Open-air meeting and scientific conference in Kajetany

On the 30th  anniversary of the first cochlear implantation in a deaf person in Poland and the 20th  anniversary of the world’s first surgery to restore hearing to a patient with partial deafness conducted by Prof. Henryk Skarżyński, patients, hearing-implants users met in Kajetany. Together with their families, they participated in an open-air meeting combined with the 8th  Scientific Conference “Music in Human Auditory Development.”

– July 16 is the day that takes me and my team back to 1992 when I performed the first cochlear implantation in Poland in a deaf person. This year marks the round 30th anniversary of that extraordinary event. We waited 30 years for such a special anniversary, but we did not just wait idly. We did everything possible. It was 30 years of great activity, work, passion, and presenting our abilities and skills. We recorded a great deal of these events to show that we did not stand still and lived up to many expectations. Within a few weeks after this surgery, a nucleus of an interdisciplinary team was formed, including psychologists, speech therapists, educators, clinical engineers, and technicians. We have learned to look holistically at the other person. We collaborated, worked to improve ourselves, and step by step, we moved forward. Our success is collective, and if someone becomes a leader, it is only to make them aware of their greater responsibility for what has happened over the years and for what is happening now – said Prof. Henryk Skarżyński welcoming patients who came to Kajetany to meet with the Institute’s team.

Meeting of specialists with patients

– Why are these meetings so important? Because we are one big family. Because these meetings break down barriers and make us all stronger. Because they make patients – users of hearing implants who need our attention and care throughout their lives – feel at home at the Institute, Professor Skarżyński stressed. Dr. Elżbieta Włodarczyk, head of the Rehabilitation Department, also spoke about the uniqueness of these meetings: – We value such meetings with patients very much. It is touching to see how they grow and what new opportunities present to them. During the conference, Dr. Włodarczyk explained the implant qualification procedure. She said it involves a multi-specialist group – doctors, speech therapists, psychologists, educators, clinical engineers, technicians, and prosthetists. She presented novel treatments available to patients during rehabilitation. – We wanted to show what has changed over these 30 years from the perspective of doctors and other therapists and what new technical, surgical, and other components of the therapy process have emerged.

The conference host – Prof. Artur Lorens, head of the Department of Implants and Auditory Perception, added that during the symposium, specialists would share with patients what they deal with daily. – We are engaged in both clinical work, taking care of the patient – the user of the hearing implant – and scientific work. He said that this allows us to offer patients the latest diagnostic and therapeutic methods and ensure that patients achieve maximum hearing benefits. Referring to the surgery performed 30 years ago, he underlined that it opened a new era in otolaryngology, audiology, phoniatrics, and rehabilitation. 

The first part of the conference focused on changes over 30 years in the hearing implant program and over 20 years in the partial deafness treatment program. Patients could hear presentations prepared by specialists from the Department of Implants and Auditory Perception, the Tinnitus Department, and the Department of Rehabilitation. They spoke about technological advances in cochlear and other hearing implants, including middle ear and bone conduction devices, the next generation of speech processors based on artificial intelligence, binaural implantation, use of the induction loop, rehabilitation after hearing implants, or how to deal with tinnitus.

In the second part, among other things, it was discussed how one hears incoming sounds through the implant, choreotherapy as a language of communication, about modern telemedicine solutions used in rehabilitating children with central auditory processing disorders.

Patients speak about themselves

The specialist lectures were interspersed with speeches by patients who wanted to share their emotions and thoughts and talk about the path that led them to Kajetany to receive a hearing implant. Dr. Małgorzata Strycharz-Dudziak, MD, recalled an incredibly touching moment when she read the poem “Enchanted Piano,” written by Prof.  Henryk Skarżyński. – When I first read it, I cried. After so many years, Professor conveyed the emotions I felt then – she said. Małgosia was operated on by Prof. H. Skarżyński 28 years ago. – When I come to Kajetany every year around this time, the anniversary of the first cochlear implantation in a deaf person performed by Professor brings back also memories of my hearing loss, of the surgeries that restored the world of sounds to me. July 1992 was also a memorable month for me because that was when I completely lost my hearing. This is a symbolic event for me – I lost my hearing, and surgery was possible to restore the hearing.

