The better to hear you

Cochlear implants and now auditory brainstem implants are changing the lives of children who suffer from deafness or profound hearing disabilities.

By JUDY SIEGEL-ITZKOVICH
ABI paddle (photo credit: COCHLEAR CORPORATION)
ABI paddle
(photo credit: COCHLEAR CORPORATION)
A fetus is exposed to sounds even in its mother’s womb, beginning the process of learning sounds. When babies begin to babble at around six months old, they gradually learn sounds with feedback from their parents and others. But what about a child who is born deaf or severely hearing impaired?
Those who are fortunate enough to undergo cochlear implants to make up for damage in their middle ears need to undergo years of therapy to catch up on what they missed during critical months and years. Some 3,000 Israeli children have undergone at least one cochlear implant, since the procedure was recognized and covered by the Health Ministry some two decades ago.
In 2006, the Health Ministry included bilateral cochlear implants in the basket of health services. Over the years, the age of implantation has come down, and today, babies six months old are eligible for government- supported bilateral cochlear implant surgery in Israel.
A cochlear implant and the surgery cost about $50,000, which is covered by the health basket. While this is expensive, turning a deaf child into a normally functioning adult saves the state a great deal of money, because after completing academic studies, state allocations for him end and working in the real world begins.
The latest new hearing technology, performed so far at only a handful of surgical centers around the world, is the auditory brainstem implant to replace a missing or damaged auditory nerve in the inner ear that made them deaf.
ABI is a groundbreaking technology that was invented originally for adults who have a tumor called neurofibromatosis in their ear. Only recently was it used for children who have nerve deficiency, either not enough auditory nerve or no nerve at all connected to the middle ear. Such children need years of therapy to catch up with those who were born with normal hearing.
Therapy for implants is not like a person putting on glasses to see better,” said Elaine Matlow Tal-El, founder and executive director of AV Israel, a non-profit organization founded over 20 years ago. Inspired by the diagnosis of her two younger daughters – twins – named Dana and Tamar who were born deaf 27 years ago after the birth of two girls with normal hearing, Tal-El brought the AV approach to Israel from Canada where she was born.
She and her family financed the cochlear implant surgery for the twins performed in New York, before the procedures and equipment were added to the health basket.
The vast majority of deaf children are born to hearing parents, so the diagnosis comes as an unpleasant surprise. Hearing loss is the most common birth defect in Israel, affecting approximately three out of every 1,000 newborns. Among such children, a fifth will suffer from a profound loss. In up to three percent more, hearing loss will develop after birth due to infections or drugs.
TAL -EL, WHO founded the organization in 1994, gave an interview to The Jerusalem Post recently – the same week as the organization moved from the Talpiot quarter to the headquarters of Yad Sarah in the Yefe Nof/Beit Hakerem neighborhood.
In a couple of months, said Tal-El, Dana will be graduating from Hadassah Academic College in photography and Tamar will be completing her studies in visual communications at the Bezalel Academy of Art. Both, thanks to their implants and training, went to mainstream schools and enjoy music and other skills that require good hearing.
But the cost of auditory-verbal therapy – the most appropriate rehabilitation approach for children with deafness whose families are interested in them learning to speak and live in the hearing world – is not covered by the state. Sixty percent of AV Israel’s budget comes from fundraising, mostly abroad.
Five percent, said Tal-El, is obtained from official sources such as the Welfare Ministry. Families get partial compensation for hearing aids from the four public health funds, “but we get nothing either from the Health Ministry or the Education Ministry.”The National Insurance Institute helped us by sponsoring the majority of the cost of the renovation of a previous equipment storehouse in Yad Sarah so it could become our new offices.
“The rest of the budget comes from services such as mapping the cochlear implant. Patients pay privately for our specialized hearing tests for children,” said the organization’s executive director.
Since the development of cochlear implants, the number of functionally deaf people in the world has declined significantly, and in most cases, the implant connects well with the auditory nerve and allows the deaf to hear. The implant is particularly successful in babies that were born deaf and are implanted at an early age. It is also performed in adults who had normal hearing in the past but became deaf for various reasons. In a small number of cases in which the hearing nerve is absent or nonfunctional, cochlear implants are not the solution to the problem. In such cases, the paddle-like device is inserted surgically into a specific location on the brain stem.
A multidisciplinary team of physicians perform electrophysiological tests to ensure that the implant is in the optimal position for maximum auditory benefit and did not stimulate other areas. A few weeks later, after the tissue heals, the device is activated.
Jerusalem’s Shaare Zedek Medical Center, a minute’s drive from Yad Sarah, is one of the handful of medical centers in the world to perform the ABI (auditory-brainstem implant) on an Israeli-born child. Prof. Thomas Roland, head of the department of otolaryngology and head and neck surgery and colleagues at New York University Langone Medical Center, came especially from Manhattan to help perform the unusual operation with colleagues from NYU and Shaare Zedek earnose- and-throat surgeons Dr. Ronen Perez, Prof. Jean Yves Sichel, neurosurgeons and audiologists.
“The opening of the neurosurgical department at Shaare Zedek allows us to perform complex and multidisciplinary actions that we could not perform in the past,” said Perez and Sichel, who headed the Israeli team that worked with the NYU team.
“The addition of Dr. Nevo Margalit, who is an expert in surgery in the base of the brain, made it possible to access the brain stem and perform the implant,” they added.
