Cochlear Implants: an alternative to being deaf
Rezi Chekurishvili was six months old when his parents noticed that he did not react to sound. Doctors diagnosed him with profound deafness, the most severe form of hearing loss and a condition in which a traditional hearing device is of no help. The only solution is a cochlear implant.
“Actually, we should have become aware of this at the maternity ward. However, we were ignorant of the hearing problem during six months,” Rezi’s mother, Irma Kiladze, recalled.
Rezi is seven years old now and has a cochlear implant. He underwent a surgical procedure at the age of two and now his hearing has fully recovered. Although it took him years to start speaking, he now lives a normal life in which he hears clearly, speaks, sings and plays with friends.
Cochlear implants allow hearing to be recovered through an array of electrodes which are placed in the cochlea. The device consists of two separate but connected elements: an internal part which is implanted through a surgical procedure and an external part, the so-called “sound processor”.
Surgery is performed primarily on children because, as practice has shown, the device is less effective when implanted at an adult age. But having this surgery does not automatically mean that hearing and speaking will be fully recovered. A long rehabilitation period is required for an implant to become effective and for the patient to fully recover his or her hearing and speaking functions.
“From the age of six months to two years, Rezi was on the waiting list for the financing of surgery. An implant costs around GEL 40,000 and, fortunately, the state provides this financing. However, this surgery is not the final step. Rather, it is only the beginning.
The money paid for the implant is wasted if the rehabilitation is insufficient because in such a case, the patient is unable to recover hearing and speaking functions,” Irma said. Her son’s diagnosis convinced her that there was a need to take action and volunteer in this field.
“After Rezi’s successful surgery, I was often contacted by parents who had children with similar problems. I realized that these parents needed timely advice and to be pointed in the right direction because this is a diagnosis that requires early intervention and time cannot be wasted,” Irma went on.
In 2016, Irma Kiladze founded the parents’ organization Smenadi to assist those in need of cochlear implants and their parents.
Today, with the financial support of the Europe Foundation, Smenadi helps cochlear implant patients to become integrated into society. The organization brings together 10 parents who together advocate for the improvement of policy on cochlear implanting.
At the very first working meeting organized by Smenadi it became clear that the policy needs improvement. This meeting, which discussed the needs of patients with cochlear implants and their access to health care and education services, was attended by representatives of relevant government entities. . Smenadi presented the results of a survey conducted among 350 patients and urged the state organizations to take their recommendations into consideration.
The patient survey revealed a number of problems: insufficient financing of the rehabilitation process; the absence of the possibility to replace a damaged device with a new one; a lack of specialists able to lead the rehabilitation of patients in a qualified manner; a low awareness of the problem on the part of educational institutions and of society at large, hindering the full integration of children; the absence of individual financing schemes excessive bureaucracy; et cetera.
The 2018 budget has earmarked some GEL 1,300,000 for cochlear implanting and patient rehabilitation, which includes implant costs, surgery, adjustment and tuning, and rehabilitation. According to health Ministry representative Zaza Janashvili this amount is enough for 25 patients a year, though the rehabilitation component is limited to GEL 2,000 per patient.
“It poses an insurmountable problem if the external part of the device becomes damaged and needs to be replaced.
If it is not repaired or replaced within six months, the patient will revert to sign language and the life of the deaf. There must be a solution to avoid this,” Irma said.
The interruption of hearing is a great stressor for patients. For instance, as Rezi’s classmates recall, he is thrown into a panic when the battery power of external sound processor starts to get low.
“It is extremely important to inform the community in which these children are raised about this condition. To this end, I visit schools and conduct awareness-raising activities,” Irma said.
Within the scope of the Europe Foundation funding, Smenadi cooperates with the Kyiv Institute of Otolaryngology and conducts trainings for interested groups, including parents of children with cochlear implants, audiologists, teachers, civil society organizations, and other experts. Moreover, for two weeks a month, a visiting specialist from Kyiv works with the 15 most serious patients undergoing rehabilitation through Smenadi’s program.
“Our aim is to inform as many people as possible about cochlear implants. To this end, we apply all possible means: information campaigns, face-to-face meetings, and communication with media outlets. We try to make our voice heard by the government to ensure that it correctly plans and implements cochlear implant policy; these regulations and systems were created in such a way that the needs of these patients were actually disregarded. It is unthinkable for the state to agree to finance a GEL 40 000 implant or to allocate money for rehabilitation and, at the same time, to not provide the possibility for a replacement or repair of this device, especially while knowing that patients are completely dependent on these devices,” Irma Kiladze said.
According to the priorities defined by the Health Ministry, the financing of people on the cochlear implant waiting list rests on the following principle: bearing in mind that the critical age for a patient to undergo a successful procedure is 5-6 years and, that after this age the risk failure is high, priority is first given to children of this age. Children aged 2-3 form the number two priority group and only after that may an adult patient be financed.
“This scheme is constructed logically, but if an adult loses hearing and requires surgery, he/she may not receive financing for a long period of time because the current system prioritizes young children. Given this reality, there may be the possibility to finance one adult patient a year in order to eliminate shortcomings in the legislation,” Zaza Jajanashvili said.
Since the 1990s as many as 521 patients have received cochlear implants. Apart from hearing loss, many of these patients suffer from other disorders, including behavioral disorders, cerebral palsy, autism spectrum disorder, et cetera. In such cases, the post-surgery rehabilitation becomes even more difficult. It is precisely such patients who Irma Kiladze, together with specialists, works with and hopes that the maximum results will be achieved.
“The result achieved in the case of my son and his full rehabilitation made me confident that by applying a systemic approach and implementing effective advocacy, there will be much fewer problems in terms of both treatment as well as integration into society,” Irma Kiladze concluded.
Author: Ketevan Magalashvili
Photos by: Irakli Shalamberidze