Hello! My name is Kaila, and my husband Zach and I are first time parents to our sweet 9 month old daughter, Harper.
My husband and I were ecstatic to find out we were pregnant shortly after getting married in 2018 and deciding to start growing our family! Minus the late night bathroom breaks and carrying a box of tums everywhere I went, I was blessed with an easy and very enjoyable pregnancy.
After being induced, reality set in that labor was going to be no joke! I ended up having an emergency Caesarian section, which landed our daughter in the NICU for a few days monitoring an infection they believed I contracted after my water broke.
Prior to leaving the hospital, we were informed that Harper failed her newborn hearing screen. Like so many families who are going through this journey, they told us not to worry and they could physically see vernix in her ears (the nice white layer your baby is covered in when you give birth), and that it was probably fluid that hasn’t had a chance to clear out of her ears yet. We made an appointment to come back to the hospital in two weeks to re-do her hearing screen, and we headed home.
Two weeks later, we came back to the hospital and got to sit-in and hold Harper while they performed the hearing screen again, and again, and once more for good measure. We watched as she failed all three screens. It was then that the worry started setting in.
After being referred to an audiologist, we completed her ABR (Auditory Brain Response Test), which determined that Harper has bilateral profound hearing loss. This means she did not have any response to the highest possible decibel and frequency that the test could read. Our daughter was profoundly deaf.
The first two emotions I remember feeling are frustration and disbelief. Disbelief that something like this could happen to MY baby, and frustrated that there was nothing we could do as her parents to change her diagnosis.
After much research, we decided that cochlear implants were the best decision for our family. We were ready to commit as parents to do whatever it takes to make sure Harper has an opportunity to thrive and have access to as many modes of communications that she can. She is currently wearing hearing aids to help stimulate her auditory nerves prior to her bilateral implant surgery. Hearing aids only help amplify sounds your ears are capable of hearing, and since Harper has sensoneurial loss due to genetics, we know she’s not getting much access to sound. We cannot wait to see her reaction on her activation date this summer!
My husband and I recently found out that we both carry a variant of connexin 26, which is one of the most common types of gene mutation to cause non-syndromic hearing loss (this means no other medical issues should accompany her hearing loss), and that we have a 25% chance of having another deaf child.
I could write a book on the amount of advice I could give on anyone just starting off on this journey, even being so new to it ourselves. But here are my top pieces of advice:
1. Let yourself feel and work through your emotions, and know that whatever you’re feeling is healthy, normal, and okay! Whether your initial reaction is frustration, anger, shame - it does not mean you love your child any less. Your feelings will come and go, but I promise they won’t last forever.
2. Knowledge is power. Regardless of whatever mode of communication you choose for your child, becoming as informed as possible about hearing loss, your options, and what would work best for your family. There is no right or wrong decision. My husband and I drove home after we got Harpers diagnosis, got onto YouTube and watched hours of videos about cochlear implants and deaf culture. We cried, laughed, and felt a lot of hope. We felt more in control and educated on what we could do as parents to make sure we could be prepared as possible for what was to come.
3. Do not be afraid to accept support! Never underestimate the power in knowing you are not alone. Check with your area and see what type of resources are available. We would have never know there is a Deaf/HOH playgroup that meets every week a mile from our house! We are also blessed with social media outlets to meet parents, adults and professionals who are going through our EXACT situation. I never wanted to admit that I would need to join any support group, but it has been the biggest blessing we could ask for!
4. You are your child’s best advocate. If something doesn’t feel right, speak up! Remember these are doctors and therapists you will be working with throughout your child’s life. If you don’t feel comfortable or don’t feel your child is getting the care they need, switch audiologists or get a second opinion. We switched for this reason, and could not be happier we made that decision.
5. Enjoy your child! Try to educate yourself as much as possible, but don’t get too caught up in research and appointments that you don’t stop to take in and enjoy your child for the perfect version of themselves that they are. I always wondered if I would ever look at our daughter and not automatically think of her hearing loss. That day has come, and it happens faster than you think. As long as you allow yourself to take a step back and enjoy every little laugh, snuggle, and the simple joys that come from being a parent. One day you will look back, after everything has worked out and your worries subside, and you will be happy you spent your time enjoying the little moments 🙂.
