The New Beginning

First Fitting in Croatia

Upon our return to Croatia, our high standards needed to be toned down, because nothing had changed since we left. Our friends in Zagreb who struggled to make the surgery possible had made no visible progress so far. The system was too resistant, and people kept saying that this surgery was not yet fully developed anywhere in the world. They tried to convince us of this, even though we had just returned after having the surgery done.

We resumed the rehabilitation. The rehabilitation facilitating Ana's progress and the fitting of the speech processor were mutually dependent. Cooperation with the individual rehabilitation specialist is crucial to the successful fitting, as is consulting the parents, because any remarks about the results of the new program system, possible disturbances, as well as improvements in-between fittings should be taken into account and the program should be corrected and fitted accordingly.

During our stay in New York, we made inquiries whether it would be possible to fit the speech processor in Zagreb or would we have to go abroad every month or two. The answer was positive. However, the situation in Zagreb was different, which worried us a bit. Ana was the first user of Nucleus® 24 Cochlear Implant System and therefore had to wait until the program support for this particular model of speech processor was entered into the computer. Finally, we had to wait for an expert to do the task, again because this was a new program in Zagreb. Professor Branka Sindija from SUVAG, where the Cochlear equipment donated to the Hospital of the Sisters of Charity was stored, coordinated the preparations for the first fitting of Ana's speech processor. The fitting could not have been done at SUVAG, because there was no space for the new program in the computer where the programs for Nucleus® 22 and MED-EL were already saved.

Suzana, Ana, ing. Tichi, prof. Zlatarić, prof. Šindija

Mr. Tichi, an expert of the Cochlear company, who would run the new program arrived from Prague. A standard PC equipped with Cochlear's card and appliances was put in a guest room of the Hospital of the Sisters of Charity. Professor Zlataric brought toys and didactic jigsaw puzzles that, through a playful activity, motivate the child to demonstrate reactions to the computer signals, namely the sounds. It was here, on a gray and wet morning, as the cleaning ladies went in and out of the room, that the first programming of the Nucleus® 24 system ever done in Zagreb was performed. Not very encouraging, but successful.

Once the problems connected with the computer were solved, in which we were also involved (which is another story), the fitting of the speech processor was continued at SUVAG. The first couple of times, it was done under the supervision of Mr. Tichi who visited Zagreb on his way to Slovenia and later Professor Branka Sindija from SUVAG took over. During one fitting, which is a very delicate task requiring precision and concentration, and is also a very personal medical procedure, a group of fifteen European verbotonal tourists visiting SUVAG came in and started to watch what was going on with great interest, to the great disapproval of Mr. Tichi and Professor Sindija and to our indignation. After they satisfied their curiosity, they calmly walked out.

In the summer of 1999, in accordance with the processor fitting plan, a new Cochlear's programming strategy called ACE [3] was applied, replacing the previous SPEAK strategy. We believe that it yielded better results in development and Ana's progress. Today we have fittings consisting of tiny and precise shifts and fine-tuning of the processor every two months. The frequency range and the stimulation intensity are expanded and some electrodes that earlier seemed to disturb the performance were re-introduced. The programs are designed in specific versions for "normal", "soft" and "loud" situations. However, due to the fast and strenuous pace of living, it is not convenient to switch between options all the time. We switch from the standard, "normal" program to another only when Ana complains that something is wrong. She is not able to describe the performance on her own yet, but the time will come for that too.

What are the Effects of the Cochlear Implant and the Speech Processor?

Even though you see your child's progress every day, you have constant doubts about the system's efficiency. A complex system of frequencies, multi-channel electrodes, upper and lower thresholds of stimuli, sensitivity and a number of other parameters cannot indicate whether the child can hear.

You get used to the fact that she responds to noises and sounds, voices and music, namely the sonic environment surrounding her. The sounds can be louder or softer, noisier or gentler. You are, however, interested in the sound quality that she perceives. You soon see her responding strongly to an unpleasant sound, either by fear, sharp motion, crying or switching off the contact between the transmitter and the receiver. When she notices the birds' soft singing during a walk in the park, it brings you great joy. After a while, you can tell that these sounds bring her pleasure (musical or psychological one) when she draws your attention to the chirping: "Daddy, listen to the birdies".

