My daugther and I On her Surgery DayNella Virga
Nothing could have possibly prepared me for the obstacle that was ahead of us, it would be one that would change our lives forever. One Afternoon after picking up my ten month old daughter from daycare, I noticed she wasn't feeling well. By the time we arrived home, she began to develop a fever. The next morning I took her into her pediatrician but he was away on holidays. The fill-in had a quick look and explained that it is quite normal for a baby to develop fevers from teething and sent us on our way. Within the next three days, I found myself taking her back and forth from the hospital, as the once fever now progressed into a virus. This virus caused a runny nose and a phlegm cough that was making her choke on a regular basis. I was told "it was just a virus" the first trip to the hospital and the second trip I was told there were not enough beds to keep her, but if the symptoms continue to worsen to come back. It was maybe an hour after our return from the hospital that her symptoms began to worsen. As she was sitting in her baby chair, her eyes began to roll towards the back of her head. I immediately rushed her back to the hospital and just as I was about to walk into the emergency, my daughter began to violently seize in my arms. I remember screaming out "Help! I think my baby is dying!” Scooping her up from my arms, the nurse rushed her into the trauma unit where they would attend to her for the next couple of days. Fortunately she made a full recovery—or so we had thought.
Life seemed to be back in order yet, I could sense something was off. Within days of coming home from the hospital, I began to notice slight changes in her behaviors. She no longer wanted to play with her favorite singing Elmo doll, music didn't seem to phase her, and when she called my name it was not longer momma but a slurred "muuuuum.' She went from using her voice to get my attention to throwing whatever was in her hands at me.
This behavior was concerning me so I took her back to her pediatrician. He rang a bell next to each ear and my daughter turned her head, not because she heard the bell, but because it was in her peripheral view. However the doctor insisted that because she turned her head she was fine. This did not sit well with me and so the next day I took her to my family doctor. That was even worse! He insisted it was me, that I was depressed from what had happened to her and put me on anti-depressants. I remember thinking to myself "Am I going crazy? Am I the only one who can see this?" There is nothing more frustrating than to know something is wrong with your child and you can't help them!
There was one particular morning I knew for certain, regardless what the doctors had said; my daughter was no longer able to hear my voice. Like every other morning, I walked into her room talking to her, but that morning as she sat in her crib playing with her toys her back was facing towards me. As I reached into her crib to scoop her up, she jerked back with this terrified look in her eyes, she had no idea that I was even in her room.
Ironically, prior to having my daughter, I worked at an office supply store that had a deaf man who worked in our location. Every morning he would stop by my cash till and teach me a bad word in sign language. In fact I took a night course in sign language so I could communicate with him better. Thankfully, I had kept the sign language books all those years. I figured, until I could get a doctor to listen, I would teach her some sign language words.
It would be weeks after that incident in her room until someone else would notice changes in my daughters’ behavior. As I picked her up from daycare one afternoon, the owner who was very close to my daughter approached me and asked if she could speak to me in private. She then began to tell me that since my daughters return from the hospital, she was no longer responding to the sounds or voices of the staff and kids of the daycare. Although it hurt me to hear this, I was kind of relieved that I wasn't the only one who was seeing these changes. I explained to her that I had noticed the same behaviors at home as well, but that the doctors did not take my concerns seriously. I asked her if she would be willing to write up a letter for me with her concerns and changes in behavior for my doctor to read. She wrote it up immediately before I left. I left the daycare I drove back to my family doctors office and showed him the letter. I insisted that he take this seriously and begged him to schedule a hearing assessment. Although he was still adamant about it, he did finally put in a referral that day.
We waited a long three months for that hearing exam however, the day had finally arrive and I would finally understand what was happening to my child. The doctor began to ask questions and take notes of all my concerns, then my daughter began to call out my name”muuum, muuum, muum."
I began to explain all the behavior changes and asked "Is it possible that this virus caused a hearing loss? "Can a virus cause deafness?"
She assured me that if she was deaf she would not be able to use her voice. To hear the certainty in her voice was such a relief and shortly afterwards, we were escorted into the soundproof booth.
The hearing exam took about an hour and consisted of different tones presented through two speakers in the soundproof room. Some of the tones were very soft and some were very loud, yet my little girl did not bat an eye to any of the sounds presented.
After the exam, a nurse came into the room and told me that she would take my daughter for a walk, while the doctor reviewed the results with me. I should have known at that moment that something was terribly wrong. As the doctors eyes began to well up in tears, she started off by telling me she was a new graduate and that this would be her first time diagnosing a patient. The she told me that she suspected that the virus my daughter contracted was meningitis. She continued to explain the effects of meningitis and that it can damage any organ or many organs in the body and as for my daughter, it damaged her cochlea (the inner part of the ear where sound is processed).
Confused I asked "What does this mean?”
She replied "She is deaf; your daughter will never be able to hear again."
At that moment my heart felt like it had exploded out of my chest, my legs became numb and I slid off my chair to my knees. I began sobbing in tears as I tried to take this all in and comprehend what I was just told. It took me a few moments to compose myself, but I did get back up. I asked her if there was anything we could do to reverse this. She explained that a hearing aid may help to locate sounds, but her hearing was that of a profound loss and that it would minimal help. I then asked her if I could donate my ears for transplantation, but again it was not the response I was looking for, as there were no transplant procedures for ears. My heart was getting a beat up with each response that came out of her mouth. I refused to accept "never." I refused to raise my little girl in a world of silence.
