We are very excited to introduce you to our firstborn daughter. Her name is Gabriella Michel and she is a millennium baby! She turned seven on March 14th of this year and she is a beautiful, bright, sweet little girl. From the first moment we laid eyes on her, we fell in love! She was a huge bundle of joy, literally, as she weighed in at 9 lbs. 3 oz.! She had a head full of dark, black hair and beautiful brown eyes. We finally settled in for our first night as a family of three.
The next morning, the joy we had experienced the night before turned into a nightmare. Our hospital room was suddenly filled with grim faced doctors and nurses telling us that they were concerned for our new baby girl. I felt as though I was in a foggy, black hole as I heard them say they would be doing additional testing on her ears. I would not believe them when they told us that she had failed two previous hearing tests, I was sure it had been a horrible mistake. Unfortunately, when all was “said and done” it was all true! Our new baby girl was profoundly deaf in both ears and worse yet, she was diagnosed with a very rare condition called DOOR Syndrome. This is an acronym for difficult to pronounce medical terms. Basically, the “D” stands for the profound deafness, the “O's” describe her slightly longer than normal fingers, toes and lack of nails on both and the R for retardation.
I sank deeper into my abyss as I heard the details the geneticist was giving us about our seemingly “perfect little girl”. I wanted him to leave the room and leave our lives forever; he was not on my favorite person list! I was certain that he was mistaken in his diagnosis. The hospital staff was very kind and helpful and they gave us the names of some facilities we could call to help us in our new journey with a deaf child. One of those facilities was Sunshine Cottage School for Deaf Children. On the fourth day after her birth, we all went home.
All I wanted to do was hold my new baby girl and never let go! I cried day and night and just held her as tightly as I could. My husband was a saint! Although he was full of pain and grief as well, he stood strong and took care of me and the baby. My husband Robert took action by calling the specialists as well as the school that had been recommended to us. I was in complete denial, and didn't want anything to do with this frightening reality. Thankfully, Robert stood his ground and took us all to visit the doctors and the school. Through this early intervention, Gabriella had been fitted with hearing aids by the age of six weeks and was on her way to hearing!
Gabriella wore the hearing aids for almost two years but was not really benefiting from them. Her hearing loss was too profound and she was not yet talking because speech sounds were not coming through to her. So, at 23 months of age she went into surgery to receive a “cochlear implant.” It was very difficult to let them take our baby behind the doors for this major surgery. Fortunately, however, we had fallen in love with her doctor, who, in our opinion, is an angel from God. Since our insurance plan would not, and still does not, cover cochlear implants, he took matters into his own hands and sprang into action. He persuaded the implant company to donate the cochlear implant and then did the procedure without charging us his usual fee! We couldn't believe that there were so many people willing to do this for our family. When she came out of the surgery room, she looked so peaceful in her slumber. As she slowly woke, she gave us one of her famous smiles – we then knew all would be well. Seven days after her surgery, we all went to the doctor’s office to get "turned on." The implant was programmed to Gabriella's particular audio levels. We all knew the exact moment she "heard" her first real sound. Her eyes opened up wide and the biggest smile of her life lit up her beautiful face. We all clapped and cheered as she continued to show enthusiasm with what she was hearing. That was five years ago, and we are now embarking on a new road in our journey.
Gabriella attended the school for the deaf from the age of six weeks where we were part of a parent's support group, and where she would receive speech therapy on a weekly basis. At the age of three she attended school full time, five days a week and completed kindergarten. This year, she was mainstreamed into the public school system and has completed first grade; at grade level with the other children. Thank God the doctors had been wrong about one thing: there is absolutely NO retardation in our baby girl! She is very smart and loves to sing, dance, jump rope and ride her bike. She is also a big sister to a little brother and sister.
It is very difficult to understand why an insurance company denies your claim for such a life changing surgery. However, that is the position we are in. Although our insurance company covers most everything else, Cochlear Implants are not under the coverage plan. Even when we appealed and explained how this surgery would alter our child's life for the better, they won't approve it. We were somewhat prepared for this, since Gabriella's first implant surgery was not covered. We've looked into other options and researched into various other organizations that help in these situations. Unfortunately these organizations only assist “first time” recipients of cochlear implants.