Our son Nick was 10 months old when he lost his hearing to meningitis. That was
about 8 years ago. At the time, we had no idea how much hearing was lost. It's quite
difficult to determine on a baby. Anyway, by the time he was 2 years old we saw a doctor
to determine if our child might be a candidate for a cochlear implant. This was just part
of our never-ending search for information and wisdom regarding the choices we make for
our family.
- The doctor, without so much as a glance at his chart or into his ears, asked us
what we thought our son heard.
- "Well, he doesn't hear very much. Loud barking dogs, thunder, popping
balloons, big trucks...that's about it."
- The doctor said, "If I were you I would INSIST on a cochlear implant for
him."
- We were a bit taken aback. "Why?"
- "Because if you ever want him to fit into the hearing world, that's the
only chance he would have. If you want him to hear and speak, that's what you need to
do."
- "But what about the risks--possible infection, facial nerve paralysis,
death under anesthesia...can you say without a doubt that the risk will be worth the
benefits?"
- "Of course I can't. You know there are no guarantees. The cochlear implant
may not work for everyone. And it's still so newly approved for use in children that your
son would be followed by the researchers with much interest. And there would be hardly any
cost to you."
- "The cost would not be a factor in our decision. What about the
risks?"
- "Oh the surgery is really simple. Of course sometimes there are
complications, but they're rare, and if you ever want your son to be normal then you
should have the implant done."
- "That's easy for you to say...it isn't your child's life at stake. You will
be paid quite well for the surgery and have little to lose by performing the
implant."
- "Well, that's a little hard. Of course I have my patients' best interests
at heart."
- "Yes, sorry, we know you do. It's just that you don't have much to lose,
and we have everything...perhaps we could wait a while and see how other children do with
the implant."
- "The time is now if you want to do this. Later the benefits from getting
the implant will be less, after he has gotten older and forgotten any sounds he heard in
his first 10 months."
- "But in a few years more advances might be made in the cochlear
implants."
- "I don't think so. If advances are made they will be in the processor, not
in the implant."
- "But would we have to give up sign language and start over from the
beginning with the oral method?"
- "Most children with implants need an oral-auditory approach. Sign language
isn't really going to enhance oral and auditory skills."
- "But he already knows several hundred words in sign language. We can
communicate freely with him. And if something were to happen to the facial nerve...he
needs his expressions to communicate! His facial expressions are what give him his charm
and help him to connect with other people. We can't risk the loss of that for
anything!"
- "It is a risk, but if you ever expect him to integrate into the American
culture this is the only way to do it."
We left the doctor's office with an uneasy feeling. We didn't feel comfortable
with a decision to implant our son. We had seen other parents of children who had gotten
implants for their children, and their stories were different than ours. Most all the
success stories had been children who were already talking when they lost their hearing.
One or two had had a progressive loss and did not become profoundly deaf until they were 8
or 9 years old, when English was already firmly established. All those parents described
how their child was left out of normal life and seemed withdrawn and unhappy. Their
children wanted to talk but were frustrated. After the implant, their children's lives had
been changed for the better. They were happier, more outgoing and confident, participated
in family and school life more. Our child wasn't withdrawn and was very happy just as he
was. He didn't seem to be frustrated by his inability to speak. He seemed perfectly normal
to us.
That night, in the rocking chair before bedtime, I asked my two-year old, "If you had
the chance to hear...if something could be put inside your head and you could hear people
talking, music, trucks...would you want to have that?" "Mmmm...I would like to
hear trucks."
- We thought about it some more. There was little to no research out there about
CI's being used on very young prelingually deaf children. There were no promises or even
probabilities that the implant would work for our child. I thought about a boy I had
spoken with at a cochlear implant group meeting, who had the implant when he was 9 years
old. We had been in a crowded room with several other people talking, but he was able to
understand most everything I said.
- I had asked him,"How old were you when you became deaf?"