Audiograms without the implant and with the cochlear implant [large image]

The only objective indicator of how much she can hear is the audiogram. To read it, one certainly needs to have certain knowledge of the sound volume and the ranges of speech and other frequencies. However, even a visual comparison is indicative. Comparing Ana's audiograms before and after surgery gave me an objective picture. Although it still does not indicate that Ana's hearing is as good as mine or explain how she can hear at all, it tells me that she indeed can hear and how much. Naturally, the range of her hearing is narrowed and to what extent she would be able to enjoy music one day is another question. However, these are my lay reflections and attitudes.

Audiograms without the implant and with the cochlear implant - Audiogram1i2.bmp

Getting Used to the Speech Processor

During the first month after the surgery, we increased the speech processor parameters relating to the force of the stimulation and the sensitivity of the microphone. This increase was done by one grade daily, on a scale from 3 to 9, for four programs graded by their force and sensitivity. Within this month, we went through all four programs, from the weakest to the strongest (under the fitting conditions that we had at the time). After that, we had our first fitting in Croatia and amended the set programs. Now, we were able to choose between several set programs intended for different situations. The programs, which should initially be fitted once a month, are intended for noisy, as well as for "normal" and "soft" environments.

The only difference we noticed in Ana during the first postoperative month was abundant digestive reaction, which stabilized after a couple of weeks. Since she was otherwise healthy and her diet had not changed, we were worried. The audiologists we contacted could not explain this. Later, we interpreted this as a post-traumatic shock, a strong physical and physiological response to an unknown and unpleasant sensation. We did not notice any reactions to sound, except for those she exhibited at the fitting. It took a long time, even several months, before Ana could relate the signals to the real sounds in her environment and their meanings. We were constantly concerned and feared if everything was well.

During the first months, Ana often refused to use the speech processor. She would not allow us to put the processor into her pocket or the bag and, even if we did put it there, she would simply take of the transmitter, namely the coil, and thus switched it off. This was not a matter of too strong impulses or program or too aggressive and noisy environment. She did not like to feel the coil on her head. Often, she would demand that the processor be put in a different place than the last time, so sometimes we put it in the pocket and other times in the bag. We were concerned about this, but our slow, cautious and persistent approach and positive attitude towards the device and its advantages taught Ana that the processor, which we called "the little machine", was a part of her reality. When we switched on the processor, we spoke to her in a gentle tone of voice, so she would not associate the processor with something unpleasant. We kept this habit to this day. Her day actually begins with her mother's voice softly calling her and saying kind words. "Ana..."

In the beginning, we would switch the device on at the minimum force and then increase it to the optimum force after 5 to 10 minutes. We carefully protected her from sudden and loud bursts of unpleasant sound, particularly the noise of pouring water. Even today, Ana takes off the coil as soon as she suspects that someone is about to flush the toilet. Lately she does not seem to be bothered by it anymore, but she still has this habit. We heard that other children were very annoyed even by the sound of water dripping from a tap. She never seemed to mind riding in our noisy car, except for the overly loud radio playing aggressive music in which case, she would simply take the coil off her head. Later, when she learned some basic words, she would sometimes start to cry and scream, "Don't... it hurts", and even later, "Loud... too much... don't".

Today, she virtually always wants to wear her "little machine", except for the first twenty minutes after she wakes up. She spends this time in peace, playing on her own with her toys. When she wakes up on her own, without us interrupting her sleep, she is happy and playful and agrees to have the device put on a little earlier. I understand her need for silence, because I am not so sociable either before I have had my morning coffee. After she has her evening bath, she also likes to have some quiet time. She is very lively and active, full of energy, but she does not want "the little machine". Only after a while, when she feels like watching cartoons, The Jungle Book, Snow White, Tarzan or Cinderella, she eagerly reaches for the speech processor again. The time Ana spends in silence always reminds us of Caitlin, the first girl who got a cochlear implant, who is today already a young woman. Dr. Cohen also operated on her. She said that switching on the speech processor in the morning was always a shock and that she often enjoyed the soothing effect of silence. However, she is very happy to have the processor. We never noticed such shock or resistance in Ana, but we are still cautious.

