Thursday, July 19, 2007

Why you should always listen to your intuition

I believe I owe an explanation of something I threw out earlier this week when I was talking about Graceful's Tourette Syndrome. Okay, technically, I don't actually owe anyone an explanation, but I promised one and here it is.

When Graceful was four, we found out that she was partially deaf in one ear.

When she was born in 1998, hearing tests were not mandatory on newborns and, as she was clearly reacting to noise around her, we didn't insist on it. Our mistake, but in our defense, we were in a big city hospital and I had the roommate from hell, so I just really wanted to escape and go home.

Fast forward three years to Graceful's three-year check up, at which time, the nurse did a cursory hearing test. Graceful didn't respond as she should have in one ear, but the nurse chalked it up to the quick nature of the hearing test and Graceful's age. I questioned the pediatrician about it, but she was unconcerned, as were we.

A year later, the same thing happened again.

About six months later -- by which time her tonsils had grown enormously and were causing some minor problems with her speech, I asked the pediatrician for a referral to an ear/nose/throat doctor. The pediatrician didn't see the need for it, but I give her huge props for always listening me when I have a concern and at least giving me what I need to investigate further. We made the appointment with the ENT and, on a whim, I asked for a full hearing test to be included in the appointment.

We went to the appointment and the doctor wasn't too concerned about Graceful's enlarged tonsils or her speech. We went through an extensive hearing test and then met with the doctor again to discuss the results. I wasn't expecting anything other than "Your daughter is perfect, so go home and stop being so damn neurotic."

Instead, the doctor said that the hearing tests showed that Graceful has congenital otosclerosis in her right ear. The middle ear is the location of three ossicles (the smallest bones in the human body) -- the hammer, anvil, and stirrup -- that move in a certain way when sound waves pass through. If they don't, they don't conduct sound properly. In Graceful's case, she has a about 30-40% hearing loss, primarily at the lower frequencies. It's like she hears somewhere between mono and stereo.

We'd never noticed anything unusual before that time, but the doctor asked Graceful a couple of questions and she piped up that she usually sleeps on her right side because she hears better on the other side. I nearly cried at that point, because what kind of shitty parent doesn't notice if her child can't hear well? But Graceful was so used to it that it had never occurred to her that life could be any different.

The good thing is that Graceful's hearing will never get worse. It won't improve either but we can live with that. She could wear a hearing aid to fully correct her hearing, but she has always opted against it and we've respected her wishes, with the caveat that if her school work ever suffers, we'll get the hearing aid. In other words, she knows not to use her hearing as an excuse for goofing off or daydreaming. Just to be safe, we've always requested preferential seating in the classroom.

There is a surgery that could correct Graceful's hearing, but the risks are such that we are not considering it at this time. There's a small chance she could come out of the surgery profoundly and irreparably deaf in one ear. Longer term, there's a much greater likelihood of nerve damage that would lead to eventual total deafness 20-25 years down the road. So, for now, no surgery, although we'll discuss it with the doctor again when she's a teenager.

So the moral of this story is: Always listen to your intuition, even if you worry that you'll look like a very neurotic person.

1 comment:

C.Flicken said...

"What kind of shitty parent wouldn't notice..."? But you DID notice, you DID get the testing done, you DID take the steps necessary to make you daughter's life as normal as possible. Don't be so hard on yourself. Why are we always so hard on ourselves?