- He had replied, "What do you mean?"
- "When did you become deaf?"
- "I'm not deaf." He looked a bit confused. "I've never been
deaf."
- We conversed some more, and I asked him about his daily life with the implant,
and whether he could hear with only his hearing aid on the other ear (yes) and whether he
could hear with only the implant (yes) and whether he could participate in sports if he
wanted to (yes) and whether he knew any sign language. "I'm learning sign language,
in case I need it," he said.
Some children we met had had the implant but didn't use it anymore. They
weren't the ones at the CI meetings. One boy who went to my son's school and was in the
5th grade walked around most of the time with his implant reciever hanging from his ear.
His teacher explained that she tried to keep it on him but whenever he could he took it
off. "I don't think he gets much benefit from it," she said. Another family who
had invested a lot of time into the implant sadly said that it just didn't seem to help
their son. "His lipreading got better in the last couple of years," they said.
"But he doesn't hear or talk any better than before. Maybe his lipreading ability
would have improved anyway, without the implant." Two children with major
developmental delays had gotten the implants. I could not see any benefit to these two
children. When I looked into their faces, they barely made eye contact. They ignored me
when I talked or signed to them. One child seemed to look right through me. I couldn't
understand how the CI was helping her, but of course I didn't know how she would have done
without it.
ALL the children I knew with an implant had it put in for free. The cochlear
implant researchers, at that time, were excited and wanted children for their studies. All
the surgery and cost of implants were completely paid for by the companies (and maybe tax
dollars). Anyway, none of the families had to pay anything, regardless of their incomes.
For the next year, we talked with different families, professionals who worked
with implants, and read everything we could. Most of the printed material at that time was
put out by Cochlear, and though it was clear and informative, we felt it could not be
unbiased. We began to feel the perfect cochlear implant recipient would be a child who had
learned the family's spoken language already, then lost their hearing either progressively
or suddenly. Most all these children did exceptionally well with implants. They only had
to relearn what the sounds they were receiving meant. They already had a language to form
an association between sounds and meaning. We never met a prelingually deaf child who had
gotten the implant and was now talking and hearing with it. (Remember, this was when there
were very few prelingually deaf children with an implant that had reached an age of 4.)
For some reason, the deaf community was outraged by the implanting of children.
We tried to understand their point of view. We visited with some deaf adults and some
tried to explain. One lady told us she had seen a young girl with the incision on her
head. "I felt such sadness that they would put a foreign object into a baby like
that. Such a big scar! And it won't make her hearing. The parents are just in denial that
their daughter is deaf." I considered that. A big scar didn't worry me. I am a nurse
and know that in most all surgeries there will be a scar. The impact on a person's life
isn't measured by the size of a scar that will be under hair anyway. For many people the
thought of someone's head being cut open and their skull drilled into is very frightening.
But I knew that the surgery procedure itself would not be the deciding factor for our
family. However, there definitely were risks...! What concerned me was the comment that
the parents were in denial. We knew that denial was a normal part of grief. Were we in
denial? We didn't feel like we were. We accepted our son completely, didn't we? And if he
had needed, say an eye prosthesis, or a kidney transplant, we wouldn't have hesitated. My
deaf friends vehemently stated that a kidney transplant was much different. It was a
matter of life or death. "But what about an eye prosthesis?" They said that too
was different. A person could live a perfectly normal, happy life as a deaf person and was
not abnormal or incomplete. "I would hate it if my parents had done that to me,"
most of my deaf friends said. Almost all knew of a deaf adult who had the implant but
didn't use it. I was mystified at the strength of opposition from the deaf community. I
couldn't understand why they would object to some children who might be able to benefit,
getting an implant.