Małgosia, as she says, had excellent hearing as a child; she always had an interest in music and was a student at a music school – she played the piano and flute, and sang in the choir. Hearing loss was a harrowing experience for her, although her parents and loved ones supported her during this challenging period. – In 1994, I was qualified for surgery, which was a game changer for me. Prof. Henryk Skarżyński gave me a cochlear implant. To this day, I still remember how the Professor cared for his patients; he visited them daily. He talked to them and personally changed their dressings. This will remain forever in my heart and my memory, Małgosia recalled. – After the activation of the processor, my second life began. I spent my first vacation playing the piano. It was a  natural music therapy, but I did not realize it at the time.

With the implant, Małgosia passed her high school examination, was admitted to the dentistry department at the medical academy, then into doctoral studies, and got a job at the Medical University of Lublin. – After Professor placed the second implant, I again felt that my life had changed and that I had entered another stage. My sound world has expanded significantly, especially when it comes to high-pitched sounds, I also know where the sound is coming from, and hearing has become three-dimensional. I feel that my hearing is still developing, and that is amazing. At work, I am a teacher, a doctor, and sometimes an English translator. In conclusion, I can add that I can’t imagine life without implants; I’m just lucky that I have them and that I came across such people as Professor and such a place as Kajetany.

Drawing, then painting, became her great passion. She graduated from the Faculty of Painting at the Academy of Fine Arts in Cracow and came to Kajetany with her collection of paintings. Currently, Joanna Turek is deepening her knowledge at the Faculty of Graphic Arts. She says about herself that she is an artistic soul. Joanna mentioned that as a deaf person, she had to take on many challenges to get to where she is now. It cost her a lot of work, but it was worth it. She believes that the most important thing in life is to be yourself and not pretend to be anyone else. She stressed that she owed this thinking to her parents and all the people who believed in her and supported her.

Joanna has been unable to hear since birth; she has profound hearing loss. – I remember precisely when my dad asked me if I wanted an implant in the second grade of elementary school, and I immediately said yes. Even then, I felt that this moment could change everything. Before the surgery, I communicated only with gestures and drawings. After the implant, I began to speak better, and I also discovered the mysterious, unusual world of music, which I had not known until then, Joanna said during her speech. – After a year, I noticed that the implant had changed me. I could feel both the world of silence and the world of sounds. For me, as an artist, these two worlds are vital because each has its own emotions that complement the other.

For Joanna, a breakthrough event was a trip to Glasgow, Scotland. As she admits, it was a real lesson in self-reliance for her, and she also had to communicate in English there. She returned from that trip uplifted and with greater confidence in her abilities. To this day, she still has pen pals from Japan, Canada, and India. Her dream is to create a group of hearing and deaf artists from around the world and to organize an exhibition of works to which she would like to invite art lovers from the World Hearing Center. This would be a way of thanking them for their talent, their passion for their work, and the heart they show to their patients. Joanna directed special thanks to Prof. Henryk Skarżyński for enabling her to experience the world of sounds.

The world of sounds, of music, is dear to Estera Łabiga, another patient who, thanks to Prof. Henryk Skarżyński and the implantation, graduated from a music school. – Twenty years ago, I met Professor and his team of doctors and rehabilitators, who with great care helped me regain my ability to hear and also learn about myself and the reality around me – said Estera.

Estera hadn’t been able to hear since birth, but it wasn’t until she was five years old that she ended up at the Institute of Physiology and Pathology of Hearing. Before that, no one could help her, although her parents traveled with her almost all over the country, visiting every specialist possible. At eight, she received the desired cochlear implant, which proved invaluable to her. After a long and intensive rehabilitation process in which many people were involved, her hearing developed, as she put it, “exponentially.” Thanks to the music school and the classes, her hearing improved steadily. Together with her siblings and parents, Estera repeatedly performed at various celebrations. Estera also mentioned the Institute’s role in her musical development, allowing her to participate in multiple music workshops, festivals, and concerts. Estera also participated in a casting audition (successfully) for the musical “Interrupted Silence” staged at the Artistic Pool of the Warsaw Chamber Opera, with the libretto written by Prof. Henryk Skarżyński. – While performing on stage, I learned how to deal with stage fright and cooperate with other musicians. I met many people there, talked to them, and it motivated me to work. If there were failures, they only strengthened my character – she recalls that time and adds – thanks to  Professor, I was also able to take part in the first edition of the Beats of Cochlea Festival, which I think of with emotion, and I will never forget it. After that, she gave many guest performances at the Festival.

