Looking to the Light (Part I)

We are new parents to our first daughter, Ella Marie. She was born in April 2009. Our journey of raising a child who would need extra help started the day we were leaving the hospital. Ella Marie did not pass her newborn hearing screening, and we were told not to worry that it was probably just fluid. Of course, as a new parent I was very worried. Everyone tried to tell me not to worry, but those who know me knew that I would. I remember my husband Ryan holding Ella Marie in the hospital and making this statement, "She is such a special girl and she is going to accomplish special things."

At that point it was almost as though I knew something was wrong. Of course, my husband was just talking about Ella Marie and did not think that this statement would linger in my mind. I too know that Ella Marie is special and will accomplish great things and look forward to watching what God has in store for her.

After leaving the hospital 48 hours after her birth, we went home and spent time as a family. We went to the pediatrician's office for her 1 week checkup. She did not pass again at 1 week and we were told not to worry that they still saw fluid in her ears. At two weeks old she was diagnosed with double ear infections so the doctors continued to believe that she may not be passing because of fluid. At five weeks old we went to Children's Hospital in Birmingham, AL and they told us that as hard as it may be we needed to wait another six weeks to determine if it was fluid. At this same visit tests were run and she failed those as well. Finally after multiple failed tests I asked for a referral to Shea Clinic in Memphis, TN. Again, Ella Marie failed her tests there. They set up another appointment about a week or two later and at one day before Ella Marie turned 3 months old a sedated ABR (Auditory Brain Response test) told us that she was deaf. She did not respond in either ear at 90 decibels. Wow! We were shocked.

We thought she may have some hearing loss, but severe to profound hearing loss was not what we were thinking. So of course it has been an emotional roller coaster, but we also look forward to learning along with Ella Marie and providing her with the best chance for success. After finding out that Ella Marie was deaf, we learned that most likely she would be a candidate for bilateral cochlear implants. Before implant surgery can take place, you must go through a trial period of using hearing aids. She received her hearing aids at 3 1/2 months old. Right before Ella Marie turned four months old, Children's Hospital ran an MRI brain scan to see if her auditory nerves were present. Without nerves present Ella Marie would not be a cochlear implant candidate.

(to be continued)

Written by Lisa Clayton, Ella Marie's mom