Thursday, September 27, 2012

The Index Case

So this week has spawned a collision of issues in my head.  When this happens I turn to my old standby which for this 36 year old is a good old fashioned notebook.  Oh how I love the feel of the pages of a brand new spiral and I savor the anticipation of filling it with words.

All my life I have collected notebooks and pens and every year "back to school" supply shopping marks one of my all time favorite moments.  It started in Kindergarten and I have participated every year since.  Yes, even as an adult with no children I would go browse the isles looking for the perfect addition to my collection.  So what do I fill them with?  Why writing of course.

I can remember one particular afternoon when I was around 12, I came home from the store with my new purchase a small college lined notebook and green gel pen. Immediately I went up to my room, jumped on my bed belly first and with fresh paper smell filling my nose I opened it up and began to write.  Countless journals and novels later I still turn to the feel of the page and the comfort of the pen over typing. 

So as I have practiced my whole life in and attempt to make sense of things, I grabbed a notebook and began write.  Every thought that popped into my head no matter how random or obtuse became a line item and surprisingly what took shape was a well related sense of my feelings.  In essence from the seeming chaos of my mind came a common thread.  Research. 

Research was not my favorite thing but in this case it was necessary.  You see at Chase's one year check I had to tell the Pediatrician about my hearing issues as the specialist had recommended.  I also told her for my peace of mind.  Even if it was a new hereditary item that could not be prevented I believe with warning we could at least be prepared. 

At first mention of the issue she asked if they had told me it was Sensorineural Hearing Loss.  Shrugging my shoulders slightly I recounted briefly how he said my little villi were "dying off".  She nodded in understanding.  I continued on mentioning that so far there is no hereditary link but that possibly I could be the first one.  "Right, the index case."  She said.

The index case....

Hmmm

How do I feel about that terminology?  Not great.  And in that moment I wasn't sure what she meant but plans to look it up were already forming.

As for the kids, with Chase she advised that I just monitor speech development.  Indicating that it would be pretty obvious if he was having trouble hearing because his talking would not develop.  With Carter she said I needed to look harder because it was easy to compensate for a hearing loss unknowingly.

Really.  I had no idea. 

Sarcasm should be dripping off your screen now.

So for Carter I have to watch his school work, attention span and check in with his teacher more frequently to see if she notices any changes in him.  Since he is a very bright child I am hoping that it will also be obvious.  He will also receive screenings at school...research. 

Index case:  The case of the original patient that stimulates investigation of other family members to discover a possible genetic factor.

Yep, that's me.

Sensorineural hearing loss (SNHL) is a type of hearing loss in which the root cause lies in the vestibulocochlear nerve (Cranial nerve VIII), the inner ear, or central processing centers of the brain.

Causes of SNHL are: 
  • Malformation of the inner ear - The reason he asked for an MRI.
  • Exposure to consistent and very loud noise - I have not had that.
  • Illness as a child - I have had no recorded illness that would have caused this.
  • Aging - Not at 36.
  • Head Trauma - I have never had any type of head trauma.
  • Prescription Drugs - I have not taken any recently or any that I know if that cause this.
  • Genetic/Hereditary - ???
Taking all of that into account I would assume that if my MRI (which I will be taking to him on the 9th) shows a normal ear structure than the obvious answer is that I am in fact the Index case.

The index case....

I'm sorry for putting it out there again it just seems so overwhelming.  I don't want to be the start of any genetic or hereditary issue.

To think that one day my kids, grandkids, even great grandkids might have to put down SNHL on their health history forms bothers me a great deal. 

And to drive home the impact even further, my friend told me how yesterday when her son and Carter were playing outside that she over heard a conversation.  Apparently,  her son yelled loudly and it hurt Carter's ear.  His response was something in the way of, that hurts my hears and my mom has to wear things to help her hear and if you keep screaming in my ears so will I. 

Sure enough that night he came in and told me he needed his hearing checked because his friend was yelling too close to his ear.  He's such a sweet boy and I HATE that I have given him something to worry about at such a young age and also that it will always be a part of his future. 

But there is nothing that I can do about it now.  I have to start adjusting my reality taking into account that this will be part of me forever.

The index case....

In a hundred years when I'm long gone someone might mention my name in a sentence and I hope it goes a little something like this, "Great Great Grandma Ruff lost her hearing when she was young and had to wear hearing aids but she never let it hold her back."