Maddie and the Miracle of Hearing
Determining the Benefits and Challenges of Cochlear Implants for Children with Combined Hearing and Vision Loss
Children Who are Deaf-Blind with Cochlear Implants
“What can’t you handle?”  That is the question that has haunted me since my mom asked it.  My beautiful child was two months old, and we were in the hospital awaiting a hearing test. But I am getting ahead of myself, let me back up and tell you what pre-dated that fated question.
Maddie was born on October 14, 2002.  She was presented to me as a perfect child. The hospital told me to take her home, and enjoy my wonderful little girl!
However, not soon after I arrived home, I noticed that my bundle of joy’s eyes would roll around in her eye sockets.  It was as if she had no control over her eyes.  My older daughter did not do this, so this was a puzzle to me.
To make a long story short, after a concerned visit to the pediatrician, and a follow-up to the pediatric ophthalmologist, we discovered the Maddie had symmetrical holes in her retina that completely eradicated her central vision.  My sweet, perfect little girl was blind.
You would think my nightmare was over, but really it was beginning.  Maddie was immediately admitted into the hospital with the fear that she had one of the main torches?  Torches?  Yep, torches.  New word for me; I always thought torches were things you chased monsters with, but no, I soon found out differently.  The medical torches they were talking about were toxoplasmosis, CMV, Aids, Herpes, or Rubella.  We were not to go home to digest the information that we had a blind child, we were to report directly to the hospital! 
Once again, I need to make a long story short, but we spent four grueling days in the hospital ruling out the main torches.  Finally, on the fourth day, the doctor said he would like to check Maddie’s hearing.  This stumped me because she had passed her newborn hearing test.  Well, I think she passed her Newborn Hearing Test.  Initially, she failed, but they said it was because she had birth stuff in her ear canal.  They cleaned it out, and then they said she passed.  Hmmm?
As I am awaiting her hearing test, my mother asked the question, “What can’t you handle?”  I remember looking at Maddie sleeping in the hospital bassinet and gave my reply, “I can handle a blind kid.  I can handle a deaf kid.  I can’t handle a deafblind kid.” 
BAM.  Lightning struck!  The heavens opened and by the end of the day, I held in my arms the very thing I said I couldn’t take, a deafblind child.  Yes, you guessed it, Maddie’s hearing test came back that she was completely deaf.  
The realization that my child couldn’t see or hear her own mother set in when I got home.  I remember sitting in the bathtub and just sobbing that my child would never be able to see my face, or hear my voice.  It was just two days before Christmas when we got the news and every present under the tree was a reminder of what Maddie couldn’t do.  Every gift focused on seeing or hearing.  Every gift was a something that she could not enjoy or gain benefit from, it was a bleak time.  It was a sad time.  I remember waiting for something, anything to give me just a little hope.  I didn’t have to wait long.
After Maddie was diagnosed as deafblind, the rest of the health problems came tumbling down upon us as well.  She was hypotonic, or had floppy muscles, and needed physical and occupational therapy.  After an EEG, we found out her brain was prone to seizures (which have since surfaced full force), and she wouldn’t eat and had a feeding tube placed in her stomach.  However, our biggest and most pressing concern was the lack of communication!  How do we communicate with a child who has little to no vision and absolutely no hearing?  That’s when we were thrown a life preserver.  I remember when we went to Maddie’s ENT at 3 months of age and being told about the Cochlear Implant. 
Back then, you had to wear hearing aids for 6 months and prove they were ineffective.  We also had to undergo many other tests, but we jumped through all the hoops with the hope that our child will be given the gift of hearing.  My biggest concern, was that each passing day, Maddie was missing critical information that her brain needed to learn.  She couldn’t learn visually, she couldn’t learn auditorally, she was depending solely on tactual learning, and she was tactually defensive.  ARG!
Here’s something amazing, the FDA’s regulations say that a child must be 12 months to be implanted, however, due to Maddie’s extreme vision loss; Maddie was implanted at 9 months. 
One of the hardest times in my life was waiting that month from implantation to activation.  It was torture.  I passed the day’s making Happy Hearing Day t-shirts, reading on how rehabilitation of children with cochlear implants, and praying that the device worked! 
The day arrived and I crowded big sister, grandparents, daddy, and everyone else close to Maddie into the activation room.  We all waited as Maddie was put through the paces of initial stimulation and I was absolutely amazed by her reaction when she first heard sound!
When she finally went “live”, Maddie just smiled.  She LOVED hearing from the very first moment.  In fact, she cried when her CI had to be turned off for any reason.  It was just the reaction I wanted!  I knew at that moment, my child could hear! 
Things just improved from that day on!  The second day she had her cochlear, Maddie heard music for the first time.  That was the day she discovered her second love.  Her first love was her cochlear implants, her second love is music. 
The last seven years have been filled with language lessons.  I can’t say it’s been easy, or even that Maddie is spouting full sentences.  BUT I can say that she can hear her mother’s voice.  I can say that she hears and she understands language.  I can say that she LOVES hearing, and her cochlear is the first thing she signs for in the morning, and the last thing she’ll give up at night. 
Maddie’s cochlear implant has been our link to communication.  It’s been our miracle.

For more about Maddie and her continued journey, visit her blog at www.caringbridge.com/visit/maddiegarvue



Funded by the U.S. Department of Education, Office of Special Education-Technology and Media Services for Individuals with Disabilities (CFDA 84.327A).   Grant H327A080045; Project Officer, Maryann McDermott.  Opinions express within are those of the project/author and do not necessarily represent the position of the U.S. Department of Education.