PARENTS FOR COCHLEAR IMPLANT - WWW.PUZNICA.HR

Introductory Notes

Telling this story is difficult for me, because it reveals my own and my family's privacy. It makes me the focus of other people's interest and curiosity that can threaten our harmonious family life and expose my child to the unreceptive climate that dominates our culture. However, many parents with deaf children come to me for advice on how to deal with their own and their children's problems. I do not dare to give advice, but I can share my experience and I believe it is my obligation to do so. Many people around the world shared their experience with us and I will do the same, in a way that seems most appropriate to me - by telling Ana's entire story. This experience is both painful and beautiful, and is also enlightened by showing a new dimension to life. However, this account, regardless of the facts upon which it is based, is biased and the reader needs to maintain an objective distance. It was written with no literary ambition and is not novelized, but should be regarded as a personal, documented chronological account.

Learning that your child is deaf changes your life, gives new meaning to your existence and sets different priorities and goals. This is a fact that should not be perceived as misfortune, but as a challenge, a mission. This is the hand you were dealt and you have to cope with it and fight on. My wife was the first to realize this. However, the emotions deep down in your soul are yours alone and you can never share them with anyone. It is from there that you draw your strength.

During the period when we did not know about the cochlear implant, there were no dilemmas, because there was no choice. Learning of a new alternative, namely the possibility to enable your child to regain hearing with the aid of new medical technology, raises the question of parental duties. Not only from a practical, but also from an ethical point of view. The question is whether to let the child be deaf and undergo standard rehabilitation or to venture into new, uncharted territory. Whichever you choose, you must live with your decision. We made our choice responsibly.

Since I am the father of a child with the cochlear implant, namely the "artificial cochlea", I can, based on my own experience, express my admiration and gratitude for the miracle that was given to my family. Our daughter was born with a profound hearing defect, was operated on at the age of two and today, at the age of four, can hear and speak, sing and recite, whisper, shout and talk all day long, even when her speech processor is not on. She also talks on the phone, but she gets bored because she cannot see the collocutor and hangs up after a short while. It is a wonderful (and convenient) thing to be able to call her from another room and to hear her responding to your voice. It is even more beautiful to listen to her playing on her own in the next room and talking aloud. Her discourse is a flood of words, a combination of stories she heard in the kindergarten, at home and during rehabilitation sessions and the stories created by her own imagination. Ana is truly a happy and vivacious child, and my wife and I are very happy with her progress. We estimate that her speech development is delayed by less than one year in comparison to hearing children and as time goes by, she will compensate for it and become practically on par with her hearing peers. How much the remaining defect will affect the timbre of her voice or her pronunciation is difficult to predict now. Ana is one of those children who make rapid and brilliant progress. Not all children are like that. Every child is different and the road leading to that kind of progress is not a fast or simple one. It requires daily work that yields its first minimal results after six months. After that, things progress more rapidly.

We regret each day's delay of the surgery, since this was a waste of precious time. Instead of having Ana operated on when she was two, we could have done it when she was one and a half years old, but we did not receive timely, relevant or complete information concerning the available options. We heard so many vague statements that only confused us even more. It was so hard to hear recommended experts say that the cochlear implant was not the right thing for our child, and that our child is deaf. When we asked why we never received an answer. We were faced with a wall of silence when we tried to contact those people whose children had been operated on. We could not get their addresses, even though we knew they were out there somewhere. In addition, since one lives in a stressful state of shock after learning that one's child is deaf, it is easy to miss a relevant piece of information.

Sadly, our experience shows that the social, health care and educational institutions in Croatia proved to be a poorly informed and non-transparent system that barely made any progress as to inform the public of cochlear implantation. With few exceptions, doctors failed to tell us that deaf children could be given a chance to hear. However, parents did not know to whom they could and should turn. There are no written instructions, advice or checklists for parents who face a hearing defect in their children, and there is so much that they need to do. It is as if the system makes people search for the solution on their own on purpose. Instead of the healthcare system's institutions, it was actually the popular media and the tabloids that informed the public of the cochlear implant, even though it sometimes published exaggerated stories about miracle surgeries. Sadly, I have to report that those trivial articles actually did more good for the parents and the children than the supposedly competent services and institutions that failed to fulfill their duty, mission and role. The newspapers provided the information, stirred up hope and encouraged parents to venture into the unknown, despite the lack of support from the medical professionals.

Now I believe I know what the problem was. Only a handful of people had any knowledge of the cochlear implant and they hesitated to give advice, since they themselves were unsure about the results. However, they should have known more. I do not hold that against them today, but I admit I was angry with them when I learned more about the speech processor system and the cochlear implant. I was very angry, because my child was the victim of the ignorance of many people, with some notable exceptions.

In order to make our wishes come true, as we hoped and prayed, we had to tread a difficult path of searching for information and realizing the operation which was not a simple task, either from an organizational or financial aspect. We constantly wondered what were we getting ourselves into and whether the choice we made was the right one. My wife and I encouraged each other, but it was she who was stronger and more decisive. I thank her for that.

Let's start at the very beginning.