As she points out, the implant enabled her to graduate from landscape architecture at the Catholic University of Lublin. Estera enjoys sports and photography; her English knowledge makes her travels possible.

The next speaker was Weronika Niczyporuk, a patient of the Institute of Physiology and Pathology of Hearing since 2002. She talked about the many difficulties she had to overcome, the unpleasant situations associated with the hearing impairment that excluded her from ordinary life, and her struggle not to be marginalized for her “imperfection.” Her speech touched many people but also led them to understand how much depends on our attitude and mindset.

Weronika was born with bilateral microtia and ear canal atresia; she has been using a bone-conduction hearing implant for 20 years. Now, she studies psychology at the University of Warsaw and has performed on many national and international stages. Thanks to her long and intensive rehabilitation, few people know that she has hearing problems. But before that happened, before she got to Kajetany, Weronika received a diagnosis that she would never hear or speak. Her parents’ determination brought her under the care of Prof.  Henryk Skarżyński. – Professor presented my situation in a completely different light and gave us something that no other doctor had given us – he gave us hope. He showed us a way forward that would allow me to enjoy life like any other person – said Weronika emotionally. – In this way, I became the first child in the country to benefit from a bone conduction implant placed on a band.

Weronika drew the most critical conclusion from her parents’ stories about her childhood – nothing is impossible, and limitations exist only in our minds. – Despite my hearing impairment, I never had a special education certificate, she stressed. – I have always enjoyed school, learning, and interacting with other children. I have always worked under the same terms as healthy children and never received more lenient treatment.

The most challenging time for Weronika was middle school. She felt misunderstood by her peers, their sensibilities and world were completely different from hers. Another blow was the matriculation exam; she was refused entry with the implant – it was compared to a cell phone, through which one can cheat during the exam. – The fact that I couldn’t take the matriculation exam under the same conditions as I enjoyed during high school hurt me a lot. I had to provide a disability certificate, Weronika said sadly.

Weronika did not give up; she proved she was a fighter, and her matriculation exam results were among the best in the whole school.

Weronika applied for four majors at the University of Warsaw and was accepted to all of them – she eventually chose psychology. She also stressed that an essential part of her development has always been, is, and will be music. At the age of six, she joined the Małe Podlasie folk ensemble, but the professional world of music was shown to her by the “Beats of Cochlea” Festival, whose originator is Prof. Henryk Skarżyński. – This was the beginning of my artistic path. Thanks to the Festival, I met many outstanding people who greatly influenced me. Finding out that I have musical talent uplifted me and was something extraordinary. 

As the  Festival winner in 2016, Weronika has been invited to participate in many concerts and festivals, including the 52nd Jan Kiepura Festival in Krynica-Zdrój. Prof. Ryszard Karczykowski convinced her to pursue vocal training. She also stressed that she had always received tremendous support from Prof. Henryk Skarżyński, who followed all her musical successes.

 – In 2019, I fulfilled my musical dream; after an audition, I received a role in the “Interrupted Silence.” During rehearsals for the show, I once again proved to myself that I could overcome many barriers, Weronika said. – Thanks to the theater, I discovered another Weronika in myself – Weronika, for whom nothing is impossible.

Concluding her speech, Veronika quoted the definition of an “angel,” emphasizing that he fulfills God’s designs in various ways and that every person can be one. Her angel is Prof. Henryk Skarżyński.

For Sebastian Turek, Prof. Henryk Skarżyński is also an extremely important person. He received two implants in Kajetany – the first at 11 and the second last year. Almost all sounds reach him now, and he communicates much better in a group. Thanks to this hearing prosthesis, he developed hearing and speech, graduated from medicine, and became a radiologist. – I am currently working at a hospital in Gliwice. I want to prove with my example that nothing is impossible and that it is possible to overcome difficulties, achieve one’s goals, and make dreams come true. I’m glad that in my profession, I can help others, just as Professor and the whole team of the World Hearing Center helped me, – he said. Sebastian also stressed the importance of family support, without which it is difficult to be a better person and start an independent life.