I read a pamphlet put out by the local deaf community. It was not entirely
accurate. The pamphlet claimed that people with cochlear implants couldn't play sports,
for example. I knew that was false. One major argument used in the pamplet mentioned that
a person with a CI couldn't have an MRI. Well, I wasn't that worried about my child not
having MRI's. There are plenty of other diagnostic procedures, and anyway, in a few years
they would come up with a way for a person with a CI to have an MRI. The pamphlet stated
that parents were being "promised" a hearing child and because they wanted their
child to be hearing like they were, they were making uninformed, emotional decisions that
they had no right to make for a potential member of the deaf community. Even while I saw
the grain of truth in this statement, it angered me. I felt parents did usually love their
children and wanted the best for them. Deaf children of hearing parents did not
"belong" to the deaf community. My child belonged to my family.
My husband was most concerned about the benefit/risk ratio. He didn't want to
have our son undergo the procedure unless there was a reasonably high probability it would
make a positive difference in our son's life. I agreed, but I was listening more to a
little voice inside me that kept saying it wouldn't be right for Nick. I tried to imagine
Nick grown up, making the decision for himself. I listened as hard as I could for what he
might be feeling. I thought about my deaf adult friends who had shared their strong
feelings with me. I wondered in my own heart if we wanted a CI because we were in denial.
I considered what our family would feel like if it didn't work AND we lost his facial
nerve. I worried that if we waited it would be too late.
When Nick was three, we traveled to a larger city in our area and consulted
with a different doctor who was doing the implants. We had sent Nick's audiograms, medical
history and description of his hearing to the office 2 weeks before our appointment. We
shared some of our concerns with him. His reply was more guarded than the previous doctor.
"It is a surgery with risks. The facial nerve lies very near the auditory nerve. We
are getting some good reports back on the research, but it is quite soon to tell if your
son will have any benefit."
"Doctor, what do you make of the deaf community's strong negative reaction
to the cochlear implant?"
"Well they are certainly entitled to their opinions. But I don't think most of them
are very well informed. The implant has improved quite a bit since it was first
introduced. Anyway, this is your decision to make and you have to consider what is best
for your child."
"What IS best for our child? If he was yours, what would you do?"
"Only you can answer that. I really don't know what I would do if I were in your
situation. It is a very difficult decision. I can give you information and research
results, but ultimately the family must make a commitment for the extensive followup to a
cochlear implant, and if the family doesn't support it, it's not going to be successful
for the child."
We left his office with a firmer state of mind. We were Nick's parents, and
after all the Lord must have known what he was doing when he gave Nick to us. We were
competent, and we had the right, to make the decisions for ourselves.
That night I asked Nick again,"If there were something that could help you
hear, would you want it?" He was interested and asked many questions. I tried to
downplay the surgery part of it, knowing he would be frightened by that. This time he said
"I don't know..." and then, "but I can hear some things, like lawnmowers
and balloons and thunder." Maybe it was my imagination, or maybe it was my
sensitivity to my son's feelings. But I got the distinct impression that my 3-year-old son
was wistful. Maybe if he could hear, his mother and father would be happier with him. In a
flash of revelation, I felt that it would be wrong for Nick to get a cochlear implant.
What if he grew up and thought, "My parents didn't love me just like I was, so they
tried to fix me to make me acceptable to them." That was not the way we felt...we
just wanted to be sure he had every available option, including the option to hear and
speak.
But I couldn't help feeling Nick would not want us to choose that for him. He
was happy and comfortable being deaf. So we should be, too.
We have come to several conclusions through the years after that.
1) Families are all different. Every deaf child is different. Therefore, different
decisions can all be valid. The question should not be, "Should deaf children have
cochlear implants?" The question is, "Should this deaf child and family decide
to have a cochlear implant?"
2) Parents have the right to make the decision for their child. Even if the decision they
make is different than the decision you would have made.
3) All of us need to accept each other's right to our own decisions and try to understand
the feelings behind the decisions, whether it be for a cochlear implant, a communication
style, an educational placement.
4) We have a responsibility as parents to find out all we can and carefully consider the
decisions we make.
