Jackie's Story

Jackie was born January 31, 2000 to Amber and David. She had a very normal birth with no complications or illnesses along the way. She progressed fast and was very strong from her first day, even standing with straight legs if someone would balance her. Her curiosity was great as she wanted to just watch and learn until she could crawl and start getting into the action herself.

Jackie seemed to be ahead of the rest of the Lamas class that we kept in touch with until the other children started to speak. We began to notice that her attention span was short lived for certain toys and that she had almost no interest in video shows. Jackie also never liked to be out of anyone's sight, especially mom's. She would throw terrible fits if she was put in her crib without being asleep first.

Jackie liked to be in clear view of everyone and be able to roam back and forth from person to person. She also liked to feel a heartbeat, usually mom's, whenever she was stressed or tired.

We started to follow her around shaking car keys and ringing bells, even clapping our hands in front of her face when she was sleeping to try and get a reaction from her and half the time we did and the other half we didn't which confused us even further. Jackie was so normal to us, she could laugh and giggle and make all kinds of screeching sounds. We didn't think she could be deaf and make so many different types of sounds, we thought she would be monotone if she were deaf or not even know she was making noises.

Finally it was time for her one year check up and her pediatrician was concerned that she still hadn't made any "momma" or "dada" sounds or attempts, she knew of our situation over the past few months and had us seek a specialist to help identify if there was any fluid build up or other issues. It was a month long wait before we saw the ENT. He informed us that Jackie's ears were a little waxy and that her eardrum's responded well to tests. After a sound booth test he diagnosed her with a sensory hearing loss but also comforted that Jackie could probably be helped by hearing aids or a cochlear implant, which we had seen on television several weeks earlier.

He suggested we go to St Mary's Children's Hospital in West Palm Beach for a special test called an ABR that would paint a clearer picture and that afterwards we seek out University of Miami as they have done wonders for hearing impaired people of all ages, especially children with sensonoural hearing loss.

Right away we bought an American Sign Language book and started to teach Jackie and ourselves sign language. What a difference it made when we could all communicate and understand what our baby was going through. We were also very careful to not let Jackie see our sadness as we were very upset and grief stricken that she never heard the songs we sang to her or the voices of her mom and dad when we told her how much we loved her from the time she was in the womb, she never heard anything and it made more sense to us why she had to always be in sight of everyone and how she needed her hand on your heart to be comfortable to fall asleep any time. Jackie knew sight and feeling that was it, no sound.

Finally the day came about three weeks after her diagnoses to go to have the ABR done and her results were that she was profoundly deaf, at least off the chart that they tested with. Her right ear responded with nothing and the left ear just a slight chance of a possible response from the cochlear sonar test, again we were comforted by the audiologist with the fact that she could be a possible cochlear implant candidate. We took Jackie home and kept living as usual and started to search the internet for deaf societies and help in any way that we could to bring a quality of life to Jackie.

We remembered how the first ENT mentioned Miami University Hearing Institute and on a Saturday evening about 11 p.m. after we searched the web site we came across a place on their website to ask questions of one of the program directors. We wrote a quick paragraph about what we had gone through, sent it off and went to bed.

Much to our astonishment Amber checked the email when we woke up in the morning and a response had been sent at 4:30 a.m. The message said that no matter if we had insurance or not, he wanted to see Jackie immediately, that time was of the essence and still well on our side, and he made sure we were down there within two weeks for a meeting with the Cochlear Implant (CI) team.

They sent us driving directions and we drove down accompanied by friends to meet the most caring and courteous group of professional so far, this was all too good to be true! It was easy to see that the entire staff and especially Dr. Balkany really love these kids; just by the way he cuddled with Jackie and was very honest with us.

He said he could not promise us anything and explained that not every deaf child is a candidate for a cochlear implant; that we would have to do a hearing aid trial for almost three months and do Auditory Verbal Therapy every week to see if there was any benefit first from the hearing aids and if not we would have to have a CT scan done to see if Jackie actually had a cochlear nerve going to the brain for an implant to work. He also explained that the family had to be willing to follow the program very closely, which meant we had to stop using sign language for awhile.

