Joanne Bugeja was curtly informed, when her son was born deaf, not to expect that he would ever call her “mum”. Twenty years ago, Doris Camilleri’s son came into the world profoundly deaf, but she was determined to give him the best start in life. Andrea Faye Christians sounds out the cochlear implants that gave these children the reason to celebrate two birthdays: the day they were born and the day they first heard.
As one of the five senses, hearing is central in our ability to function in the world we live in. Indeed, the sounds around us – be they the voices of loved ones, music on the radio, or simply birds singing – are something a hearing person takes for granted.
But deaf or hearing-impaired people inhabit a very different world in which even the most mundane tasks, such as answering the phone, can be a problem.
While lip reading and sign language have long been accepted methods of enabling communication, advances in medical technology have now made it possible for deaf people to actually hear with the aid of a cochlear implant, suitable for both children and adults who are either deaf or severely hard of hearing.
At present, there are over 60 implantees in Malta and this year The Malta Cochlear Implant Association celebrates its 15th anniversary.
Doris Camilleri is the president of the association that was formed originally as a support group and started off with just three parents. Her son, Matthew, who is soon set to celebrate his 20th birthday, was born profoundly deaf and was the fourth person to have an implant in Malta at three years old.
Seventeen years ago, attitudes were somewhat different, Doris recalls. “At the time, the cochlear implant was quite a new procedure and many people considered it to be a novelty.
“Although sign language and lip reading are to be commended, we live in a hearing world and I wanted to give my son the best start in life. If you have a bad heart, you fit a pacemaker. The cochlear implant is essentially a bionic ear.
“I didn’t get much support at the time, so I did some research alone and found out about the implant, but it was not available in Malta back then and I had to go to St Mary’s Hospital in Manchester for a consultation.
“I went to Britain 12 times in the year Matthew had the implant, and at great personal expense, but I have never doubted that it was the right decision. My only regret is that he didn’t have the implant fitted sooner as he lost those crucial first years of speech development, although he now leads a full life.
“The implant has given him more independence. He is a student and recently went abroad with his friends for the first time and is already planning a second trip.”
Joanne Bugeja from Zebbug has two children with cochlear implants: 17-year-old Matthew and Anne Marie, who is 13. Like Doris, Joanne has never for a moment doubted that she made the right decision.
“When my son was born, the medical professional who assessed him recommended an intensive programme of lip reading and sign language, but also told me something that will always remain with me. She said: ‘In truth, don't expect that he will ever call you Mum.’
“Hearing the news that it was unlikely my son would ever speak was heartbreaking. I kept thinking there had to be a way. I was determined he would speak and I worked hard with him for seven years before and after the implant.
Hearing the news that it was unlikely my son would ever speak was heartbreaking. I kept thinking there had to be a way
“Both children received their implants at St Mary’s, necessitating travel back and forth to Britain 26 times as the surgery was still not available in Malta at the time.”
Today, Matthew plans to study mechanical engineering, while Anne Marie, who was implanted at 18 months old, attends the National Sport School in Pembroke. She is currently the only special needs student and is an accomplished gymnast, winning five gold medals for Malta in the 2011 Special Olympics World Games at just eight years of age. Last year, she again represented Malta in Los Angeles, bringing home two silver and a bronze medal.
On this slightly breezy day, she has to concentrate as we chat because there is also lots of background noise in the outdoor cafe where we meet. Soft spoken, her voice is clear and coherent as she talks about her friends and school. She is, too all intents and purposes, just like any other 13-year-old girl until you notice the cochlear implant she is wearing.
Living with the disability, however, is an ongoing struggle, and despite the improved quality of life that the cochlear implants have provided, there are still many day-to-day difficulties that need to be addressed.
Unfortunately, for example, the educational aspect of accommodating deaf and hearing-impaired children and students still appears to be is lacking in Malta.
“The education system here already puts enough pressure on normal children, but for the hearing impaired, it’s doubly difficult,” Joanne explains. “It’s easy to think that assigning an LSA to a deaf student will resolve the issue, but more needs to be done. My daughter often can’t understand the teacher, especially if she turns her back to the whiteboard.
So, more often than not, I not only have to help with her homework, but also first teach her what she should have learnt at school. It’s exhausting for both of us, but at present, there seems to be no other option. We need teachers who are specialised in this. They are available in other countries, so why not here?”
Joanne also points out that speech therapy sessions should not be scheduled during school hours as is often the case, while subtitled local television shows and news programmes would also make life easier.
According to Doris, implementing a loop system at the university would greatly help hearing-impaired students as it creates a sound quality that makes it seem as if the teacher is standing right next to them.
In her son’s case, the determination that he should be an achiever also academically led Doris to give up her job as a pharmacist. Her decision paid off as Matthew went on to pass nine O levels, two A levels and four Intermediate exams.
Nevertheless, on a day-to-day basis, even seemingly routine tasks can present problems. The implants have batteries that need to be changed every couple of days. Currently, no funding exists for this, although the Malta Cochlear Implant Association does what it can to help by sourcing them from abroad where they are cheaper.
Visits to Mater Dei’s ENT Ward are another issue as the loudspeaker announcements are difficult for implant and hearing aid users to understand. A digital read-out system throughout the hospital would be much more practical and would also help older people who are suffering from hearing loss.
Nevertheless, undeterred by the sacrifices made and the challenges their children face, Joanne and Doris remain upbeat. As Doris explains: “We know this disability will never go away, but despite its limitations, the cochlear implant is amazing because it has allowed our children to experience the miracle of sound!”
Both mothers recall their children’s reaction to it as an emotional moment, but it is perhaps best left to Joanne to explain. “My children have two birthdays – one for the day they were born and one for when they heard for the first time!”
How it works
A cochlear implant is a small complex electronic device that consists of an external portion that sits behind the ear and is held in place by a magnet while a second portion is surgically fitted.
This latter section includes a microphone to pick up surrounding sounds; a speech processor that selects and arranges perceived sounds; a transmitter and receiver that receives messages from the speech processor and converts them to electrical impulses; and finally, an electrode array that is linked to the cochlear. This sends the impulses to different sections of the auditory nerve that subsequently transmits them to the brain.
Whereas a hearing aid amplifies sounds so that they may be heard by damaged ears, a cochlear implant works differently in that it totally bypasses the non-functioning parts and directly stimulates the auditory nerve.
It does not, however, restore hearing in the conventional sense, but rather gives users a useful representation of the sounds of the surrounding environment, ultimately enabling them to have conversations with other people in person and on the telephone.
However, the story does not end with the surgery as the recipient will then require audiological therapy to learn or relearn the sense of hearing, as well as speech therapy.
The cochlear also has certain limitations. It has to be removed for sleeping and washing, although a special waterproof cover has now been developed to enable users to swim with it in place. It is also affected by wind or loud background noise, making it sometimes difficult to differentiate between sounds.
This story appeared in last weekend's edition of Pink.