I have three children: Kevin is ten, Brian is eight, and Emily is six. They were all born at the same local hospital, and each had a newborn hearing screening. When we left the hospital with Kevin, amongst all of our papers was a little card stating that Kevin had passed his newborn hearing screening. When I left the hospital with Brian and Emily, the little card had a different message: "Your child has been referred for further testing because he/she did not pass their screening." I still have the three cards taped in their baby books.
On Brian's second day of life, just before discharge, he was taken to the nursery for his hearing screening. The nurse brought him back explaining that he had not passed the screening. She reassured us that it was just a screening, and there are many reasons why a child might not pass. She emphasized the importance of bringing him back for another screening in a few days. He had me very concerned the first few days at home because he never startled to his toddler brother's shrills or the dog barking. The funny part is I didn't associate the fact he didn't startle with not passing the hearing screening. Looking back, could this have been "denial?" We took him back to the hospital a few days later for another screening. Again, he did not pass. The hospital referred us on to an audiologist for further testing. We went home convinced the screenings had been done improperly every time. (More denial?)
We called the next morning, and made an appointment for his ABR (Auditory Brainstem Response testing). For two weeks we ran our own highly scientific tests: we dropped pans, clapped our hands right behind his head, rang the doorbell so the dog would bark, and more. I don't think he ever startled. It was becoming obvious that Brian wasn't hearing. However, we still came up with reasons as to why he wasn't startling. My favorite reason came from the person who told me a baby will not startle because they hear so many noises in the womb that they get used to noises and just ignore them. Do you think we ever broached the subject that my husband has two sisters, one is Deaf, and the other is hard of hearing? They don't live near us, so we ignored that part of our family history. DENIAL? You bet! Besides, they have five perfectly hearing kids between the two of them.
Brian had his first ABR on the day he turned two weeks old. The test went smoothly. The audiologist explained that the ABR results suggested that he had a moderate to profound sensorineural hearing loss. She also convinced me that I did not cause his hearing loss because I saw a loud movie during my first trimester. Logically I knew this, but doesn't mom always need to take the blame? During this visit we were introduced to the audiologist who would make Brian's ear molds and fit him with hearing aids if we chose this route. Karen would become an instrumental person in our family's lives. She is no longer our audiologist, but my children's audiograms are still sent to her. She was the first person I called when Brian received his first set of digital hearing aids, and they helped him to hear so much more. Who else would understand my excitement?
I cried most of the day after we left the hospital, but in a way I was relieved. All along we knew he couldn't hear, and now we could stop denying the obvious. The two weeks of not knowing was far more stressful than finally knowing. We now had knowledge and power. We were no longer in a state of limbo. We were in control now. We could research, ask questions, and make decisions. I remember waking up the next morning feeling really good and ready to start our journey.
He had one more ABR to confirm the first ABR; again, testing went smoothly and the original results were confirmed. We attended the Marion Downs Clinic at University Hospital in Denver when Brian was four weeks old. The team we spoke with included an audiologist, an early interventionist, and a genetic counselor. We learned a lot at this meeting and had many questions answered. Types and degrees of hearing loss were explained, possible benefits of hearing aids, the importance of early intervention, different modes of communication and different intervention programs available in our area. When we arrived at the meeting we had an idea of what we wanted for our family, after the meeting we knew our choices were possible. The team made it very clear that the choices a family makes are a personal decision and must be based on the needs of the family. In addition, the choices that work now may not work in the future. It gave us peace of mind to know that the decision we make today is not set in stone. Choices may change based on your child's strengths and weaknesses.
Brian received his first set of hearing aids at six weeks. A week later, an early intervention provider, Susie, started weekly visits and I returned to work part-time.
Susie was wonderful with our family; she taught us a lot and always saved special time for Kevin at the end of our sessions. Kevin's hearing had been tested right after Brian's hearing loss had been identified. Though his hearing was fine, he was almost two and hardly speaking. He was evaluated by a speech therapist and identified with a significant language delay. Kevin started speech therapy twice a week shortly after Brian was born.
When Brian turned seven months, Miss Patti entered our lives. She worked with Brian once a week until he was two, and was his preschool teacher until he turned three.
It was a busy two and a half years. Brain and Kevin were doing well. I came to enjoy our visits to the audiologist and our visits with Susie and Miss Patti. Brian's transition from part C to part B was approaching. Oh, and did I mention, we had a baby on the way?