He welcomed us to the trial and brought us to meet the whole team and Dr. Hodges the other Director spent time with us and along with the rest of the staff. They answered all our questions and made us feel at home, never once talking insurance or costs as they would work that out in time, Jackie was more important right now and what really amazed us was Jack, he was a member of the team that had a cochlear implant and could hear all we said and talked back to us very well, we were blown away to say the least.

We started with the hearing aids that Medicare provided. They were not that great and University of Miami gave us a free loaner pair to try when we went for an ear mold fitting. It seemed that the hearing aids only squealed and whistled but didn't help Jackie hear. After almost two moths it was clear that Jackie was getting no benefit from the hearing aids and we moved on to the CT scan. Dr. Balkany gave us the greatest news when he read the scans and showed us the blueprint of her ear and nerve to the brain and explained how Jackie was a perfect candidate for a cochlear implant and then he said to us with a smile "now I can promise you something, this little girl is getting an implant, she's perfect for it".

The hardest day of our lives was signing consent forms as we wondered if what we were doing was right, but I could not take the chance of having her come to me latter in life and ask me why I didn't do this for her, so we showed up Halloween morning with Jackie and they got her prepped and into pre op. A friend and I were with her the whole time and were so nervous about the surgery and how she would behave when they took her from us, the anesthesiologist met with us and gave Jackie a liquid sedative that started making her groggy and the OR nurses brought her a big koala bear that had a cochlear implant of its own, and Jackie motioned and said in her own way that was what she was getting and seemed to know what was going on. After a while they came and let us carry her all the way to the OR entrance doors and we kissed her and waved goodbye for now while the tears started to fall from our eyes but she was happy holding her koala still and the nurses assured us that everything would be fine.

It was almost 8 a.m. when we made it to the waiting room and met started the wait. At 1 p.m. Dr. Balkany greeted us at the doors with a huge smile, telling us how wonderfully the implant went and how well she did. We were overjoyed.

He said it would be about a half hour before we could see her so we started calling all the family and friends waiting to hear the news. We slept in Jackie's hospital room overnight and she was released the next day by 11 a.m. Jackie was very happy to be going home and actually clapped when we pulled in the driveway.

She recovered so fast that by 5 p.m. that evening she wanted to go play on her swings, we didn't let her, but she wanted to. Jackie healed well and then we were told that November 26 th would be the day we turned the implant on for Jackie, we all drove down again and when it was Jackie's turn we were so nervous that we all just sat and watched. We were so excited. Every time they turned on sound to the implant, she would hide her face in her mother's chest. Jackie could finally hear sound, but she didn't know what it was.

Once the mapping was done she actually liked the sounds of life over the beeping that she heard first and that night for the first time ever, Jackie snuggled with daddy on the couched and watched three Christmas cartoon specials in a row without flinching, smiling a lot and pointing to the TV set. All I could think was in her head she was saying, wow, so this is the big attraction.

Jackie's new life began that afternoon and since then she has been progressing very well. She has been hearing for about two and a half years now and understands everything we tell her. She has become quite the chatter box. Jackie loves to dance and sing and when we are outside she loves to tell you when she hears the birds chirping and singing and dogs barking, she even answers and barks back! Jackie has also developed a love for all of the Disney characters and songs, she loves going to the parks, and enjoying all the sights. Being a Florida resident really has its perks, especially when the University of Miami Hearing Institute and its special CI Team and family are one of them.

We were given a very special gift when God gave Jackie to us and Drs. Balkany and Hodges along with their team have given Jackie a very special gift, sound! Jackie loves to show every one her special ear and is very proud of it. Dave's mom makes her special harnesses so she can run and be as wild as she likes keeping the processor protected and her comfortable. It is a great joy to see Jackie listening to music, dancing and singing, hearing birds, and understanding when she is spoken to. Our prayers were answered. We couldn't imagine going trough this without the CI team and staff along with all their kindness and support. They are a part of our family.

Thank You University of Miami Ear Institute

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