Johannes Beyer

(Interview with Johannes Beyer’s mother, at that time the youngest child in the world to receive a cochlear implant, operation performed in Würzburg.)
Our son Johannes was born in November 2002. Routine newborn hearing screening, carried out in the hospital 2 days after his birth, indicated that deafness in both ears was suspected. This first diagnosis was a shock. However, since none of our relatives were hearing impaired, we hoped this was a mistake and that the next screening would have a better outcome. When he was 4 weeks and 6 weeks old more hearing tests and an EBERA measurement were carried out, confirming that our little Johannes was deaf. At first we could not and would not believe it. Johannes was immediately fitted with hearing aids which unfortunately were completely unsuccessful. He did not respond to noises no matter how loud they were. He only responded to visual stimuli. An examination confirmed that Johannes showed no hearing response at 120 dB.
Immediately after the first hearing screening, my husband and I had found out everything we could about deafness. During our research we came across cochlear implants. We had close contact with parents of hearing impaired children who had also been treated with cochlear implants and gave us invaluable information about their experiences. Soon we decided on an implant.
The search for a suitable Cochlear Implant Clinic didn’t prove difficult. The CI- team at Würzburg were sensitive, friendly and competent, the staff showed us all the premises including the rehabilitation facility. Contrary to another CI centre we had visited, we did not feel like a number here, but were looked after attentively and with the best medical care.
The preliminary examinations were promising. My greatest fear was that the auditory nerve was not attached which would make an implant impossible, but happily this fear was unfounded. Admittedly Johannes was still very young, but he was physically very fit and his head circumference was also large enough so that the CI team at Würzburg recommended an early implantation. Following consultation with the paediatrician, the anaesthetist and the ENT-doctor, who encouraged early treatment, we decided on the MED-EL COMBI 40+ implant.
Johannes was 4 months old when he had the operation and he got through the operation without any problems. During the short stay in hospital he cut his first tooth and learnt to turn over. The whole CI team at Würzburg were a great support to us emotionally. Professor Helms, the surgeon, immediately informed us at the end of the operation that it had gone well, taking a large weight from our shoulders.
The first fitting with the TEMPO+ took place 6 weeks later. We had longed for this day but we were fearful too. Would our little boy respond? Would he be able to hear? The audiologist in attendance played with a triangle. When Johannes heard the first sound he looked astonished and began to laugh. We were really shocked by this intense reaction from our little boy – and overjoyed ! The game repeated with each sound. When the sound of triangle could no longer be heard, Johannes also stopped laughing. Since Johannes was still so young, we had decided to space the first fitting over 3 days and the next 2 days were just as successful as the first day.
After the first fitting we went on holiday. The strain that we had still felt during our stay in Würzburg gradually faded and we watched full of joy as Johannes was able to hear his environment. Even after only a few weeks with TEMPO+ we could see his progress. Johannes dozed off and would be woken up by a loud noise and he would immediately look for the source of the noise. In the meantime Johannes has started to make sounds and babble. However without the CI he does not utter a sound.
We work intensively with Johannes and speak to him a lot. Early stimulation also makes a considerable contribution to his success. His progress with the CI has taken away our fear of deafness. Since the cause of his deafness is still not clear, a genetic cause cannot be ruled out however, we had fears about having a second pregnancy. But Johannes and his CI is giving us the courage to take this risk. If we have a second child who is perhaps also deaf, we won’t hesitate to have him or her treated with a CI.
When Johannes can walk, we would like him to be implanted on the other side as well.
We are leading a quite normal life with Johannes, go to baby swimming club and take part in lots of activities. Children with normal hearing accept him with his CI, they only want to know what Johannes is wearing on his ear and after it is explained they play with Johannes just like they would with a child with normal hearing.
I can only report that I am very enthusiastic about our MED-EL CI and would like to encourage other affected parents who are facing the same decision as we did then to have the courage to take the step and let their child be implanted.
 
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