A year ago today Matt and I were sitting in a small Doctors office with Abel asleep in our arms, our stomach in knots, waiting to hear what the hour of testing would reveal.
Abel was a full term baby. He was as healthy as could be – gained weight by his first doctor’s appointment, ate a champ, and slept….well, like a newborn. He failed his newborn hearing screening in the hospital but we were told that it happens regularly and they would just retest the next day. It literally didn’t phase me, I was just enjoying my new baby and they told me it was a regular thing. Next day the same thing happened and I gained a little more concern. Again, we were told that it happens regularly with fluid being in the babies ears from birth and we would retest at his first appointment. I left and text my friend that was a nurse and she assured me it happens constantly and not to worry. Fast forward to two more test and an audiologist appointment and he failed every single test. This is when we were sent to Boys Town National Research Hospital.
With our month old baby, we loaded up in the car and drove 5 hours to Omaha. I tried to convince myself all along that what everyone was saying was true – that he was fine, that he could hear, that nothing was wrong. During our appointment, they did an ABR (Auditory Brain Response) on Abel. The ABR test measures the reaction of the parts of a child’s nervous system that affect hearing. (The ABR test measures the hearing nerve’s response to sounds.) We were in a dark, quiet room as she played different levels of tones and frequencies to Abels ears. Mommy could hear the tones, Abel slept peacefully.
We came out of the sound booth and waited for our Audiologist. I prayed with every ounce of my body that what my gut was telling me was wrong (and knew my prayer warriors were praying with me). She gently confirmed our fears and told us that our son had severe to profound hearing loss. Our first baby. How? Why? Tears, tears, and more tears. As Brenda was explaining everything to us I just remember checking out thinking “He will never hear music, he will never hear my voice, hear laughter”, and a rush of a thousand other things at once. I was heartbroken. Matt grabbed my hand and stayed calm and steady, as he does best. He reminded me that it wasn’t that bad and it could be much worse. (And he was right).
It was there that we learned about Cochlear Implants. I knew right away that is the route I wanted to take if it would work for Abel. We need to do testing and see different doctors to find out exactly what the cause of hearing loss was. Right away they took molds for hearing aids and from 2 months on our little boy wore hearing aids any chance he would allow them.
We found out that hearing loss is the most common sensory deficit in humans with deafness occurring in 1:1000 babies and the cause is hereditary in about half of those cases. Through some testing, we discovered that Connexin 26 was the cause of Abel’s deafness. In medical terms, there are mutations in the GJB2 gene – specific proteins are missing that cause sensorineural hearing loss. Matt and I both happen to carry that recessive gene – so we have a 25% chance that our children will be deaf. This is why neither of us, our parents, our grandparents knew of anyone with hearing loss in the family. The ‘right’ two people have to be paired up for it to show up.
Fast forward to January – Abel had surgery and received bilateral cochlear implants. Our sweet boy can now hear! Praise Jesus! It is a different kind of hearing than what we experience (and mommy has to remind herself of that frequently). It is more ‘mechanical’ sounding, but we are so so so thankful for the amazing technology that allows this all to be possible. God really gave us some wonderful talents and brilliant minds! It’s a somewhat slow progression – at first, all he heard was noise. It is our job to help him put meaning to all that noise – dog barking, water running, microwave beeping, leaves blowing, silverware clinking, and so so many more sounds that we take for granted every single day.
It strangely wasn’t that hard of a year. (All thanks to God) His deafness became our normal. Hearing aids (and hearing aid battles), trips to Omaha, new molds constantly, stomping on the floor to get his attention, that was our normal. NOW our lives have changed. Sometimes now I find myself sad that I can’t always give a hug without his CI’s falling off, we can’t continue ‘conversation’ while he’s playing in the tub, that he struggles to hear when we play outside and it’s windy. Overall, though, I am grateful…beyond grateful that our little boy, DEAF little boy, has the opportunity to hear. Hear the music, hear our voice, hear laughter, and so so much more. Truly, to God be the glory.
Through this journey, our faith has been strengthened. God puts hurdles in front of us that make us stronger and wiser. We have met AMAZING people that have spoken life into us, supported us, and comforted us. We moved to a new town that is FULL of wonderful people that have welcomed us with open arms. This was all in His plan! Plus – we don’t have to worry about waking him up with noise! I sneezed while in his room the other night and for a split second I was like ‘crap!’ then remembered, he couldn’t hear me! I can vacuum, put clothes away, talk, watch tv, and that little guy just keeps on snoozing. Anyone who has littles knows that is a win! 😉
I also want to again take a moment to thank EVERYONE who donated towards Abel’s surgery. You helped our family more than you know and you helped Abel in ways that are indescribable. We are forever thankful!