Our physical senses play an important role in our lives – the sound of a baby’s laugh, the taste of chocolate on the tongue, the sight of a loved one’s smile, the caress of a gentle breeze.

 So I think it comes as a surprise that a child who has never experienced one of these senses would reject the opportunity if available.

Many years ago, I treated a little boy with Down syndrome who was born premature and without hearing. He was the firstborn of a young couple who were determined that he would be like any other child. Their ambition for him was astounding considering that not only was he deaf but with moderate to severe cognitive impairment. Physically he presented with profound low tone and joint hyper-mobility. The therapy team had quite a challenge.

Urged on by the parents, the therapists on his team were dedicated to helping this boy reach his developmental milestones as close to “on time” as possible. He learned to stand and walk and ride a tricycle. When he was about two, his mom took him to see a highly regarded speech therapist so that he could learn lip reading and sign language. Because of the hearing impairment, he did not speak. At about the same time, his mom explored the possibility of getting a cochlear implant. She was determined that he should speak and hear. Her argument was that he had enough of a challenge having Down syndrome, without having the added burden of deafness.

I remember clearly something this mom told me after she consulted with a specialist. The surgeon told her that deaf children do not always accept hearing.

The doctor told her a story about two sisters who were both deaf. Their parents chose to get the implants for both of them. The younger one accepted the implant and used it. The older girl refused to wear hers and would fight if made to put it on. I was surprised to learn that non-hearing children would choose silence over sound. Well, the family I was working with decided to go ahead and have the surgery with hopes that their son would wear the device. Their hopes were not realized. This little boy would grab the external device and throw it across the room every time we put it on. We tried bribing him. We tried time-outs. We tried various consequences. It didn’t matter what we did, he refused to wear the external component.

Those of us with hearing do not give much thought to sound.

Because we are born with hearing, our brain filters information and we learn to distinguish sounds. We recognize voices and distinguish them from background noises. This occurs naturally and developmentally. Cochlear implants send auditory signals that the child will need to learn how to decode. They do not actually hear in the usual sense.

There are additional issues which can compound the problems with wearing an implant. It places the child midway between two cultures – the hearing and the non-hearing.

 This often leads to social problems later on because the child does not get accepted fully by either culture. Deaf culture, in particular, rejects the use of cochlear implants. The community as a whole do not see themselves as impaired.

Hearing parents may view deafness as a disability that needs to be fixed.

A cochlear implant can enable a deaf child to “hear” sounds and possibly understand language. Those are the potential benefits. The potential downside can be serious. The implant requires major surgery. It is designed to “tap into” functional hearing nerves and conduct the information to the brain for processing (simple explanation). The surgery can be risky. It can further damage existing nerves or cause infection. It can result in meningitis, vertigo or facial nerve injury. It is susceptible to damage.

This probably sounds as if I am taking sides, and that is not my intention. For the right candidate, a cochlear implant is a good decision. It is hard to know who is the right candidate – especially when working with young children. Children who are born deaf may prefer to remain so. Children who suffer hearing loss later on may want to regain the ability to “hear”. Most often, the cochlear implant allows the child who was born deaf to discern speech via lip-reading, rather than by interpreting sound as do those with hearing. Very successful cases can result in the ability to recognize volume and interpret speech by sound alone. This outcome happens more frequently with those who were born with hearing and then suffer a hearing loss.

There is no easy answer for parents. I believe that all parents want what is best for their child. As a hearing person, it is easy to understand why parents would choose cochlear implant surgery. We associate hearing with ability. Lack of hearing is considered a disability. But when a child is born without hearing and learns to adapt, they have acquired ability. In my case of the little boy with Down syndrome, I think his cognitive and physical issues made him a poor choice for the implant. But it was not my place to offer my opinion to the parent. The one thing I do know is that we can’t determine what is best for a child based on the wrong criteria. The decision should not be based on the parents’ experience as a hearing person, but rather on how the child’s welfare will best be served.

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