Jillian's Story

(as told by Jillian's mom, Andrea)

Jillian was born on October 11th, 2006 and at birth, her Dad and I were told that she did not pass her hearing test and that she would need to be re-tested within 30 days. We were told that this was common with a c-section delivery and she probably just had excess fluids in her ears. As we brought our newest angel home, we scheduled her appointment and went about celebrating her new life.

As I took Jillian to her appointment, I held extremely positive, I guess in retrospect, naïve to a degree. All that changed very quickly. My first sign of concern was after I was originally told the test could take up to three hours, shortly after only 20 minutes was I told the testing was complete. As our audiologist left the room, to say that she’d be back with the results, I held Jillian close to me, praying that this sinking feeling in my stomach was wrong.
When the audiologist returned, she told me that Jillian had been diagnosed with profound hearing loss. I can still remember sitting there, holding Jillian tighter than ever before, and praying. I prayed that somehow they were wrong. My husband and I come from families who hear – we didn’t know anything different – and I felt lost.

Amidst all the confusion and sadness that I was feeling, I was given a small glimmer of hope before I left that day. The audiologist told me about Cochlear Implants, and that with hard and continuous work, someday Jillian would be able to hear.

I walked out of the hospital holding Jillian in my arms, pushing the stroller to the car. I sat in the car holding her and praying to God for strength. Too many thoughts were running quickly through my head – how do I protect her from danger? How will she know how to take care of herself? I was overwhelmed. But as I sat there holding Jillian, I observed other parents entering the hospital with their children. There were children who were bound to wheelchairs valiantly pushing themselves into the hospital, their parents’ right by their side. Children obviously fighting cancer, their little heads bald from the radiation, yet still walking proud, as their parents held their hand tight. It occurred to me that I was blessed, that Jillian was blessed, and that I had the strength and courage to do whatever it took to have Jillian hear someday.

That night I spent hours online researching, gathering information and learning everything I could about Cochlear Implants and the Deaf community. We also prayed and thanked God that He chose us to be Jillian’s parents, knowing that we would take care of her and her situation. Not being people who took “no” for an answer or understood what “can’t” means, my husband John and I knew we had a fight ahead of us, and we were going to be prepared.

We also made lifestyle changes. At that time John could stay home during the day to make sure Jillian could go to her speech therapy three times a week and ensure she was wearing her hearing aids that she was fitted for at two months old.

For our family, Jillian’s future rested squarely in her ability to have the Cochlear Implant surgery as soon as she was medically able, which we were told was at age 1. Our next set of challenges came as we began the process of requesting approval from our insurance company to cover the cost of this surgery. They repeatedly denied our requests, citing “non-medically necessary procedure”. Just as we were feeling our spirit weakened, I received an email from our audiologist, introducing me to Courtney Baker, Rhyan’s Mom. Our audiologist explained what Rhyan had gone through and that she had successfully received bi-lateral implants.

The next several months I found myself learning first-hand through the experiences of Rhyan’s family how to better proceed and navigate through this complicated world of forms and approvals and appeals and frustration. I also discovered a world of so many families facing the same obstacles, and fighting the same fight for their deaf children. But most importantly, we found friends in Courtney and Matt, and their journey re-energized ours and filled us with direction and hope.

As of February 5th, 2008, Jillian received her first CI! It was 16 months of prayer and determination for her surgery to take place and her recovery to be successful! And on March 8th, Jillian heard for the first time.

I thank God daily that he blessed the Baker family with Rhyan, just as he blessed us with Jillian. I thank Him that he gave the Baker family the vision to create their foundation so that others may have the same opportunity as Rhyan. We were humbled that Jillian was selected as their first sponsored child, and that through their generosity, and the generosity of others, our little angel will someday be given the gift of hearing--with both ears.