It's a new world for deaf children in Canada.
In February of this year the Hospital for Sick Children in Toronto marked its 1,000th cochlear implant by inviting all the children with a profound hearing loss and who had received a cochlear implant at the hospital to a party. The celebration was noisy and full of laughter. Two of the speakers were young adults. They've grown up with cochlear implants; they spoke out strongly and clearly and were heard by the hundreds of children and parents present.
The cochlear implant is a device that uses existing nerves and electronic signals to restore a sense of hearing to the patient.
Katie Kilmartin and Mikaeel Valli are in the vanguard of a new cohort — children implanted with the mechanical device while very young and who now live in a world full of sound and speech.
While there is still some controversy around implants, almost all children born in Canada today with profound hearing loss can expect the same choice as Kilmartin and Valli — to communicate using sign language or to hear and speak. As recently as twenty-five years ago this was unheard of.
Kilmartin is 23 and was one of the first five children in Canada to get a cochlear implant, a device that uses existing nerves and electronic signals to restore a sense of hearing.
"It's amazing. My life has changed dramatically. I'm able to experience so many things like going to any university, reaching my job goals, having more choices."
She got her first cochlear implant almost 20 years ago, when she was three, and at the time had to go to New York for the surgery. The device failed for her seven years later. By then the program at the Hospital for Sick Children was up and running and there was a more sophisticated device on the market so she had another implant in Toronto.
Valli, now 17 and who received an implant at three years old, says it means a lot to him to experience even ordinary life. "I enjoy hearing the snow scratching against the skis or being at the basketball court and hearing the bouncing against the floor."
It took a few years for the program at Sick Kids to grow. It started in 1993 with the hospital doing eight implants a year. By the late 90's Dr. Blake Papsin, the director of the program at Sick Kids, and his team were doing about 24 surgeries a year. The number rose to 55 in the early 2000s and today they do 120 implants a year. Papsin is very proud that three-quarters of the surgeries now are for bilateral cochlear implants — the child gets a device for each ear.
The devices cost about $24,000 and that amount does not include the cost of the surgery. In the early days much of the money for the procedure was raised by charities. Today, the funding comes from government, hospital administration and philanthropy/grant support.
"We now have one of the largest programs in North America and even the world for stand-alone hospitals," says Papsin. Patients have come from as far away as the Caribbean, Africa and Qatar.
Hearing loss is the most common congenital anomaly, says Papsin, and it is estimated that three per cent of newborns have serious hearing problems. When Papsin came to Sick Kids in 1996 he almost immediately starting lobbying to give cochlear implants to younger children. "Getting the kids hearing earlier has a huge advantage," he says.
The children can then begin the process of learning to use the device to interpret sound and to speak at the same stages as hearing kids. In the early 90s the kids receiving the implants tended to be older and even into their teen years.
There are 12 hospitals in Canada that provide implanted hearing devices for children and/or adults. Since 1999 there has been significant growth in the number of surgeries for adults — 53 in 1995 to 336 in 2007. Most adults are under 60 when they receive implants. Worldwide there are approximately 150,000 people with hearing implants. Three different companies supply the devices, Cochlear Corporation, Advanced Bionics and MED-EL.
Source: Survey of Canadian Paediatric Cochlear Implant Centres
A program to screen babies for hearing loss started in 2002. "[It] was actually the last and missing piece to the whole equation because it really had to detect children younger and younger because at the same time in our laboratory we were finding that the earlier we implanted children, the better they did. So it was almost the missing piece." Today it is not uncommon for Papsin to do implants on children as young as eight months.
Papsin says that while the actual device hasn't changed much over the years, the surgical techniques have.
"We've developed a very small incision and a very quick technique for putting these in about an hour and 15 minutes which is a lot different from when I started in 1995 [in England]. Back then it took me four hours or more to put one in." Now a child over five years old, goes home the same day as the surgery.
While the implants give today's deaf children a world of hearing, Papsin says that down the road what he is doing may appear to be quite primitive. "There's genetic work and basic physiological work where we're trying to restore the sense of audition without the need for surgery and neural prosthetic. I know that 200 years from now people are going to exhume the bodies of my patients and laugh hysterically and see that I put a wire in their cochlear, how primitive. But it works because you see Katie, how phenomenal that woman is."
The implants are not without criticism. There is an ongoing debate especially active among children of deaf parents, as to whether children born with profound hearing loss should embrace their deaf culture and grow up using sign language for communication. They feel that deafness is not a handicap that needs to be treated or corrected but a shared experience and cochlear implants are disrespectful.
Kilmartin remains active in the deaf culture and believes that sign language is still an important tool for those who choose not to have the implant or those who can't adapt to it. She teaches it and calls it a communication support system. Papsin says he avoids the debate because he feels it is up to parents and children to make the decisions about what he offers.
Kilmartin makes it very clear that she is thrilled at being able to hear and to speak and because her first device failed when she was ten, she was able to be part of the decision to have a re-implant.
Neither Kilmartin nor Valli woke up after the surgery and started to speak. Both spent many hours working with auditory verbal therapists. Today they still have challenges such as sorting out who is speaking to them in a noisy room.
Papsin is passionate about his work. "Before I was a doctor I was a musician. And listening and communicating and the process of perceiving through my ears is something that is so critical to me that when this became my field of interest it was just a natural fit. I just can't think of anything more fantastic than speaking with patients in whom this was not a possibility without the cochlear implant. It's just a magical sort of thing and it rewards me every time I see one of these patients. …These children are phenomenal, phenomenal communicators, phenomenal contributors to society and to think that I had a role in that is pretty special."