Monday, August 8, 2011
My son Ben's genetic deletion happened as a random error at conception.
The way a researcher described it, when my chromosome 8 -- let's call it a green ribbon -- exchanged parts with my husband's chromosome 8, a red ribbon, to produce a striped ribbon, a minute piece was left out.
Early on, I found giving detailed histories of my pregnancy painful. Although I'd been told Ben's condition was a random or 'spontaneous' change, I didn't know a lot about it.
So when I was asked whether I had taken prescription drugs, drunk alcohol or experienced 'stress' during my pregnancy, and then was asked all kinds of questions about the actual birth -- including whether he needed oxygen -- it was hard not to feel in some way implicated.
Last week, I was stunned when I did an intake interview with an agency, and was asked the same questions!
I explained that Ben, now 17, had a genetic deletion that occurred at conception -- so I wasn't sure why I was being asked about my pregnancy and delivery. The cause of his disabilities was known and wasn't related to anything I did or didn't do during pregnancy.
The intake person explained that they wanted to learn more about the causes of intellectual disability (I repeated the above, but the person didn't seem able to process it -- or perhaps she was just following orders about filling out the forms).
So we went through a detailed pregnancy and delivery history again. Whenever I was asked a question about something I did or didn't do, or the circumstances of Ben's birth -- and the person took down detailed notes -- I followed by saying: "But the genetic condition was caused at conception. It had ALREADY happened!"
How is this pregnancy information used? Will someone who understands the mechanics of a genetic deletion read it?
Should someone who doesn't understand how a genetic condition occurs be asking questions about my pregnancy?