The operation, performed at the end of January, was successful, and after the placement of the implant, appropriate electrical responses were received. The child recovered well and was sent home. He has begun to undergo long-term AV therapy at the AV Israel Center; a five-year-old Israeli child who had such an implant at New York University Medical Center before the Israeli operation began such therapy with the organization’s speech and hearing therapists.
Roland, who is a believing Quaker, told Shaare Zedek personnel that the tiny auditory brainstem implant “paddle” that must be inserted into the brain stem “perfectly fits in a natural structure, as if it were created specially for it.”
ALSO AT the interview was Miriam Cohen, AV Israel’s professional director and a speech and hearing therapist who Iis the only professional in Israel to date to have received international certification in the US as a “listening and spoken-language specialist (LSLS) of the AGBell Foundation for the Deaf. With her was Genia Brill, a veteran speech and language therapist born in South Africa who was raised in Israel and was trained in Australia. Both give one-on-one therapy to many children in Jerusalem. Besides the main headquarters in the capital, AV Israel also has branches in Beit Shemesh, Hod Hasharon, Sdot Negev near Netivot and the Samarian settlement of Revava.
“We try to educate therapists in the rest of the country, as there are not enough specialists in this field,” said Tal-El.
“Teachers some to us, and we train them. We need professionals who are accessible to where the children live. We are not yet great believers in long-distance therapy via the Internet.”
Only a handful of surgical centers in Israel provide the critical ongoing maintenance and constant adjustments -- mapping – needed for the care of the implants. AV Israel hopes to be a trailblazer in off site mapping services without the trauma of a hospital visit, as the number of cochlear implant users is growing and taxing existing hospital facilities. The AV Israel center employs over 10 professionals, not surprisingly most of them women (who constitute the vast majority of hearing and speech therapists with degrees), but “we also have one male therapist and a man who is our assistant director,” said Tal-El.
AV THERAPY is a very specialized type of therapy used for children who wear hearing aids or have a cochlear implant or ABI to understand speech and learn to speak. It’s like tuning a piano, but it’s a process that takes years. Using toys with babies, toddlers and young children, therapists follow structured rules and help the child develop hearing as an active sense so that listening becomes automatic and the child pays attention to the sounds around him. Children are especially excited to identify background noises such as a passing train, a barking dog or a phone ringing.
The therapist, who requires a great deal of patience, says sounds and connects them with toys and other objects that the child holds or looks at.
“We teach language through play,” explained Brill. It is very goal directed. We build a unique program for each child according to his needs. We work mostly in Hebrew, but have English speaking families whom we serve and also Yiddish speakers from the ultra-Orthodox community for whom we do AV therapy in Yiddish. We don’t yet have an Arabic-speaking therapist but, since AV therapy works closely with the parents, we have provided AV therapy to Arabic speaking families with the parents speaking to the child in Arabic, under the guidance of the therapist.”
At AV Israel, said Brill, the parents have an address, and the child’s therapist remains the same over the years so time is not wasted on closing gaps and the child doesn’t have to get used to a new therapist every year.
The three explained that the young child learns sounds through listening rather than visual cues. The AV child is expected to learn at regular, not special-education schools and to speak clearly and learn natural language.
The child learns to listen to his or her own voice as well as to others during natural conversations thereby promoting natural voice quality. The conversation-based technique involves the parents as active partners in the process.
“The earliest the child is diagnosed, the better, because it’s important to begin the therapy as soon as possible,” said Tal-El. While there are a few other organizations in Israel that work with deaf children, AV Israel is the only one oriented toward full mainstreaming of deaf children who have assistive hearing devices from the get go.”.
The therapy follows a logical and critical set of guiding principles. The parent, therapist, and child engage in play activities that teach the child to his or her amplified residual hearing to learn typical communication like children with normal hearing.
“Our organization is holistic, doing hearing tests for children, fitting hearing aids, adjusting cochlear implants (mapping) and training children to receive the maximum benefit from their devices,” said Tal-El. “We serve some adults with cochlear implants – the basket of health services gives qualified patients only one – but our main focus is on children.”
“We work in cooperation with Ricky Salem, head of audiology at Shaare Zedek and the hospital’s otolaryngologists Sichel and Perez,” added Brill. At first, the mapping is done every week or so and later every few months.
After the hearing becomes established properly, the mapping can take place even once a year, she continued.
“Hearing takes place in the brain. It is the brain, not the ear, that hears,” continued Brill. “We have to teach the child and the parents as well to help the child access and develop the brain,” she continued. “Experts used to think that only a small part of the brain was involved in learning language, but they know now that it is actually much larger. Hearing a word sets off a chain of events in the brain, both physical and emotional. If the child does not get aggressive therapy focused on hearing, the hearing parts cannot develop.”
“Our therapists need to understand the parameters of mapping for each child to know how the child is hearing,” said Cohen. , so they can know how child is hearing.
“When speech therapists graduate from the university, they have degrees but they don’t learn a lot about the rehabilitation of children who have assistive hearing devices. The LSLS certification ensures that there is a golden standard of therapy.”
The National Insurance Agency did a survey last year, comparing AVI Israel graduates with those of other programs. “The results,” said Tal-El showed that our approach produced the most beneficial outcomes. If the children do not suffer from multiple disabilities, or cognitive syndromes, AV children are mainstreamed into regular schools and use verbal speech rather than signing or other techniques.
In addition, the rate of matriculation among high school pupils who went through our program was also higher than those from other programs.”