PARENTS FOR COCHLEAR IMPLANT - WWW.PUZNICA.HR

Ana in a Silent World

In the summer of 1997, we took Ana to the seaside. First we went to the Pula film festival and then we had some real beach fun at Veli Losinj. Our friends and we shared a big house with a beautiful, rich garden where Ana took her morning and afternoon naps in the peaceful shade of the trees. We spent our time there in peace and quiet, sunbathing, swimming and taking our baby for morning and evening walks in the pram. Everyone was very careful not to disturb the baby and they tiptoed around the house, although we explained that our daughter was a very sound sleeper.

Veli Lošinj, 1997

One day, while walking down the waterfront, a casual chat with a mother who had a child of the same age as Ana, stirred up suspicions again. We noticed that the child turned around cheerfully whenever it heard the mother's voice or its name. We never saw Ana react this way, although until that moment we did not give it much thought. We returned home worried, and this time our concerns were serious. Since it was the time of summer vacation, we could not visit an expert immediately. We hid our fears but upon our return we had a serious talk with my mother, Ana's grandmother Ruza. She said that if the mother is concerned about something, it should not be taken lightly. This made us even more anxious and worried that something might be wrong after all. We were afraid of the truth.

After the summer holidays were over, when Ana was eight months old, we visited Dr. Borut Marn at the Pediatric Clinic. We came into his office anxious, and left it in a state of shock. After doing a short checkup, Dr. Marn confirmed our worst suspicions: our child was one in a thousand, she was deaf. Hypoacusis perceptiva bilat. gradus gravis. The way he told us about the diagnosis, however, gave us a ray of hope. Among other things, I will never forget his words: "The house is there, only the doors are closed". He mentioned the artificial cochlea, but as we struggled to deal with our pain, we failed to fully comprehend the information. In order to open the door to her hearing we had to wait for over a year and open many other doors. Dr. Marn referred us to the SUVAG Polyclinic for Hearing and Speech Rehabilitation where further tests would be done in order to confirm his diagnosis and determine treatment.

The tests done at the SUVAG Polyclinic confirmed profound deafness. After that, many other tests in other hospitals and clinics were performed in order to identify the pathological agents or other possible defects, which were not found, and the final diagnosis was isolated deafness. We spent so much time in waiting rooms, which are not suitable for babies, and where everyone is nervous because nobody knows which patient is the next in line. It would have taken only a little effort to bring some order and improve the situation. There was no comprehensive or relevant information.

We immediately left the pediatrician who ignored the mother's intuition and failed to investigate her suspicions. One should not entrust everything to a routine outpatient examination. How much precious time was lost at the very beginning.

Later, when we opened Our Baby's Diary which Suzana had kept and in which important dates and information on Ana were entered, we saw that she left the rubric Music soothes me unchecked.

My sister consulted well-known and eminent ORL specialists, our father's colleagues, who, as soon as they heard the diagnosis, referred us to SUVAG for rehabilitation, without even mentioning alternative options. We thought, if the experts say so, the deafness was an unchangeable fact and there was nothing we could do.

Living with the Facts

Every day, new problems arose and we felt as if we lived in vacuum. We were aware that, in order to overcome these problems, we needed to maintain a stable and harmonious family life and a caring environment. The family is crucial in setting the atmosphere. We focused on ourselves and on our daughter. We paid Ana much more attention than before. Although we were in shock, we had no time to dwell on it, because we were too busy getting things done. We searched for the doctors who could give us the best advice, and for the ways to get to them. We prepared for the batteries of tests that followed. We made inquiries about alternative treatments that, as we found out, were not available.

We carried Ana around clutching her to our breasts, so that she could feel the vibrations and the resonance of our bodies as we spoke. We rocked her rhythmically and sang to her like we did before. However, the songs were not as merry as they used to be, since the pain was always present. We spoke into the palm of her hand so that she could perceive and absorb the words through our breath. Those were some of the exercises recommended by Dr. Marn, which have the long-term goal of achieving sound awareness.

We did not allow ourselves any lay inquiries into the possible theoretical causes of deafness. We rejected the desperate questions like "How could this possibly happen?". We had all available medical tests done and they gave us no answer. Lay speculations would lead us nowhere but into unjust and unfounded accusations and destructive self-doubts.

Our family sheltered us from low-minded rumors and gossip that were spread once the deafness of our child became generally known. The remarks that did reach us sounded like they had sprung from the minds of medieval folk - even the remarks made by people who considered themselves intellectuals. Fortunately, the people from our immediate environment did not ask questions and we were in no mood to talk. When someone caught me unprepared and bluntly asked about Ana's condition, it instantly made me speechless.