Some Practical Problems

What is the best way to wear the speech processor? This has been, and still remains, the big issue. Initially, she did not want to carry a bag on her back, which is the best way for a child to wear the processor. We sew pockets onto her undershirts, T-shirts and bodysuits. Since she rolls over when she plays, the processor would fall out so we closed the pocket with Velcro. When sitting in the car, the processor would press on her spine and made her back sore. Before long, Ana learned which sitting position was the most comfortable for her back. However, the question remained whether this position was good for her spine. When she fell asleep with the device on her back, she assumed a position which seemed unnatural and which was certainly bad for her spine. Therefore, we moved the pocket to the lateral side, but the T-shirt was hanging down on that side and, besides, she had easier access to the processor, which could result in unwanted interventions. Wearing the processor on the chest was not an aesthetical solution and Ana did not like it. When she grows up, she will probably wear it on her belt. For now, even though it is not the perfect solution, we alternate putting it in the back pocket and in the small back bag with shoulder straps.

Even the state-of-the-art technology can break down, including the speech processor. You can have problems with it, just like with your PC or the software. Over the past couple of months, the program on the processor got erased twice. Electronic interference, a discharge of static electricity or some other electronic, computer-related inconvenience may have caused this. The processor broke down as a result. This was a mute period, the child was deaf and could not communicate with us through speaking and listening. Ana had a hard time dealing with this and so did we. She spoke, but she had to "listen" by lip-reading, in which she was very skillful. The first time it happened, she was in Belgium and it took two days to fax the scripts for programming the speech processor and to enter the program again. This mute period got her worried. The second time, she was in Zagreb, and the whole repair process took only a couple of hours, but she could hardly stand it. It makes you deeply sad to hear your child saying, "Dad, I can't hear anything". After this, we made a habit to take the programming scripts with us whenever we traveled abroad with her.

You should never forget that your child is deaf and that her hearing ability depends solely on the device. The device can break down. You always have to check whether a cable is disconnected, the batteries are flat, the coil may have lost contact with the receiver, the magnet may have lost power and the coil slipped off her head, the device may have been switched off, etc. One should always be aware of possible problems and not just assume that the child can hear you all the time. Sometimes there is nothing wrong, but the child still does not respond to you. This can be upsetting. However, you should not forget that she is just a child and maybe does not want to answer or is absorbed in a game. I feel ridiculous constantly asking, "Can you hear me?" or even sillier, "Do you have batteries?"

The batteries are a weak point of the entire system, the need for daily maintenance, their weight that makes the device heavier. It took a long time before Ana started to signal that the batteries were flat and we sometimes inadvertently left her without sound for a while. Replacing and maintaining the batteries implied certain problems. We sometimes bought batteries made by an unknown and unreliable manufacturer, which resulted in Ana losing sound at an unexpected moment. We then opted for the most expensive but also the safest solution. Initially, when the device was loaded with one AA 1.5 V battery, we bought batteries from Duracell. We replaced the battery every two or three days.

Later, when we switched to a more complex program and programic strategies supported by the speech processor, we needed more batteries and had to put two AA 1.5 V Duracell batteries, which lasted only two days. This was too expensive so we switched to accumulator batteries, which need recharging every morning. They last a little longer than one day, but it is inconvenient to wait until they are flat, because it is not possible to recharge them at any time and place. It is particularly difficult while the child is at the kindergarten. We always try to have spare batteries with us, although we sometimes forget them.

However, Ana does not always say, "The batteries are flat" immediately. She probably wants some silence or is absorbed in a game and signals that they need to be recharged only later. However, when she says, "I can't hear, the batteries are flat", you feel ashamed, because it was your job to recharge the batteries and you forgot to do it.

How do we wake Ana up? It is not possible to do it by voice and every parent knows that child sometimes needs to be persuaded to get up. Sometimes, when she is still half-asleep, we put on her "little machine" and speak softly to wake her up, but we do not dare to do this very often. Stroking, gentle massage and tickling are some of our waking-up methods, but she enjoys this and it takes a while before she agrees to get up. In any case, she is a sleepyhead. Sometimes, these methods do not work. After we insist for a while, she gets up grumpily and then refuses the speech processor for quite some time.

Petty things can make your life difficult. Sometimes you must have the device repaired or you need a spare part that you cannot get through semi-private channels, such as the praiseworthy kindness of individuals employed at the relevant institution. In this case, you have to contact the main office in Switzerland. When you request that the relevant institution establish a normal business relationship with the manufacturer of the equipment that both you and them use, the answer is that they do not have a contract with the manufacturer, but are only doing you a favor. This is a surprising attitude.

Being faced with the numerous problems associated with issues of the status and rehabilitation of children with cochlear implants prompted us to found the Association of the Parents of Children with Cochlear Implants.

[3] Advanced Combination Encoders