Since he can barely stay still, Daniel has a fidget spinner: a toy that he spins on his fingers. On the wrist of the same hand, an automated voice lets him know the time whenever he presses a button on his digital watch.
In the chair next to him, a boy in a gray sweater watches the spinner tricks, and pays attention to the way Daniel pronounces words.
The boy in the gray sweater is seven years old. Daniel is already 15. They are brothers. However, the seven-year-old seems to be older given the way he responds to or corrects Daniel’s words as they reach his ears; those same words that pass through a device and are transformed into a kind of electrical signal to allow Daniel to hear, and like, his voice.
“Everything is going well at school,” he says. The most difficult subject is Chemistry, because you have to learn the table. But we are making an effort.”
What subject do you like most?
“Physics and History. History is very beautiful. I like to know the facts. Everything that happened in Mexico, how Miguel Hidalgo was leading protests, all that.”
Daniel also wears a gray hoodie over a red T-shirt. He has a shadow of a moustache over his thin lips.
When he was born, at 31 weeks, he weighed just three pounds and 12 ounces and had immature lungs (hyaline membrane disease, in medical terms). He was connected to a ventilator, and the excess oxygen caused a total retinal detachment (retinopathy of prematurity). After 22 days, he underwent surgery without positive results. A month later, he had a second operation.
“His little eyes became very inflamed,” recalls Nara Ivis, Daniel’s mother.
The second surgery didn’t result either. So seven months later, Daniel and his mother traveled to Michigan (United States), through a religious organization. With the third operation, Daniel gained some vision: he could make out shapes.
“But he was always a clever boy. He laughed out loud.”
Daniel was just over three years old when he underwent the fourth operation, in Chile. He completely lost his left eye and could barely see the light in his right.
“Also, since I am A Negative and he is B Positive, his blood type conflicted with mine and his bilirubin was through the roof. They had to give him a transfusion. He was given two cycles of antibiotics that had ototoxic effects and, as a result, he became deaf.”
When he was six months old, Daniel began using a hearing aid that stimulated his auditory development. On February 28, 2005, aged two years and eight months, Daniel became the first Cuban deaf-blind pediatric patient to receive a cochlear implant.
“Before he received the implant, little Daniel communicated through the vibration of his vocal chords,” explains otolaryngologist Dr. Antonio Paz Cordovéz. As Daniel was blind, he could not learn sign language.
“After the implant,” he continues, “his rehabilitation became more complex than in other children, because it was also through signs, his hands; we had to try to convey the meanings of words.”
Daniel is now in eighth grade, at the Abel Santamaría Special School for blind and visually impaired children. He likes going to the beach, listening to rumba, reading books in Braille, and listening to audiobooks. He wants to study Library Science.
“But so that he really practices it, not just studies it and then stays at home without doing anything,” stresses his mother.
Like Daniel, 31 many deaf-blind people have benefited from the Cuban Cochlear Implant Program, since the first of these advanced technology surgeries was performed on December 4, 1997, at Havana’s Hermanos Ameijeiras Hospital, and in coordination with the Cuban Neurosciences Center, an institution that inspired these procedures on the island.
Between 1997 and 2004, a further six adults and 15 children benefited from this technology.
“To talk about this issue in the country, we must focus on 2003,” notes Dr. Cordovéz, who is currently the general coordinator of the National Cochlear Implant Group. We must mention the visit made by Fidel to the Abel Santamaría School, where he said that we should immediately seek a form of communication for these children, to improve their quality of life.
“Two years later, at the Medical Genetics Congress, Fidel met with the Cochlear Implant Group of the time, and raised the need to attend to all patients who needed and could benefit from a cochlear implant.
“He also proposed creating the Center for Complex Surgery of the Ears and Cochlear Implants, to treat Cuban, Latin American, and global patients.”
As such, in February 2005, the Cuban Cochlear Implant Program began, with a multidisciplinary, comprehensive national scope.
"So far, 431 patients have benefited throughout the country. Among them, there have been complex cases: cochlear anomalies, syndromic deafness, post-bacterial meningitis, and progressive hearing loss, “ states Dr. Cordovéz.
“In addition, we have begun to provide international medical care. We have provided implants to seven patients in countries like Angola, Haiti, the Dominican Republic, and Venezuela.”
According to Dr. Manuel Sevila Salas, surgeon and specialist in otorhinolaryngology, “One of the things the Program is recognized for is the number of cases benefited, and the way in which we deal with multiple disabilities.”
“All this has made us a reference for the world, as well as the fact of having a multidisciplinary team,” he adds, noting that the Group is composed of specialists in Audiology, ENT Surgery, Pediatrics, Neuropediatrics, Psychology, Ophthalmology, Neurophysiology, Pediatric Anesthesiology, Imaging, Clinical Genetics, Speech Therapy, and Phonoaudiology graduates.
“Between five and 10% of patients suffer complications in this kind of surgery, and this is recorded in the literature. We are below that 5%. This makes us proud. It is the result of our multidisciplinary work.”
“I'm very happy with this implant,” Daniel says, simply, “but I want to have another one... to... to gain more merit.”
“To gain experience. That would be great! I want them to operate on me again already, in January.”
In order to place a cochlear implant, surgery is performed passing through the temporal bone of the skull, which allows direct access to the inner ear. Once there, a device is installed that emits electrical signals directly to the ear.
Once the operation is over, and before the anesthesia has worn off, an imaging test is undertaken on the patient to ensure that the implant is correctly positioned. A telemetry test is also conducted, by which the implant is switched on, and its functioning is evaluated by software.
The patient is then sutured, awakened, and kept under observation for at least 72 hours. There are then periodic follow-up consultations and they wait between three and four weeks before turning the device on. This last step is known as “awakening”.
