Why I Participate: By Parent Partner Wendy Hewitt

May 17, 2013

Wendy Hewitt and her family
Our journey began in March of 2002 when our second child and only son was born: Ruger, perfect and beautiful. Before leaving the hospital the nurse informed us that he didn’t pass his newborn hearing screening.

“What?” I thought. I remembered signing the paper allowing him to have a screening but really how can they possibly test a baby’s hearing? I was sure it was wrong, and to prove it I was going to make sure I brought him back for the rescreen in about 10 days. After the rescreen, the nurse told me that our doctor would call soon and let us know what we needed to do next. Not wanting to wait for them we called a local audiologist, who told us we needed to call Primary Children’s Medical Center in Salt Lake City to schedule an auditory brainstem response (ABR) test. The very next day our doctor’s office called to tell me that we needed to get a hold of a “LUCDA” and the nurse thought that there was one in Mountain View where we live. This was all the information she could give me. No one explained to me what a LUCDA was.

At the first ABR, the audiologist explained that children develop most language skills before the age of 5 and that without access to sound they have a harder time developing speech. Even if their loss was mild-moderate, their speech could be affected. She also provided me with my first experience with an audiogram—a graph that shows what pitches a person can hear—and a “speech banana”—the shape on the audiogram that shows what range of frequencies and decibels a person needs to detect to be able to hear speech. Knowing how important it was to find out how much Ruger could hear kept me trudging along through various appointments until we knew for sure.

The Journey Continues
After two months, three ABRs, four ear, nose and throat department visits and thousands of tears, Ruger was officially diagnosed with profound, bilateral sensorineural hearing loss. Ear molds were poured and hearing aids ordered. My sister-in-law worked as a secretary at a Child Development Center (CDC) and was talking with her coworkers about what had been going on. They were surprised to hear how difficult the process was and how long everything took, and because of this conversation we were put in touch with our local CDC. At two and a half months Ruger began early intervention and at three months was fitted with hearing aids. I will never forget how big his eyes got when they turned them on. “I love you,” was the first thing I said to him.

Just before Ruger turned two I was asked to be on the Board of Directors for our regional CDC, called the Lincoln-Uinta Child Development Association, or LUCDA. Ah-ha! I finally found out what LUCDA meant, almost two years later.

In June of 2004, our third child and second daughter, Kassidy, was born. She too did not pass the newborn hearing screening, which we knew was a possibility since we found out Ruger’s hearing loss was caused by a connextion 26 gene mutation. It was still hard this time, but we knew the path for a journey a lot better the second time around.

Now 11 years and four implant surgeries later, along with countless hours of early intervention and wonderful teachers, Ruger and Kassidy are both at or above in all subjects. They no longer need speech services and are just doing well. We are very grateful that things worked out as they did. As I look back I think how things could have been very different if our local audiologist hadn’t told me where to go next and if we weren’t able to connect to the CDC through our sister-in-law. It also made me want to use my experience to help others finding themselves in a similar situation.

Giving Back
I helped start the Wyoming Chapter of Hands & Voices in May of 2006 and joined NICHQ’s Improving Hearing Screening and Intervention Systems (IHSIS) project as a parent partner in 2012. I felt these programs could be my opportunity to help to make sure parents were given the right resources by educating doctors about what it is like to be on the receiving side of this information. I also wanted to be able to help parents understand why it is so important to go back for the rescreen after leaving the hospital.

Having a child with hearing loss requires a family to make many decisions and talking with many parents helped us through this process. Whether it was a family the Wyoming Early Hearing Detection & Intervention (EHDI) or the Deaf/Hard of Hearing Outreach office had put us in touch with or another mom in the waiting room at the audiologist’s office, all of the families we talked to offered us priceless insights and knowledge. They had been where I was and everything was okay for them. I hope that my story can similarly help families along the way.

As part of my advocacy work, I wrote a letter to parents explaining that most speech develops in the first 5 years of life and the importance of attending the rescreen. The Wyoming EHDI office now gives this letter out to families after their children have been referred on the newborn screening test. Through the IHSIS program, Hands & Voices directors have begun the ground work to go into homes with early interventionists to answer questions and to support families following the hearing loss diagnoses. For example, one of NICHQ’s parent partners and our Hands & Voices Assistant Director Kim Reimann created a presentation to help doctors understand the importance of families getting the right information on hearing loss (read more about Wyoming’s hearing screening improvements here). In my 7 years working in advocacy, I have had many opportunities to share our story with many parents, and I feel that it has helped many of them as they begin the unknown journey of hearing loss.