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Baby... can you hear me? Part 2
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Wyatt hearing for the firs time!Wyatt was growing and becoming everything that a 3 month old was. He was happy, very visually alert and content, yet Matt and I remained worried and stressed. 3 months of testing and waiting passed. We were disappointed after every appointment that they still could not give us any different results. Finally we were put in touch with our Early Intervention team through the school district, and saw the audiologist that takes care of the school kids in our area. It was only by fate that were connected with this wonderful man (otherwise I do not know when we would have stopped the cycle), but he felt that the tests were very questionable and recommended us to have a sedated ABR (which is a hearing test that they due while the baby is sleeping that measures the brain activity to various pitches and frequencies). This was the first that I had heard of such a test being a possibility. I was elated!
11-11-10- Was a date that will stick in my head forever. That was the day that we got our answers. The ABR showed that Wyatt was indeed hearing impaired and needed to wear hearing aids. They would have to do another sedated ABR in one month to confirm that the hearing loss was stable and would be fitted for the hearing aids after. It also concluded that the loss was permanent and he would not grow out of it and that if it changed it would be for the worse. Even though I had plenty of time to prepare, the feelings were overwhelming. Happiness, that we finally knew Wyatt’s true identity. Relief, that we conclusively knew the levels that he was hearing at and could begin our journey of raising a hearing impaired child. Sadness, that our child was faced with having a life-long disability. Anger, that we had wasted all that valuable time of learning language and bonding (it is amazing how much, even in those first 3 months, those infants are learning.) Fear, of all the possible syndromes that have an associated hearing loss, that could be life threatening. I know it sounds bad, but I was terrified and panicked as well. I felt helpless and fear-full of failure as a mom. The motherly instincts that are present in all moms do not cover raising a child that experiences the world completely different from you. The grandparents seemed to be affected as well. Not sure how to relate to him and what his needs were, they were hesitant to care for him and consequently they missed out on precious time that they cannot get back.
At the time of diagnosis, we were given so much information that it made our heads spin. It felt like this information was a day late and a dollar short. Since we couldn’t get answers about Wyatt, we could have at least been reviewing this huge packet of info to help us pass the time while waiting. Making us feel as if we were actually able to do something! If he would have had this ABR test after the failed screening 1 week out of the hospital, the last 3 months could have been spent learning about hearing loss and how it affects the individual and their families. We could have been preparing our house and starting to learn sign language so that we could communicate with our child (which we did not do, because it was not yet a reality). We could have had him in his hearing aids and been on the road to allowing him to start his way of life. But those were all missed opportunities. Now it was time to play catch up.
It ended up being 6 months after birth, before he was fitted with his first pair of hearing aids. It was almost 3 months after that, before he became a full-time user of those aids. I decided to cut back from my full-time health care profession and stay at home a majority of the time to give him the advantage of having full-time care devoted to re-gaining his impaired development. Today he is 21 months old and has a significant delay in his speech. He has been assessed at only having a speech development level of a 9-12 month old. It was only within the last month that he began calling me ‘mama’ and dad, ‘dada’ (which I have to admit, was the most beautiful sound I have ever heard). Most parents get to experience that joy when their child is about 9-12 months of age. He relies a lot on his sign language but is making great improvements and is making new sounds almost daily, despite his setbacks.
Strangely enough, this is all a great testament as to why newborn hearing screening is so VERY important. Not just the initial screening, but the follow-up as well. Wyatt’s struggles, as well as our own, have driven me to devote my spare time to helping make sure that parents and their infants do not have to go through the unnecessary waiting and worrying that we experienced. I want to help give them the opportunity to be able to embrace their differences and not have the disadvantage of not having well-known protocols for the newborn hearing screening and follow-up. I have been given the unique opportunity to be part of the 2021 Newborn Screening Task Force, for Baby’s First Test, and I am hoping that my voice will be heard to help all the parents that are going through the unknown of having a newborn that failed their screening test. Hopefully, their question of, “Baby… can you hear me?” will be answered in a timely fashion, so that they may enjoy their child growing day to day, instead of spending it struggling with the system to simply know who their child is.
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