We have a remote cousin Tina who lost her hearing when she was a child. The first people we consulted were her parents. We asked for a vital advice. I will always remember what her mother said when I told her I was in shock. Her true and plain statement, "You'll be in shock for the rest of your life", actually soothed me and gave me new strength. This was so real!

Hearing and Speech Rehabilitation

One of the options we were told of was to enroll Ana in the institution where Sign Language is taught, while the alternative was to undergo hearing and speech rehabilitation using the verbotonal method at the SUVAG Polyclinic [1]. We soon realized that these two approaches where practically incompatible and the two methods were mutually exclusive. It was much later that we heard about bilinguality (which does not have a good reception in Croatia). Well-meaning advice portrayed the situation as black and white. To enroll our child in the sign language class where its Croatian version was taught seemed like willingly confining her to a ghetto where she would be isolated from the world of hearing people. This stigma, as we had seen earlier in life observing the way the hearing-impaired people were treated, was humiliating. Therefore, we opted for SUVAG and we were happy to know that such an eminent institution exists in Zagreb.

As of autumn 1997, when Ana was barely one year old, we started the individual hearing and speech rehabilitation at SUVAG, although we were told that no programs were available for children under three. Professor Dunja Zlataric, an audio-rehabilitation specialist, started to work with Ana (and with us) and thus became a member of our family. We shared our joy over Ana's progress with her, in her tiny office that could barely host three people. This relationship was to last for a number of years. Although the results were not visible at first, after surgery we realized how important these patient and committed efforts were. What gave us joy and hope was Ana's beautiful, rich and joyous laughter. We are deeply grateful to Aunt Dunja who has been working on Ana's case from the very first day.

Prof. Zlatarić, Ana and Suzana, 1997

After two months of rehabilitation Ana was given Phonac hearing aids - miniature but powerful amplifiers that are worn behind the ears. At first they seemed to be the right solution and even audiograms done with them on were significantly better. Despite persistent and systematic efforts, we could not see any major improvement, even after many months of using the hearing aids. Ana did not respond to sounds, although we hoped it was just a matter of learning how to listen.

We did not realize how complicated and difficult the hearing process was, especially for someone who encounters sound for the first time and has to make up for everything that people who have no hearing defect develop in a natural, spontaneous way, without much effort. Finally, we did not know how much sound actually reached Ana. In addition, there was the issue of learning to speak which would, given the hearing defect, require time-consuming work until the speech became well-formed and "polished". When Ana pronounced the vocal "i" after many months of hard exercises, we were overjoyed. So much happiness over one little sound!

We visited our cousin Tina and saw the result of years of rehabilitation from a different aspect. Tina has a university degree, but she and her parents had to travel a long and difficult path to get to this. They did not settle for the options available in our country. Our young cousin and her husband who also has a serious hearing defect became role models for us as well as examples of successful hearing and speech rehabilitation, but also of hard and persistent work. As we considered our options, we always kept them in mind, and their words, speech and the tone of their voices echoed in our ears for a long time. We started to set our criteria and goals with their achievements in mind. However, they are both above average. What if our daughter's abilities prove to be average, or even below?

Other Methods

We were not satisfied with only two hours of rehabilitation per week at SUVAG, although we also worked with Ana at home, according to our audiorehabilitation specialist's instructions. We were aware that rehabilitation was a long process, but we refused to settle for some statistic prognoses that indicated that our daughter would at best handle about 150 words before she starts elementary school and that by the time she reaches high school, she would actually be half-literate (and deaf). Reading material that could shed some light on the problem and provide us with practical advice was scarce, in fact almost nonexistent. We were astonished that there were no rehabilitation programs for children under the age of three, although for decades Zagreb has had a worldwide reputation of being the expert center in this field. Other ways had to be found.

One of our first attempts to create a simple additional program of sound awareness was based on music. We hoped that a beneficial effect of music, particularly vocal, might find its way to Ana through stimuli and senses other than hearing. We purchased high-quality amplifiers and head phones and played classical music for Ana, in order to provide some quality sound for any possible hearing ability. We mainly played Mozart, as my sister, who is a musicologist, suggested. We were very cautious about the sound's intensity and volume, because excessively loud sounds can be dangerous. However, there were no observable reactions.

Suzana, Ana, and Mozart, 1997

Ana was introduced to headphones and microphones at SUVAG, and the exercises became a game that she kept up for a long time to come. She saw the microphones being used on TV music shows and she gave voiceless impersonations of pop singers, bringing the microphone to her mouth and pretending to sing.