The support of the family, which is crucial not only during the illness, was also mentioned by the oldest of  Prof.  Henryk Skarżyński’s patients who appeared on stage – Jan Turbański,  a folk singer and musician. – After an accident at work, I gradually started to lose hearing. In 2011, I had to stop playing and singing because I could hardly hear anything, and my hearing aids were no longer sufficient. My family was very worried about me and wanted to help me. My daughter found information about Kajetany, where cochlear implantations, restoring hearing, were performed, – said Jan. And so, he was qualified for implantation and admitted to Kajetany. In 2013, Prof. Henryk Skarżyński restored his hearing, and Jan promised himself that if the opportunity arose, he would play for the Professor on the Greater Poland bagpipes. And so it happened – Jan took part in the first edition of “Beats of Cochlea” and became its laureate. After the Festival, he became even more eager to make music. He has repeatedly performed at various ceremonies organized by the World Hearing Center, and with a colleague fiddler, he participates in folk band competitions. – Currently, my granddaughter Stella plays the violin with me in the band, and the other, Zuzanna, performs chants from our region.

If it weren’t for the cochlear implant and the speech processor, I wouldn’t have such an opportunity, Jan emphasized. – My life has changed; it has returned to normality.

Olaf Kaca, another musically gifted patient of Prof. Henryk Skarzyński, is a first-year student at the Medical University of Łódź. He has been a cochlear implant user since 2004. He was a winner of the “Beats of Cochlea” and took part in many celebrations organized by the IFPS. – Professor, by implanting me, helped me because he restored my hearing. Now I want to help others, especially children with hearing problems, Olaf began his speech.

From the perspective of his 18 years of using the implant, he stressed that patients with implants should not see themselves as limited despite the communication difficulties that may sometimes arise. Building a strong psyche is fundamental, and it starts in the head. According to Olaf, you need to approach your actions with faith, optimism, and passion. You also must trust the scientists and participate in all events promoting human interaction because they allow you to keep developing speech. Olaf also gave some tips on handling the hearing processor and maintaining and caring for it. His advice is valuable because it comes from the patient’s everyday experience.

Dr. Michał Osiński is a neurosurgeon currently pursuing a second specialization in otorhinolaryngology and studying healthcare management. As he said in his introduction, he also went to music school and played the flute before he lost hearing. His hearing loss developed gradually. The first noticeable signs of a hearing problem appeared in middle school. – In fact, it wasn’t until I was in college that I learned about implants, that they exist and give good results. I wasn’t sure whether I wanted to undergo surgery, Michał recounted. – After all, I was managing somehow in life, somehow communicating with my family and friends, so I thought I would manage and not change anything. However, when I decided to become a neurosurgeon, I knew that in the operating room, you need good communication; it is essential there. Then I decided to get an implant. I reconciled myself to the fact that there would be some visible external part. I am happy with this decision; I know I did the right thing. I received the implant in Kajetany. This device certainly made my daily life easier. My hard-of-hearing patients ask if it was worth it. I always say yes, it was. I also decided on this implant for their sake so that I could do my job better. Of course, the implant has some disadvantages, but it’s not worth mentioning them because the advantages are far more significant. And there is no question about it – for the hearing impaired, it is the best solution at the moment.

Roksana Pijet has two cochlear implants. She underwent two implant surgeries very early in her life. She admitted that she doesn’t remember that period when she couldn’t hear. – However, I know that if Prof. Henryk Skarżyński had not initiated the deafness treatment program, nothing would have been the same, she stressed. – I owe everything to the cochlear implants. If it weren’t for them, I wouldn’t have gone to public school; I wouldn’t have learned to speak Polish and English fluently. I wouldn’t have dared to want more, to reach further, to follow my dreams, to be as ambitious as I am, and to take risks. I would not have met many people, experienced many things, and would not fit so well into society. Roksana added that the implants enable her to live normally, like any hearing person. She attends one of the best high schools in Poland, a class with a mathematics, physics, and information technology profile. She lives in a boarding school, learns independence, feels comfortable there, and has many friends. She is considering going to a university of technology in the future and would also like to study abroad. She enjoys listening to music; it relaxes her. Music is a particular form of entertainment for her; it makes her happy. – I can listen to my favorite songs thanks to the implants. They also help me make my dreams come true. I can do it because I don’t feel any limitations. I can decide my own destiny – concluded Roksana.

Anna Czupryn is also fulfilling her dreams: – I am a musician, a professional and fulfilled violinist who graduated from the Academy of Music in Katowice in the violin class.