I asked the doctor “Are you God?"
She replied "No."
I then wiped my tears, composed myself and said "Well then, if you are not God then never is not certain, is it?"
She put her head down and apologized. Knowing that my daughter was going to be coming back into the room, I composed myself the best I could and wiped away all my tears. The nurse had now brought her back to me, but I did not give her any indication that anything was wrong. I smiled at my baby girl, took her hand and on our way we went. I'm not sure how I made it home from the hospital that afternoon, but what I did know for certain was; I was not going to accept "never" as part of her diagnosis.
Approximately two weeks after her diagnosis we were put in touch with an early intervention program for deaf children. It was a private program that I chose to access voluntarily, instead of the rehabilitation hospital. They were extremely supportive and would come and work with us three times a week in my home. They would teach us signs and how to communicate with each other. One of their recommendations was to photocopy the signs from the sign language book, cut them out and tape them all over the house. This would allow us to become familiar with the everyday words around the house; even her favorite box of cookies had a sign language label taped to it.
It wasn't easy learning sign language, but then again I was also teaching my daughter sign language. I would study signs every night in front of my mirror and then teach her the new signs the next day. That sign language book was practically glued to me. Every morning on our routine walks I would point to the birds and sign "look, bird," but she would just stare at me with this confused look on her face. There were days I would chuck that book across the room shouting "it doesn't work!" but shortly afterwards, I would compose myself again and keep on trying.
Then one morning on our morning walk, my daughter tugged down on my shirt pointed to a bird and signed "look bird." Every part of my body was overwhelmed with joy and excitement! Those few signs were enough to give me faith that everything was going to be alright. Hearing or deaf we were going to get through this together.
Months would come to pass and the both of us began to sign fluently. Life was starting to get easier, yet deep down in my soul I just knew that if I did my research on medical devices, I would find a solution to help her hear. I began to research everything I possibly could about hearing loss, until finally I would come across an article that would change everything. The article was in regards to a procedure called a cochlear implant. This surgery had to two parts to it, an internal device and an external hearing aid device. The internal would bypass the damage caused internally and the external piece would then deliver the sounds into the internal device.
Reluctant to take no for an answer, I began to plead with her doctors to try this procedure on my daughter. But because the implant had never been performed on a child under the age of two, and because she was not born deaf he was very adamant that she would not be eligible for the surgery. Reluctant to take "no" as an answer I continued to annoy the doctors, insisting she be on the cochlear implant waiting list. Finally, I was told that we would be referred to the surgeon who performs these specific implants and that if he agreed to do it then she would be put on the waiting list.
It only took two weeks to get into the surgeons office and after a ton of tests were performed which all came back normal, he agreed to do her surgery. He booked her surgery and in just two weeks my daughter would have the implant!
My daughter was only eighteen months of age when we went in for the surgery; she was the first child under the age of two to receive a cochlear implant. I was with her the whole time, even in the operating room until her anesthetic kicked in. Walking out of that surgery room was one of the most difficult days of my life. I walked back to her hospital room, kneeled by her bedside and began to pray for the first time in my life.
I remember just looking up and saying "God if you do exist, all I want is for you to give her back her hearing, I want her to hear me say I love you and if you grant me this, I promise I will pay you back one day."
The surgery took approximately two hours and afterwards, the surgeon came out to let me know that the implant was in. I asked him if it was working, he explained it would take a month of healing before they would be able to hook up the external device. He then said something very powerful to me "I am just the plumber; God is the only one who will decide if she will hear."
Thirty days went by and the day of her external activation had finally arrived. Once they connected the external device, I called out her name. She turned her head and looked at me with this confused scared look in her face.
I then said “My girl, mommy loves you so much."
Tears began to roll down her cheeks; my baby girl heard my voice!
Coming home that day was such an amazing experience! After being deaf for so long she had forgotten that her toys made sounds. She was listening to all her surroundings and signing "mom, did you hear that?" there was pure joy in my heart as I watched her break free from the world of silence. I then turned on the radio and immediately she began to dance.
I don't know who it was that I prayed to that day in her hospital room, some call him God, others call him the higher power or the universe. What I do know for certain is, whoever was listening answered my prayer.
My daughter became the top cochlear implant child in the world to ever be able to hear, speak and understand speech at the level she did. She is now twenty years old, has graduated high school and continues to hear.
As for myself, I never forgot the promise I made that day in the hospital. Shortly after she began to hear and speak, I went back to school and graduated university as a Hearing Specialist.
One year after I graduated I opened my own hearing clinic. It would be the only clinic in my city that had a specialist that could sign fluently. My clinic was not only for the hard of hearing, but many deaf patients came for alerting devices as well. I also began to do charity work with The Lions Club of Indiana, donating hearing aids to the less fortunate children of Mexico each year.
I would excel in this field for fifteen years fulfilling my promise. In 2017, I received the Trademark Woman of Distinction Honors Award and the plaque read as follows, "For she had the will, believed in herself, and made history."