As we searched for other solutions, a friend of mine, who is a doctor, referred us to the wife of one of his patients who worked with deaf children in Italy, and also spent certain periods of time in Zagreb. We were cautious about everything, particularly about the great successes of which we had no hard evidence or relevant data. However, we wanted to try it out. Thus we met Dr. Zora Drezancic, an audio-rehabilitation expert with international reputation, who, after working for SUVAG, worked independently throughout Europe – in France, Belgium and Switzerland – where she developed her own method. She continued her career in Italy, where she gathered young people and deaf children's parents at several centers, where they were taught by her and worked on the rehabilitation. She received a prestigious Italian order for her work.

The methods which Dr. Drezancic uses to build a path to hearing and speech development are fundamentally different from those used at SUVAG. It is a different philosophy, although it sprang from the same source. Music is an important factor in her method. We read her rehabilitation projects for small children, some of which are still unpublished, as well as the published books and manuals that she wrote, unfortunately, mostly in Italy. We found out she had a rehabilitation program for infants younger than our daughter. This was an encouragement. She could not find a publisher for her works in Croatia. We kept up-to-date with the presentations she gave at many conferences. She also taught us about foundations, the development and certain turning points and possible future directions of the verbotonal method. It was an interesting and stimulating but above all informative experience.

Dr. Zora Drezancic, who is today a lady of age, is a special and vital person whose approach and energy immediately grabbed Ana's attention (and ours). Every time she pays a short visit to Zagreb, she has intensive sessions with Ana. Her didactic toys and objects she uses in rehabilitation are made of simple, handy and natural materials, which Ana likes. We carefully monitored the process to make sure it did not clash with the SUVAG rehabilitation program. On the contrary, the two methods seemed to complement each other. Although the sessions were sporadic, the results were evident. When we were in the car, we would often notice Ana doing Aunt Zora's rhythmical exercises, trying to pronounce individual vocals. It seems that her voice is well set. We are grateful to Aunt Zora for the generous efforts she invested and still invests in Ana's development.

Suzana, dr. Drežančić and Ana, 1999.

It was not easy to coordinate new demands that we set for ourselves and for Ana. This kind of work requires an organized and planned living and working schedules. In the profession that my wife and I have, we often have no idea what the next day will look like and coordinating our irregular working schedules is almost an impossible task. Although we are rather free to make our own schedules, our job requires 24-hour-a-day involvement without any order or plan. Having a baby imposes certain obligations in any situation, and for us it also meant having to go for daily checkups, rehabilitation and treatment sessions, as well as other medical examinations, sometimes even twice a day. We had to turn to other family members for help. Since we live about 10 km from the city center, and Ana's grandmother lives a further 10 km away, we often traveled 60 km in one day. Specifically, we sometimes went downtown twice in a day and then took the baby to her Grandmother's or picked her up in the morning. It was an exhausting schedule for all of us, not just for Ana.

However, we wanted and strove for more.

Searching for the Cochlear Implant

The information available on the cochlear implant was vague and scarce. The very name "artificial cochlea" is misleading. Since we were dealing with a number of problems, we expected that as we continued we would get more information. We believed that the implant was in fact an artificial organ, but it was really a different thing and it would be better to call it, tentatively, "the electronic concatenation between the artificial ear and hearing sense", or "hearing prosthesis". We asked the professionals who handled our daughter's case about it, but we got vague answers. The most frequent response was that it was not the right solution for her and that we should work on developing the remains of her hearing ability. Because of this, we stopped looking for a solution for a while. We were confused by the negative attitude expressed by almost anybody to whom we mentioned "the artificial cochlea". We could not get the names and addresses of experts or references that could give us more information. Everyone acted as if it was the ultimate fact and there was nothing more to say.

It took a long time to get all the pieces together and to understand something that can be described and grasped within minutes. The first pictures and photocopies of the implant that I saw were of such poor quality that I instantly felt put off, because I looked at the image the wrong way. Also, they said nothing about the system's efficiency and prognosis. All we saw was a sort of cable attached to a person's head. After a while, we found some written material covering the technological, but not rehabilitation aspects of the implant. Besides studying the literature, we needed to see the system's application and efficiency.