“Prior to the procedure, patients go through a preparatory period, using high-quality hearing aids,” explains Dr. Sandra Bermejo Guerra, an audiologist and specialist in Otolaryngology. These devices are intended to stimulate the ear, and take advantage of any remaining hearing.
“The prosthetic and linguistic rehabilitation of the patient is also prioritized, as well as imaging, comprehensive pediatric and genetic evaluations, in search of related diseases, since 50% of hearing losses have a genetic origin.”
You may be wondering what the difference between a cochlear implant and a conventional hearing aid is. The function of a conventional hearing aid is to amplify surrounding sound, so that the person can hear it. However, there are people whose hearing is so impaired that they are unable to hear even amplified sound. This is where the implant comes into play, as it transforms ambient sound into an electrical signal that directly stimulates the auditory nerve and thus permits hearing.
Among the elements that distinguish the Program, the neurophysiological and expressive study of patients stands out, as well as the concern to replace devices (whose minimum costs amount to 16,000 euros), since these technologies are becoming more complex, and are constantly updated.
The planning, monitoring of accessories, their guarantee, and the explanation to patients and relatives before each change in technology is part of the daily work of the Program, and assisted by professionals such as Nurse Yesy Martin García, responsible for the accessories department.
It is also necessary to note that these devices, by themselves, do not allow the patient to automatically hear and speak, but rather a rehabilitation process is necessary to teach them how to use this new stimulus.
“This is a novel invention, which has revolutionized the treatment of children with severe to profound hearing loss, who are not helped with conventional hearing aids. Thus we have had to revolutionize the way we deal with these children, because we are enabling the ear canal to acquire language,” explains Dr. Beatriz Bermejo Guerra, founder of the Program and specialist in Speech Therapy.
According to the expert, although rehabilitation is the last part of the process, it is hugely significant as once the device is active and programmed, “we begin to develop auditory and language skills. The results will depend on many factors: technological, biological, their age on receiving the implant, family support, their motivation, and interaction with the educational system.”
She adds that this is a lifelong process, but that it provides her with a lot of satisfaction, especially on seeing the results. Patients acquire communicative and cognitive skills, learn to form their own language and can begin to interact by phone, to communicate through social networks, and live their lives without limits.
“We have seen children smile again, express themselves with their whole bodies; and these other details are the most beautiful. It is the satisfaction of knowing that you did not leave them in an isolated world, of complete silence.”
“Daniel has always been eager to communicate, to interact. That’s why the implant has been so good,” says Nara Ivis.
“He does not like being alone either. Even now, he’s alone in a classroom, and he misses his friends a lot. Then there is a space after lunch, where all the children go to rest, and he looks forward to it. Why? Because there are all the seventh grade students, those from the ninth grade. And then he communicates with them. And the other children at the school care for him, they protect him, when others bother him, and so on.”
She remembers that there was a stage, when he was little, when Daniel would go out with a stick and hit it against all the fences of the neighborhood.
He would say to his grandfather: lets go to the fence that goes “taca, taca, taca, taca” or the one that goes “taca, tiqui, taca, tiqui.”
“How nice that was!” says Daniel.
“Right?” responds his mother, noting “people sometimes do not place themselves in the world of people with disabilities... His world is completely different from ours. A different world. And that does not stop it from being wonderful.”
CHARACTERISTICS OF THE CUBAN COCHLEAR IMPLANT PROGRAM
- Totally free of charge for the patient. The expenses are assumed by the Ministry of Public Health. A full program can cost $60,000.
- Aimed mainly at pediatric patients, since it has been demonstrated that better results are obtained in terms of language acquisition in patients under three years of age.
- Prioritizes patients with multiple disabilities who can benefit from a cochlear implant, especially the deaf-blind.
- Surgeries are only performed in the capital. The selection, evaluation, programming, and rehabilitation are carried out in authorized regional centers in most of the country’s provinces.
- A pre-implant hearing aid is always used.
- Bimodal stimulation is performed, whenever possible. Residual hearing is conserved, whenever possible, by practicing the least traumatic surgery possible.
- The National Cochlear Implant Group is located at the Borrás-Marfán Pediatric Hospital, but has collaborators in several centers in Havana, such as the Hermanos Ameijeiras Hospital, Las Praderas International Health Center, the National Neurosciences Center, Cimeq, Juan Manuel Márquez Pediatric Hospital, and also has a presence in all the provinces of the country.
- October 21, 2000 – The first adult deaf-blind patient was fitted with a cochlear implant.
- July 5, 2007 – For the first time in Cuba, a child aged under one received an implant.
- July 7, 2007 – For the first time in Cuba, a patient with a cochlear (inner ear) anomaly received an implant, which implied greater complexity, and signaled a qualitatively superior step in the surgical procedure.
- June, 2009 – The First Iberoamerican Congress on Cochlear Implants and Related Sciences was held in Havana, which led to the creation of the Iberoamerican Cochlear Implants and Related Sciences Group (GICCA), which brings together specialists from the American continent and Europe who meet to discuss issues related to implantable hearing devices.
- December 4, 2015 – The first simultaneous bilateral implant procedure was performed (in both ears at the same time).
PRESENT AND FUTURE
- Provide implants to children aged under two years old.
- Continue to prioritize patients with multiple disabilities, who can benefit from a cochlear implant.
- Provide solutions for special cases.
- Preserve any residual hearing through new surgical techniques.
- Continue with neurophysiological studies for the objective evaluation of cases.
- Begin to provide simultaneous bilateral implant procedures.
- Offer the Cochlear Implant Program to international patients.
- Participate in multi-center research protocols.
- Provide materials for national and international publications.