit synaps.shop or find them on Facebook or Instagram.
The HearingLikeMe editorial team includes Jill Blocker von Bueren and Lisa Goldstein.