One Family’s Journey

A Child Like Us… Or Not?

By Jennifer Koehn,
WI Hands & Voices Board Member

When my daughter Emily was born in early June three years ago, my life changed forever.  During my first pregnancy, my husband and I talked about the possibility of our unborn child being deaf, but we thought that the likelihood of that happening would be very small. Like every other parent, all we wanted was a healthy child, but having a deaf baby would be a bonus because my husband and I are also Deaf. For many deaf people, it is their wish that their children would be born deaf. According to statistics, only 10% of deaf children have deaf parents. For this reason, we were doubtful that we would have a deaf child.

Emily had the routine hearing screening at the hospital that all newborns receive within 48 hours of birth. She failed this screening three times. The nurse walked into our hospital room, worried as she nervously informed us that our daughter failed the hearing screening. As soon as the nurse told us the probability of our baby being deaf, my husband and I were dazed at this amazing and wonderful news. I was so thrilled and overwhelmed:  this news seemed so unreal. From here on out, the direction of where our lives were going to change, as we embarked our journey towards immersing further into Deaf culture. What we did not yet realize was that when word of our daughter’s deafness got around in the deaf community, they would suddenly open up their arms and welcome us.

After Emily was three weeks old, we were referred to the Children’s Hospital in Milwaukee for an appointment for a more detailed diagnostic hearing test called an ABR (Auditory Brainstem Response) evaluation.  Once the ABR confirmed Emily’s severe hearing loss, we picked out Emily’s new tiny pink hearing aids. The audiologist did offer the option of cochlear implants for Emily. We declined because hearing aids have been effective for my husband, even though he is profoundly deaf. My husband, Emily and I use American Sign Language as our primary language, but we also believe it is important that Emily is given the opportunity to wear hearing aids, and a chance to develop her hearing and speech skills. We also consulted with ENT, and Emily had a blood test to see if she has one of the few most common genetic types of deafness.  We were curious especially because my husband’s parents were deaf also. The genetic test showed that Emily didn’t have a known genetic component to her deafness. While we could have pursued more testing in hopes of finding the link, we decided to stop there. We had a little girl to raise!

Emily was enrolled into a birth to three year old program at the Center for the Deaf and Hard of Hearing.  Their staff came to our home once every month once Emily was six weeks old to help us to further her cognitive, language and speech development. Our experience with that program was very positive. She knew 20 signs at nine months of age, and that continued to multiply. At 15 months old, Emily started the toddler communication play group and had the opportunity to interact with other children her age.

When Emily was eight months old, I became pregnant with our second child.  We were hoping that our second child would be deaf too. Those nine months, not knowing if our second baby would be deaf or hearing was fun as we imagined the unknowable possibilities ahead of us.   Brady was born in late November 2009. We were excited for him to take the same routine hearing screening to find out what his outcome would be. We secretly hoped and prayed that he would fail the hearing screening. When Brady was two days old, the nurse came into our room at the hospital and hesitantly told us that Brady failed the hearing screening and that she was very sorry. This felt like a dream come true but even better. Mark and I were so happy and relieved that Brady was deaf too because it would be so neat to have a Deaf family.  For the next three weeks, we were on cloud nine, delighted that all four of us were deaf.

Brady was referred to the same audiologist that Emily had been seeing. At the clinic, she explained that before we can pick out hearing aids and colors for Brady, an ABR test should be completed. First, though, she wanted to repeat the simpler hearing screening one more time to be sure he really had a hearing loss. We sat down very confident that Brady would fail the screening. Even the audiologist was sure that Brady, like his sister, would be deaf. Less than five seconds passed when the audiologist looked up at us puzzled and said that Brady passed the test. She repeated the test and once again Brady passed it. 

Right at that moment, the world that I started to build in the last three weeks collapsed.  Everything went into slow motion as my brain slowly processed this reality.  In my mind, I could not and would not accept these new facts that were presented to me.  I told myself that maybe the test was flawed.  I questioned the audiologist and the reliability of the test.  The audiologist assured us that the test was very accurate.  She looked confused because my husband and I were not exactly jumping up and down relieved that Brady had passed the test. I felt as though the very instant the audiologist said that Brady passed the test; my heart was crushed into pieces. I could not believe this was happening. I was even more stunned with how I would wish that my own baby would be deaf.

This experience gave me a glimpse of how hearing parents feel when they first find out that their child is deaf.  I cannot say that I completely understand how hearing parents feel because for hearing parents to find that their child is deaf, they have many more things to learn about; decisions to make; and choices to choose about which paths they want to take with their deaf child. Many hearing parents go through a grieving process over their child’s hearing loss that lasts months or even years.

It took me several days before reality sank in and for me to fully accept that Brady was hearing.  After I accepted that my son was not deaf, the intensity of the moment when we found out Brady was hearing felt like a distant dream. He is now 20 months old and we would not change a thing about him. He is perfect the way he is. To me, it is wonderful that he will be able to experience the best of hearing and Deaf worlds.

Now that we have our children and know where each of them stands as far as their hearing, we have other important things to figure out and questions to answer. With Emily, my husband and I did debate about schools she might attend. We took this decision gravely because our choices would affect her for the rest of her life. My husband knew from the very beginning that he wanted Emily to go to Wisconsin School for the Deaf in Delavan because of the strong Deaf community there. His parents were deaf so he already knew about the strong support system that the deaf community provides.

On the other hand, I was not sure what the best choice was for Emily. I grew up in a hearing family with very few deaf friends. For as long as I can remember, I have heard about how deaf kids who graduate from deaf schools graduate with an average academic achievement of a fourth grader. With this information, I feared for Emily. However, I wanted to stay open-minded about what choices were available and I did not want to limit her options. I did my research and asked several deaf and hearing peers about their opinions and thoughts about deaf schools versus mainstream programs and the pros and cons. 

I realized that I preferred choosing both the deaf and mainstream schools because if Emily went to a deaf school, she could still attend hearing classrooms if she wanted to. She would be in contact with both deaf and hearing kids. She will have opportunities to be exposed to the Deaf culture and develop her identity as a deaf person and continue to strengthen her amazing skills with ASL. Where we were living at that time did not provide Emily many opportunities to socialize with deaf kids her age. My husband and I are fortunate because our move from Milwaukee to Delavan did not impact our jobs as it might for others.

After weighing all the possibilities of a deaf school and mainstream program, I realized that no matter what kind of education Emily receives or which schools she attends, the likelihood of Emily’s success lies within our hands as her parents.  As soon as we reached this decision that we would work together as a family regardless of which school or program Emily goes to, I felt peace in my heart. 

We are excited to start the next chapter of our lives in Delavan. Emily just turned three in June and will start a K-3 program at Wisconsin School for the Deaf this fall. Brady, at 20 months old, loves to play, laugh, and follow Emily around learning from her. Emily and Brady, at only 17 months apart, are best friends and play very well with each other. We are excited to see what the future holds for Brady, too. We are happy with the decisions we’ve made.  We look forward to this new journey in our lives raising a deaf daughter and a hearing son.