A few weeks ago, I was sitting in our ENT doctor’s lobby, waiting for Rowan to come out of surgery. He was having tubes put in his ears and it was apparent that I was not the only parent that day having the procedure done. I kept listening to other ENTs dressed in scrubs, telling their patient’s parents that the child was fine, “the fluid just oozed out of his ear for a long time, there was a lot of it. He’ll feel much better after this procedure. Your child should wake up soon.” It wasn’t long until my ENT came out of surgery to inform me of Rowan’s condition. “The procedure went well, he should be awake soon.” Probing him for the gory details, I asked: “Was there a lot of fluid?” “No, not too much. The audiologist will be out soon to discuss the results of her exam with you.” He smiled, leaving me feeling concerned that we had just put Rowan through a needless procedure. The audiologist soon followed and asked that I follow her into a smaller consultation room off of the main lobby. She proceeded to discuss the results of the ABR exam that we had requested for Rowan, an objective hearing test that can only be conducted while the child is sedated. “I didn’t get much response”, she said. “Though his left ear is slightly better than the right, I would categorize both in the profound hearing loss range.” She pulled out a report with graphs and charts, explaining in greater detail what all the numbers meant, and as she talked, I could feel the dam behind my eyes swelling and beginning to break. “Sorry”, I apologized as I wiped the tears from my eyes. “I thought I was tougher than this, but it was a little unexpected.”
When I say it was unexpected, I don’t mean to say that we didn’t have our concerns. Rowan wasn’t making some of the babbling noises that most babies make and by twelve months when he didn’t know any words yet, we had him evaluated for a speech delay. The evaluators determined that he was average or above average in all of the developmental categories except that he was a few months behind in language and in gross motor skills (he wasn’t walking yet). The delay was slight enough that it didn’t require full speech therapy, only a more general play therapy and working with a physical therapist to help him walk. They hoped that helping him to walk would encourage him to talk as small children can become engrossed in one task and make it their main focus. As part of the evaluation, Rowan should have had a hearing test but because of a cold and suspected fluid in his ears, he wasn’t able to do the test, which led us to the ENT and putting tubes in his ears. However, no one suspected that Rowan had other problems with his hearing. I have thought about the scene from Mr. Holland’s Opus where the mother starts banging pots near her son and is devastated when he doesn’t respond. That would not have been Rowan. He would have turned around, smiled at you, and probably laughed. At times Chris and I would wonder if he was having an issue with his hearing and would try to test him, but he would always respond as if he could hear us. He laughs when you laugh, he’ll make noises when you talk to him. When you walk into a room, he’ll turn around and look at you. I felt sure that he could hear normally, so in that sense, the news was unexpected.
“So what does this mean now?” I thought as I held his warm little body in the recovery room, waiting for him to wake up from the anesthesia. Tears flowed freely now and I think the nurses thought I was another neurotic mother who couldn’t handle the site of her child in a hospital setting. I started visualizing how this would change our family, that we would all become proficient in sign language and find ourselves adopted into a new community and a new way of thinking. I thought about what it would mean to Davin to have a little brother who couldn’t hear. I thought about having to go home and tell Chris the news. I thought about Rowan and how much I loved him and wanted everything in the world for him but knew that there were things he would not be able to participate in. Heavy with my thoughts, I returned home to what would be a long week.
Full of questions, we met for a follow-up visit with Dr. Dowdy, our audiologist. She did another exam to confirm the results of the ABR exam and officially categorized Rowan as “profound hearing loss”; to put it into perspective, Rowan hears at 90-100 decibels and normal speech is between 20-40 decibels. The most powerful hearing aid could only bring him to about 50 decibels, loud enough to hear more sounds but not loud enough to hear language, so he would not be able to develop speaking language on his own. Dr. Dowdy told us that Rowan would be a good candidate for a cochlear implant, something we had never heard of. A hearing aid is like wearing extremely loud ear phones on your ears and their purpose is to amplify sound while a cochlear implant stimulates the cochlear nerve, transmitting sound to the brain. The result is a much better recognition of sound and would put Rowan in the range to hear spoken language, thus making it possible for him to learn language on his own. Although we can teach him a few signs to help him communicate, he will work with a therapist to learn words and will be discouraged from depending on signs.
One of our biggest questions is why and we may not ever know the answer. Rowan passed his newborn screening test and Dr. Dowdy said that they are 98% accurate, which means that he could have been a false positive but it is extremely rare. Usually hearing loss occurs only after a major event such as a head trauma or meningitis, but Rowan didn’t experience either one. Neither Chris nor I have a history of hearing loss in our families, so we don’t really have a clear answer as to why. However, we are on the path toward having the first cochlear implant surgery done (he will eventually have both ears done but we start with one). The past few weeks have been a whirlwind of doctor visits, taking tests, and coordinating therapists (with a lovely break visiting family in Utah for a week). Rowan started with hearing aids this weekend (part of the FDA requirements for the cochlear implants) and his MRI showed that he is a good candidate for the surgery.