Ania’s life has been filled with folk music since childhood, which is why she became involved with it. She and her husband perform in the folk band Tekla Klebenica, founded by him, which plays Polish, Slovak, Hungarian, and Gypsy folk music combined with classical and jazz notes. Since 2006 Ania has been the lead violinist and vocalist. She has enjoyed many successes with the band. They have released several albums and toured in 20 countries on four continents.

In 2017, Ania stressed, something groundbreaking happened. – I called it my little miracle – I received a hearing implant. I was born with a defect in my left ear. I had microtia and canal atresia – she recalled. – Although I have been playing the violin for 27 years, it was only five years ago that I was given the opportunity to hear music in stereo, multi-dimensionally. Thanks to the bone conduction implant placed by Prof. Henryk Skarżyński, I heard sounds from the left side for the first time. Since then, I have been able to experience music anew.

Ania has noticed how her life comfort has changed. She feels it daily while doing ordinary activities, such as talking to someone. – I can say with all responsibility that it was worth making such a decision and opening up to the possibilities offered by a hearing implant. Now I can localize sounds; they reach me from all sides, and sounds have gained spatiality and dynamics – I could not experience it when I was hearing with one ear. I began to cope better when performing in more difficult acoustic conditions, such as in large halls with echo and reverberation. When we play, I can also hear any instrument I can locate without turning my head toward it. I feel much more confident on stage.

Shortly after her implantation, Ania won the “Beats of Cochlea” Festival. After that, she performed at many events important for the Institute of Physiology and Pathology of Hearing. In 2018, she also played at a session of the European Parliament in Brussels and performed in a duet with violin master Vadim Brodsky.

Concluding her speech, Ania stressed that music education accelerates auditory development, and sound awareness speeds up post-operative rehabilitation. Music education should be present in every person’s life, especially those with hearing impairment. She added that the implant was a miracle of technology for her and thanked Prof. Henryk Skarżyński and the entire team at the World Hearing Center that she was able to receive it.

All the patients speaking at the conference were united by one person and one place: Prof. Henryk Skarżyński and Kajetany. They promised to return here because their new life started here.

Accompanying attractions

The scientific conference was accompanied by numerous attractions, including an exhibition of paintings “Between Worlds” by one of the Institute’s patients, Joanna Turek, an implant user who graduated from the Academy of Fine Arts in Cracow. Children’s entertainers awaited the youngest – they had fun with colorful painted tattoos and soap bubbles. Older children could check out the Mobile Sensory Examination Capsule, a unique, multifunctional device that allows diagnostics of the most important senses in one place. It enables to independently perform screening tests of hearing, vision, smell, taste, and balance. It was created on the initiative of Prof. Henryk Skarżyński with the support of top specialists in otolaryngology, audiology, ophthalmology, biomedical engineering, materials science, and telemedicine. The Capsule’s central system is a unique solution that allows cooperation with the Patient Portal. The patient can register independently from any place using a computer, tablet, or smartphone with Internet access. On the Patient Portal, users create an account where they can check the results of individual tests.

Taste and smell screening tests were extremely popular among visitors who could perform them independently with the intuitive Taste and Smell Test app. The olfactory test kit consists of a single-sided printed envelope containing an olfactory test in the form of six strips with a designated area painted with a scent paint. The Taste Test Kit is a single-sided printed envelope containing a taste test consisting of 5 strips – one tasteless and 4 soaked in flavor solutions commonly used in the kitchen.

The Taste and Smell Test is easy for everyone to perform anywhere and at any time. It takes only several minutes to complete, and the user gets an immediate result. This innovative tool is a valuable complementary diagnostic tool and allows early detection of various symptoms in patients at risk of developing many conditions: otorhinolaryngological, neurodegenerative, psychiatric, or oncological.

Patients were also able to browse through the Institute’s many publications, and they could also order them. Throughout the event, there were screenings of films from the final concerts of the previous editions of the “Beats of Cochlea” Festival, as well as a screening of the documentary film “My Moonlight Sonata,” directed by Barbara Kaczyńska, the Festival’s Artistic Director. It is the story of Grzegorz Płonka, one of the World Hearing Center’s most musically gifted patients.

At the end, Prof. Henryk Skarżyński thanked all who came to Kajetany on this meaningful for the Institute day to rejoice together in their regained hearing. The meeting participants were captured in a group photo, posing in front of the main entrance to the World Hearing Center. This year, unlike five and ten years ago, there was no attempt to set a Guinness World Record, but almost every patient, a hearing implant user, sets such records repeatedly in their everyday life.