Ben Practices Politics

We first learned Ben had a hearing loss through the Newborn Infant Hearing Screening. Since 1999, when the Hearing Screening began, hearing loss has been found to effect 1 in 22 infants. Oregon mandated the Hearing Screening as a way to insure early identification of hearing loss. Early identification and intervention can prevent psychosocial, educational, and linguistic repercussions. Infants who are not identified before 6 months of age have delays in speech and language development. Intervention at or before 6 months of age allows a child with impaired hearing to develop normal speech and language. However, when it comes to interventions, often times hearing aids, health insurance companies lack support.

At more than $3,000 apiece for hearing aids and no help from insurance, many families are forced to make financial sacrifices or have their child go without hearing aids. Unfortunately, the identification of a child's hearing loss becomes a financial burden. Families become aware their child needs hearing aids, but are left without means for attaining them.

The issue of hearing aid insurance is heating up, and several states are responding with bills to require coverage of hearing aids for some people. This Friday House Bill 2589 was proposed to the House Committee on Health Care at the Oregon State Capital. The passing of this bill would require insurance companies to pay a portion of pediatric hearing aids.

Ben and I attended the committee meeting, along with several experts in the field of pediatric hearing loss. Ben did a fantastic job modeling his hearing aids for the committee while I told our story. Hopefully we tugged at some heart strings. This is what I said:

Finding out your baby is deaf is like being hit with a pile of bricks. Invisible bricks. He was warm and soft and snuggled in my arms. He looked perfect. How could something be wrong? But, at twelve hours old, I was told he failed his hearing test. Impossible. The nurses must have botched the test. But still, through the denial, I felt pain coming from somewhere.

At two weeks old, we took our baby to get another hearing test. He failed. The dull, throbbing pain of those invisible bricks returned. I could have sworn he flinched when we banged the pots and pans over his head desperately tying to perform our own hearing tests.

After a visit to an ENT, a different audiologist, and two more hearing tests we had our answer. Our son is deaf. All the “I love you” whispers and lullaby tunes had truly gone unheard. He’ll really never know my voice? The bricks pushed so hard I couldn’t breathe. That long, deep exhale of relaxed contentment, of a world full of bright futures and sunny skies that exists in the world of our son were crushed by the dark news of which I had just heard.

I’m his mother. My job is to fix what goes wrong in his world. I hung on the glimmer of hope provided by the audiologist: “He may be able to hear some sounds with a hearing aid.” Hearing aids would be the answer. I knew it.

I researched and found that with my son’s severe loss, he would need high powered hearing aids. Expensive hearing aids. Our insurance doesn’t cover hearing aids. We couldn’t deny our child a chance to hear. Sacrifices could be made. We have a car we no longer drive. Someone might buy it. My husband could work longer hours. I could cut my maternity leave short. Those bricks grew heavier.

We were lucky. Blessed. The Willamette ESD loaned us hearing aids to see if our son responded to sound. On April 1st, at 9 weeks old, my son tried on his first pair of hearing aids. As we snapped the battery door shut, we held our breath. I didn’t know what to say.

“Ben it’s mommy.” He opened his eyes. He looked at my face. He heard my voice.

My son wears his hearing aids whenever he is awake. He smiles more. He enjoys Patty Cake, and Twinkle Twinkle. We listen to Mozart. I can soothe him with my voice when he cries and he hears my goodnight whispers.

If we were not able to borrow hearing aids, my child would be missing these sounds. Soon we will need to buy Ben his own pair of hearing aids. Unfortunately, the high cost of the hearing aids creates a barrier for families like ours. Our insurance does not cover any of the expenses associated with hearing aids. Sacrifices will need to be made. It is not fair that Ben should have to get less expensive, less effective hearing aids, or our family have financial constraints.

We pay for health insurance to cover our family’s medical needs. My child’s eyesight is covered. Why not his hearing? Should he be denied the opportunity to attend regular education classes, develop normal speech, and listen to Mozart?