Cochlear implants have only been around internationally for a little over 30 years. They have been used to treat children with severe to profound hearing loss for even less. It is only recently that research and experience has combined to really optimise the outcomes for these children.
We now have children entering school with no discernible language deficit. They are able to hold their own through school with no significant extra effort or support. In a decade these children will ‘flow through’ university and into the workforce. A new generation of children with cochlear implants, leveraging the hard work of those children who have battled before them, will greet the world with no limits.
So what are the factors that are leading to this extraordinary development? We should pause to remind ourselves that these children have no natural hearing. Most have only ever heard through their cochlear implants. The fact that a couple of tiny devices costing less than NZ$100,000 can so comprehensively remove a physical disability that for so many children in the past has limited their education, their opportunities, their incomes and their lives is simply mind boggling.
I believe and assert that there are five factors that have now been combined to provide this optimal ‘path’ for children born with no natural hearing.
Factor One: Early Identification
Universal newborn hearing screening programmes are the foundation stone. In New Zealand newborn screening has dragged the average age of identification of congenital profound hearing loss down from around 4 years old to under 12 months old. This has a stunning effect.
Language development becomes exponentially more difficult as a child’s age of diagnosis increases. With a child identified at age 4yo, long term speech clarity would likely be compromised. With a child identified prior to 12mo, the possibility of their speech production being indistinguishable from a child with no hearing loss is opened up.
Factor Two: Early Intervention
The deaf education sector is a highly factionalised sector. There are strong theories or opinions held with varying levels of coherent research to support them. One theory that is universally held is the need for early intervention. The moment a child is identified as having a hearing loss that child and their family needs support. The child needs additional educational and developmental input to address the deficiency in their hearing sense.
In New Zealand typically early intervention services start working with families within hours of a diagnosis. The best practice is for such services to be present at the giving of the diagnosis to parents.
Factor Three: Engaged Parents
Engaged parents (or caregivers) are critical. Every other factor can be worked around or overcome. Having supportive and engaged parents can not.
It is absolutely critical for a child’s ability to develop excellent language skills for there to be a committed and engaged parent. Whether it is turning up to the 100s of appointments. Whether it is providing the 1000s of hours of home based therapy. Whether it is the management of the equipment. Someone has to step up.
They don’t have to be smart nor hold multiple degrees. They just need to be committed, prepared to learn and in it for the long haul – until the child can manage their equipment themselves.
I have been fortunate enough to get to connect with a large number of parents of children with hearing loss. There are some amazing people who have and continue to move heaven and earth for their children. Many bring new meaning to phrase “mumma bear”.
One factor that is lifting the ability of parents to help their children is the development of virtual parent support communities. In New Zealand we have an active Facebook community of parents and adult users. Internationally there are similar groups. When parents run into a proverbial wall, they have people like themselves who they can turn to for support and ideas – regardless of where they are located. These communities are also a place to learn how other parents a bit further down the path are doing things. And they provide inspiration as children’s successes are shared. In short it is becoming easier for parents (and caregivers) to feel supported. They no longer have to walk the journey alone.
Factor Four: Bilateral Cochlear Implants
In recent years international best practice has moved to providing bilateral cochlear implants for children with severe to profound sensori-neural hearing loss. Where this hearing loss is congenital, typically this would mean implanting the child at between 6-12 months old.
There is still some debate internationally around whether to do this together in one operation or to install the second implant a few months later in a subsequent operation. Many American surgeons don’t like to have children under general anaesthetic for the 4 hours installing two implants takes. However weighed against this is that parents don’t like seeing there kids go through surgeries and it is significantly cheaper to do the two together. These later two pressures are likely to win out as research shows no difference in complication rates between simultaneous and sequential approaches.
Bilateral cochlear implants allow children to develop hearing almost equivalent to normal hearing children. Functionally there is very little difference. In fact many parents report anecdotally that their children with bilateral cochlear implants can hear better in some situations than their normal hearing peers.
The technology has advanced so much that there is now little need to take the external processor devices off. They are rugged and robust. The devices have shrunk to a point where they are in many cases invisible. In short, children can now have an almost normal hearing life with minimal limitations.
Factor Five: Intensive Therapy
Intensive Auditory Verbal Therapy (AVT) has revolutionised the opportunities these children have. But sitting along side this has been developments like remote tele-therapy delivery (i.e. SKYPE) and an explosion of therapy resources. Intensity of therapy in the first few years is critical. Literally every month is worth a year. Tele-therapy has allowed the intensity of delivery to occur regardless of where a family is located. No longer do families need to move to the cities.
The development of therapy services in New Zealand has also allowed for the reduction of reliance on inappropriately trained providers that had previously supported families. While these providers have been well intentioned, in many cases they did more harm than good to the long term development of these children’s language.
Resources such as iPad apps and the like have aided in empowering parents to truly become their children’s ‘first educators’.
In New Zealand we now are seeing these five factors of success in the children coming through our cochlear implant programmes. A typical journey is the child is identified at birth by screening. Support is immediately provided into the family. The families feel empowered to make an active and informed choice for cochlear implants. The child is implanted bilaterally between 6-12mo. They receive intensive therapy and become age appropriate in their language development between 3-5yo – before they start school.
There are enormous benefits to the child, their family and society when these five factors of success combine to produce this outcome. Recent studies show that parents are less stressed. Obviously the educational and social outcomes for the child are enormously improved. And financially there is a huge saving in support for the government.
A child that has had these five factors of success will likely need no or very little support at school. A child that hasn’t had these factors is likely to cost the government an additional $400,000 over the course of their primary and secondary schooling in support. And that does not take into account the cost to the family.
As policy makers look at this area, it is important to recognise the enormous development that has happened in the last decade. With the glaring exception of funding for bilateral cochlear implants, this area is pretty much running optimally. And in fact parents and communities are stepping up in ever increasing numbers and just sorting the bilateral issue for their children. The five factors of success are being for the most part achieved.
In the next decade we will see the fruits of this achievement. A new generation of children who would have formally been lost to education and society will be coming through. They will go off to university, polytec, apprenticeships, etc just like their cohort. They will be indistinguishable statistically from normal hearing children (in fact they may better their normal hearing cohort). They will have every opportunity to succeed. Their lack of normal hearing will be an irrelevancy. And that is the true measure of success for those choosing a cochlear implant journey.
About the author: Sym Gardiner has a seven year old daughter who has profound bilateral hearing loss. She was simultaneously implanted just before she turned two years old. Sym is the editor of 2ears2hear. He is active in promoting the availability of bilateral implants for children in New Zealand. He is a contributor to the Cochlear Implant kids community in the Wellington region and the national Cochlear Implant community.