Our Kelsey is Deaf

Two Months Old!

I'm not sure it is possible to be prepared to have someone inform you that your new daughter is Deaf; however, when the announcement came it did not exactly come as a surprise.

Kelsey was born on September 13, 2011. Like her older siblings she failed to pass her first hearing screening. Because we had other children fail their first test, we were not too concerned that Kelsey would never pass a hearing screening, but rather, like her siblings, she just needed a little more time.

We waited the necessary time and had her tested again. Again, she did not pass her hearing screening. We were then told that we should wait another two weeks and then have her tested again. Our suspicions that Kelsey was Deaf began during these two weeks. A loud noise would occur and she seemed unfazed. I took her on a walk in the stroller and when a loud motorcycle stopped at our intersection and she remained asleep, I took special notice.

We waited the two weeks, she was tested, and again we were told she was not passing the tests. At the conclusion of this third failed screening, the audiologist recommended that we have a more comprehensive test performed. This test is called an ABR (Auditory Brainstem Response). Sadly, we were forced to wait nearly 2 weeks for the soonest available appointment.

Kelsey had an ABR performed at Utah Valley Regional Medical Center on October 17th. The audiologist connected electrodes around her head and performed multiple tests to determine if she had a hearing loss, and if so, what kind. Hearing loss typically falls under two categories:

1. Conductive: This hearing loss occurs when there is a problem conducting sound waves through the outer ear, the ear drum or the middle ear. In some cases, this type of hearing loss can be temporary or solved by surgery.

2. Sensorineural: Hearing loss occurs in the inner ear, or the cochlea (snail shaped part of the ear that contains thousands of hair cells), the cranial nerve (nerve that sends the sound waves to the brain), or in the central processing part of the brain (the brain cannot receive the message from the nerve). Typically one or more of these functions does not work properly.

Types of hearing loss fall under four categories:
1. Mild
2. Moderate
3. Severe
4. Profound

At the conclusion of Kelsey's ABR she was diagnosed with Profound Hearing Loss. Her hearing loss is Sensorineural. It is believed that only in some very low tone frequencies she may have Severe Hearing Loss. Having to tell parents of a tiny baby that their child is Deaf cannot be easy, however, we left a little disheartened at the lack of resources provided to us as we left. We were basically told, "I am so sorry. Do some research on your own, and your child's pediatrician can also assist you." The drive home was a somber one and the rest of the day felt like a constant ride on an emotional roller coaster.

Thankfully Alisa works for Utah Schools for the Deaf. This meant that we at least were aware of individuals to contact who could point us to available resources. After taking a couple of days to wrap our heads around the idea of having a child who could not hear, we began making the necessary appointments to educate ourselves on what options we had.

We visited a Pediatric ENT at Primary Children's Hospital who confirmed the previous diagnosis. He was more helpful in explaining what options we may have, and also referred us to an Opthamologist and a Cardiologist to rule our some very rare, but also very serious conditions that can accompany Deafness. There were no complications during Alisa's pregnancy, or during delivery. We have no family history of Deafness, and therefore the ENT felt it appropriate to rule out some of these serious conditions.

Our Opthamology appointment is scheduled for early December. More anxious to rule out any heart problems, we visited a Cardiologist for several hours where many more tests were performed. Thankfully, Kelsey does NOT have the serious condition known as a LQTS (Long QT Syndrome) in which there is a delayed repolarization of the heart following a heartbeat. It was nice to finally get some good news.
Since we have learned of her Deafness we have been grateful to family and friends who have expressed their love and support to not only us, but also to little Kelsey. She is a beautiful girl that we feel so blessed to have in our lives. We do not view Kelsey as broken, disabled, or handicapped. She is merely a beautiful girl that cannot hear. We continue to explore all options available to us and are in touch with some helpful organizations who are visiting our home regularly to educate us. We are embarking on a new adventure. We will continue to update this blog with news of Kelsey, but also of all the crazy things that continue to happen in the Ensign household.