By chance, a friend told us that her doctor had a five-year old boy with a cochlear implant. We called the boy's parents and they invited us to visit them at their home. Little Antonio was operated on in Germany and was undergoing the rehabilitation program at SUVAG. His grandmother read about the implant in a newspaper article that encouraged the parents to decide to have him operated. They told us about their experience and gave us the first cochlear implant brochures we ever saw. When we saw Antonio turn around at the sound of his name, we instantly decided that it was the right thing for our daughter. This was the first useful information we got. The objections they had about the rehabilitation system were quite foreign to us, but when we began to face the same problems they helped us in our hard struggle to improve the conditions of rehabilitation of children with cochlear implants. It was a win-some, lose-some struggle. If someone from expert circles had made an effort to talk to Antonio's parents, they could have learned a great deal and made things easier for us and other parents with the same problem. We are very grateful to Antonio's parents.

When we saw some of the benefits that the cochlear implant brings, we arranged a meeting with Professor Boris Pegan, an ORL specialist who, as we heard, had performed several such surgeries. We finally reached him in the summer of 1998 through our family and professional connections. He gave us a positive opinion and advised us to go abroad for surgery, because Ana, who was eighteen months old at the time, was too young for such surgery under the standards of Zagreb hospitals. They would not operate until a child is three years old. That would imply missing another eighteen months of the most precious time in a child's speech development.

Ana was already 19 months old, and a year had passed since we first found out she was deaf. We watched the progress of Ana's hearing peers, even though children could not be compared in every aspect and their abilities taken as a standard. Some children make fast progress, others progress more slowly. Although we were aware of this, we began to notice that our daughter was lagging behind in communication and comprehension. Signs and natural gesticulation were no longer enough for her. She needed more and so did we.

At that time we met Matija, six months older than Ana, and his parents who are both doctors and were going through the same process as us. It was of great benefit because we could exchange information, but also encourage and support each other's decision which nobody, except for Dr. Pegan, seemed to approve. We realized that Dr. Pegan was an ORL specialist and OTO surgeon and was speaking from his point of view, but we also wanted to know what the speech and hearing rehabilitation experts had to say on the subject. Sadly, they had nothing to say.

Rays of hope began to appear. It was easier to orientate towards a solution. We heard that the device cost about 35,000 DEM, but that the Croatian Health Insurance Institute would not cover the expenses of purchasing such device. We spoke to the Minister of Health, my acquaintance and colleague from the University, who confirmed the information to my sister and politely rejected the possibility of purchasing the device through the health care system. We would even have to pay VAT. The Croatian health care structure was not open to the idea that the deaf could regain hearing. We were willing to sell everything, borrow money and ask our immediate and remote family for help. Our family completely supported us in this aspect as well.

Time for Decisions

My wife, who had received the Fulbright Scholarship, was preparing to go to New York, which she had postponed when Ana was born. While she was getting ready for her journey, she searched for useful addresses in America where she could learn more about rehabilitation methods for hearing-impaired children and the cochlear implant.

We also consulted Dr. Marn, with whom we maintained contact. He gave us the business card of Dr. Noel Cohen from New York University Medical Center, whom he had met during a medical conference in Jerusalem. It was almost a prophetic thing. After all, that very summer, after I visited Christ's Tomb in Jerusalem, I left a written prayer for Ana at the Wailing Wall, according to the tradition. I left a small piece of paper with the prayer in a slot between large stone blocks of the Western Wall, which is the foundation of the remains of the ancient Jerusalem Temple.

Prayer for Ana, Jerusalem, 1998

We went to the seaside in order to spend some family time in peace and quiet, before being separated for a long time. We chose Jelsa on the island of Hvar as our destination. Ana was a year and a half and started to show more evident communication problems, especially in the new environment. However, she soon adapted to it. While enjoying our stay in friends' home situated within a beautiful garden and pine woods near the sea, we speculated whether it would be a good option for me and Ana to go to America as well. However, we postponed making the final decision until autumn.

We pondered the pros and cons of my and Ana's coming to America. In any case, it was not likely that we would get quality information on cochlear implantation in Zagreb. If we could get relevant information and facts on other options, it would be a waste of time to stay in Zagreb just for the two hours of rehabilitation we had at SUVAG. There was also the question of money. Would it be wiser to save the money or to spend it on the trip to America? How will her mother's three-month absence affect Ana?

Although we set the implantation as our goal, we constantly reconsidered whether we should let nature take its course and develop Ana's abilities by standard methods. However, after seeing a solitary example of successful implantation and reading some relevant literature, we made a conscious decision to go ahead with the surgery and undertake all efforts to make it possible. We left for America to get the information that would determine our next steps.

[1] Systeme Universel Verbonotal d'Audition Guberina - System of universal verbonotal listening Guberina