Sunday, June 14, 2009

The Missing "X" Again.

I was disturbed by something I read in the local paper today. A couple is suing because they were allegedly misinformed about their daughter's condition. A pre-natal test did NOT indicate the girl had Downs Syndrome, but after the girl was born, it became evident she did. The couple says had they known this, they would have aborted.

I don't usually write about my Turner's Syndrome, but this story reminded me of when I was first diagnosed at age 13. I felt like a freak. Hated being a "syndrome". And the book my parents were given seemed so condescending.

A brief reminder, TS is a chromosomal defect that affects some 1/2000 LIVE births. Only girls get TS. Those girls that become live births can have a multitude of "problems" ranging from infertility to heart and kidney problems. Often learning can be difficult for TS girls.

The book my parents were given was called "Good Things Come In Small Packages". What bothered me about that book was the FAQ section. It had questions like:
  • Are TS girls retarded?
  • Are they promiscuous?
And there were others, but the "retarded" thing stuck with me. So when I read the article today, it made me wonder what my parents would have done, had they known sooner of my TS. Of course they love me, and it's a moot point now. I'm 42, a college graduate, mom and wife. But still it makes me wonder, with today's pre-natal testing what lengths parents will go to to get the "perfect" baby and if a TS baby is too "imperfect".

1 comment:

Anonymous said...

Your posts on TS are great. It would be awesome if you could contribute to TSSUS book project.