Although this wasn’t the answer that we wanted to hear, Chris and I both feel blessed that we have the resources available to help Rowan to hear. It has only been a few years since the FDA started allowing children under two to receive a cochlear implant; it is such a crucial time for language development and we feel like it will be a great opportunity for Rowan. This is a rare and expensive procedure and we feel blessed that our insurance will cover the procedure and that we have experienced doctors to help us. We have had our moments of frustration and sorrow, but they have been overwhelmingly dimmed by the opportunities and possibilities. There is nothing more powerful than hope.
When I say it was unexpected, I don’t mean to say that we didn’t have our concerns. Rowan wasn’t making some of the babbling noises that most babies make and by twelve months when he didn’t know any words yet, we had him evaluated for a speech delay. The evaluators determined that he was average or above average in all of the developmental categories except that he was a few months behind in language and in gross motor skills (he wasn’t walking yet). The delay was slight enough that it didn’t require full speech therapy, only a more general play therapy and working with a physical therapist to help him walk. They hoped that helping him to walk would encourage him to talk as small children can become engrossed in one task and make it their main focus. As part of the evaluation, Rowan should have had a hearing test but because of a cold and suspected fluid in his ears, he wasn’t able to do the test, which led us to the ENT and putting tubes in his ears. However, no one suspected that Rowan had other problems with his hearing. I have thought about the scene from Mr. Holland’s Opus where the mother starts banging pots near her son and is devastated when he doesn’t respond. That would not have been Rowan. He would have turned around, smiled at you, and probably laughed. At times Chris and I would wonder if he was having an issue with his hearing and would try to test him, but he would always respond as if he could hear us. He laughs when you laugh, he’ll make noises when you talk to him. When you walk into a room, he’ll turn around and look at you. I felt sure that he could hear normally, so in that sense, the news was unexpected.
“So what does this mean now?” I thought as I held his warm little body in the recovery room, waiting for him to wake up from the anesthesia. Tears flowed freely now and I think the nurses thought I was another neurotic mother who couldn’t handle the site of her child in a hospital setting. I started visualizing how this would change our family, that we would all become proficient in sign language and find ourselves adopted into a new community and a new way of thinking. I thought about what it would mean to Davin to have a little brother who couldn’t hear. I thought about having to go home and tell Chris the news. I thought about Rowan and how much I loved him and wanted everything in the world for him but knew that there were things he would not be able to participate in. Heavy with my thoughts, I returned home to what would be a long week.
Full of questions, we met for a follow-up visit with Dr. Dowdy, our audiologist. She did another exam to confirm the results of the ABR exam and officially categorized Rowan as “profound hearing loss”; to put it into perspective, Rowan hears at 90-100 decibels and normal speech is between 20-40 decibels. The most powerful hearing aid could only bring him to about 50 decibels, loud enough to hear more sounds but not loud enough to hear language, so he would not be able to develop speaking language on his own. Dr. Dowdy told us that Rowan would be a good candidate for a cochlear implant, something we had never heard of. A hearing aid is like wearing extremely loud ear phones on your ears and their purpose is to amplify sound while a cochlear implant stimulates the cochlear nerve, transmitting sound to the brain. The result is a much better recognition of sound and would put Rowan in the range to hear spoken language, thus making it possible for him to learn language on his own. Although we can teach him a few signs to help him communicate, he will work with a therapist to learn words and will be discouraged from depending on signs.
One of our biggest questions is why and we may not ever know the answer. Rowan passed his newborn screening test and Dr. Dowdy said that they are 98% accurate, which means that he could have been a false positive but it is extremely rare. Usually hearing loss occurs only after a major event such as a head trauma or meningitis, but Rowan didn’t experience either one. Neither Chris nor I have a history of hearing loss in our families, so we don’t really have a clear answer as to why. However, we are on the path toward having the first cochlear implant surgery done (he will eventually have both ears done but we start with one). The past few weeks have been a whirlwind of doctor visits, taking tests, and coordinating therapists (with a lovely break visiting family in Utah for a week). Rowan started with hearing aids this weekend (part of the FDA requirements for the cochlear implants) and his MRI showed that he is a good candidate for the surgery.
Although this wasn’t the answer that we wanted to hear, Chris and I both feel blessed that we have the resources available to help Rowan to hear. It has only been a few years since the FDA started allowing children under two to receive a cochlear implant; it is such a crucial time for language development and we feel like it will be a great opportunity for Rowan. This is a rare and expensive procedure and we feel blessed that our insurance will cover the procedure and that we have experienced doctors to help us. We have had our moments of frustration and sorrow, but they have been overwhelmingly dimmed by the opportunities and possibilities. There is nothing more powerful than hope.
Comments
I appreciate your willingness to share this with us. Our prayers are with you. Miss you.
Jen
Rowan is so lucky to have parents who are well equipped to help him through his challenges. I hope you will keep us updated on the cochlear implant thing. I listened to an NPR piece on them last year, and it sounded like a wonderful development. Lots of love to you all from the Spain!
i am sitting here shocked to find out the news of little rowan's hearing loss. i can't imagine what you are going through just because i know the strong desire for everything to be okay and healthy for your children. and how scary if something is wrong.
i hope that this story will have a peaceful ending for you... somehow... but for now, while things are fresh and painful i'm sending you my love and support. i wish i was there to give you a hug katie.
Em
Amy
On a happier note, i LOVE that photo of Rowan- you and Chris sure have cute kids:)
Love,
Shantelle