That summer, Brian and Kevin became big brothers to Emily. Almost immediately my husband and I noticed Emily had the exact same look in her eye that Brian did when he was a newborn. Neither of us mentioned "the look." Was it our little bit of denial before the newborn hearing screening? Probably. The next morning, I went with her to the nursery for her screening. I had already done my own "testing" and wasn't surprised when the numbers weren't changing on the equipment. The nurse started to explain it was just a screening; I politely told her I already had a child who was hard of hearing, and it probably wasn't fluid in the ear. I called my husband to tell him; he said, "I'm not surprised. She had the same look Brian did. Did you notice?" We knew we had a one in four chance of having another child with a hearing loss; yet, the realization that we had another child with a hearing loss hit us like a ton of bricks. My reaction shocked me. I had said all along it wouldn't matter. I felt so guilty for feeling sad. My first reaction was to hold it in. When friends asked how the screening went, I said she didn't pass, but we were fine.
The next morning I received the call we needed. Karen, our audiologist, had received a message that a baby Evenstad had been referred for further screening. She asked how we were. Of course, I said, "fine." She said, "Jeannene, it is okay to be sad, you and Paul need to grieve just as you did for Brian. Don't put up a front for other people and don't feel guilty for being sad." I was so thankful for that call. I realized it was okay to feel the way we felt. From that point on, I was able to tell people I was upset, but not as frightened as when Brian was identified. We already had the knowledge and knew the process. Brian was a happy normal toddler. We had an excellent team, and best of all Susie and Miss Patti were able to continue working with our family for three more years.
Emily's ABR testing never went quite as smoothly as Brian's. People always said how good Brian was. I understood why after trying to put Emily to sleep when she needed to sleep. Eventually, we were able to complete an ABR. The ABR showed a moderate hearing loss. It confirmed our "home testing" also. We thought her hearing was somewhat better than Brian's. She received hearing aids at six weeks and started intervention immediately.
The first few visits to Karen with all three kids in tow were interesting. Fortunately, Karen would just block an entire morning for us. We would make ear molds, test hearing, run the hearing aids, and test our new FM system. If everyone was really good, Brian could turn on the fan (long story) and Kevin could blink the Mickey/Minnie lights.
We even let him have an ear impression made one day because he thought it was so unfair that Brian and Emily had all of the fun. His expressive language had improved considerably. My husband was always very concerned that Kevin would feel left out. Luckily, our team always included Kevin and made him feel special. By the way, the ear mold impression did not impress him.
Just as every child is different; Brian and Emily's hearing losses are very different. Brian has a sloping audiogram that has slowly progressed. Emily has a relatively flat audiogram that has huge fluctuations at different times. Brian never pulled apart ear molds. Between the age of one and two, Emily dismantled her ear molds weekly. Fortunately, our new audiologist was also wonderful. Every week when we went to Children's Hospital for speech, she put the molds back together. Brian never took off his hearing aids and left them in odd places; Emily often took them off - critter clips didn't help. We are past those stages now. Neither of them can stand not having their hearing aids, and they take very good care of them.
There are incidents that have made us laugh over the years. Of course, those who aren't around people with hearing loss might not always see the humor. Until recently, they both wore the same type of hearing aids and wore different colored ear molds to differentiate between them. Not a problem, except when I took all four ear molds off to clean them, and we hadn't labeled the hearing aids. At one point, we had programmable hearing aids that had a remote. I turned Brian's hearing aids on and could not figure out why they were squealing so badly. I put Oto-ease on them, kept pushing them in his ear, turned them on and off-nothing worked. We had just had them re-programmed! I was ready to call Karen when I realized Emily's hearing aids were in my pocket and had turned on when I hit the remote. Another time, Kevin told me his friend's television was broken, because there were no words at the bottom (Don't all families use close-captioning?).
Our journey continues and takes different routes here and there. There are some days I wake up, and for just an instant, I wish our kids could hear. Then, I realize they wouldn't be our kids - they wouldn't be the same.
Our kids are happy and doing well in school. They are great advocates for themselves. They are confident and very strong-willed. One day a friend said to me, "When your kids were born, I thought it would be so rough on you - but it has turned out to be so easy." I just laughed to myself. Maybe it appears easy because we don't view deafness as a hardship; deafness is just part of our lives. I can't say it has been easy but I also know of things that could be so much harder. We are thankful everyday for the entire team who have worked and will work with our children, and the friends and families we have met along our journey.
Jeannene Evenstad was a parent regional coordinator for Colorado Families for Hands & Voices at the time this was published and is currently the H&V Administrative Assistant for H&V HQ.
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