PARENTS FOR COCHLEAR IMPLANT - WWW.PUZNICA.HR
Matija

The birth of a child is the happiest moment in one’s life and until it happened to me, I did not realize that you could love somebody so infinitely and unconditionally as I love my children now. I therefore believe that, fortunately, most people find it hard to understand how shocking it is for parents to find out that their child is deaf. For me, it was terrible to know that I could not soothe him when he cried at night and that I could not sing him to sleep. At first, we were in denial and put off visiting a doctor, subconsciously fearing the diagnosis. When we finally took Matija for a checkup, which confirmed our fears, we found a great relief in learning that something could be done. Hope is the most important thing in life. We were informed about the cochlear implant at the very first checkup, which gave us the hope that we so much needed and eased the initial shock. Luckily, we are doctors and therefore had better access to information. We discussed the issue with colleagues and read a number of articles before we actually decided to have Matija undergo cochlear implantation.

After the decision was made, we lived in fear and in hope. First, a series of tests had to be done in order to determine whether it was indeed the cochlea that was damaged and whether Matija was a good candidate for surgery. Afterwards, we had to collect money to buy the implant. Finally, when the finances were covered and the implant arrived to Zagreb safely, we were faced with the ultimate challenge: the operation. Everyone is scared of operations, and when the patient is your own child and the surgery is performed on the head, you really have a lot to fear. However, the results that we hoped for were encouraging enough to go for it.

During the operation, I sat outside the operating room and waited anxiously. I was relieved when they told me that he was anaesthetized and that the operation had started. When I was informed that the cochlea was passable, which meant that the implant could indeed be inserted, I heaved a big sigh of relief and waited for the operation to finish with an almost easy mind. I was completely at peace when I saw Matija wake up. The next day he was running around the room as if nothing had happened. In fact, the surgery was much more unsettling for us than it was for him. Once it was over, all our fears and worries ended.

Matija, February 2001

A month later, Matija got a processor for the first time and the first adjustment was done. When we saw him react to the stimuli he received through the processor and when we found out that could hear all frequencies, we were overjoyed. Matija got his implant when he was two years and nine months old. It has been a year and a half since then and he attended group rehabilitation sessions at SUVAG for a year, and he has attended individual rehabilitation and logopedic lessons throughout that period. Now, he never stops talking and sometimes I have to tell him to be quiet for a while, and that is something I thought I would never have to tell him. When we are on the street, I can call him even when he turns his back to me. We can talk in the car when he is in the back seat, without me turning around. Matija has a serious hearing defect, but when he puts on his speech processor, he is a hearing child with a delayed speech development.

This autumn, when he turned four, we enrolled him in a regular kindergarten. His transition to a new environment was smooth and he communicates with his peers without any problems, which makes him, us and the kindergarten teachers very happy. The implant is a great help for us as parents, because we can now communicate with our son properly, but it also means a lot to him. It was particularly evident when a part of the processor broke down this summer and he was not able to use it for a couple of days. Every morning, he would ask us to install the processor and every time we had to explain that it was broken and that it would be repaired soon. He was jumping with joy when the spare part arrived and he could hear again. To achieve this happiness for both our child and ourselves we had to face, in addition to our emotional ups and downs, a number of professional and administrative obstacles. Most parents first have to cope with a lack of access and even concealment of information on the options that a child with a serious hearing defect has. In addition to this, because certain medical circles feel uncomfortable about this new technology, we had to deal with discouraging remarks about the implant and even misleading and incorrect information. The parents who chose to ignore this were then faced with the fact that the Croatian Institute for Health Insurance was not willing to pay for the implant. Most parents decided to raise the money for the implant and often received help from their relatives or the community.

Matija i mlađi brat Grga, ožujak 2001.

Aware of these problems, several of us decided to join forces and about a year ago we founded the Association of the parents of children with cochlear implants. Our goal is to help parents with deaf children and children with implants, as well as adults with implants, by giving advice based on our personal experience and by offering emotional support. In addition, we want to achieve regular financing of new cochlear implants by the Croatian Institute for Health Insurance, as well as covering the expenses of spare parts and the technical support. Our actions are aimed at improving the rehabilitation of people with cochlear implants which is different from the rehabilitation of deaf people without implants. We will lobby for amendments to laws and regulations concerning our children and all other hearing-impaired people, with or without implants. We have just started our activities and so far the improvements have been modest, but we hope that, with persistence, our goals will be achieved, which will make life easier for us, our children and everyone facing the same challenge.

By Dr. Mihovil Roglić
December 2000