Wednesday, March 26, 2008

Ctrl-Z My Life

As noted in the previous post, I am learning to use the Ctrl-Z. It is my new best friend, and I think we're close to getting engaged and setting a date. Lord knows I haven't had success in dating REAL people (well, the real-ness of the people I have dated is debatable, but that is another post altogether), so I might as well date a keyboard function.

I once was in a serious relationship with my chemistry book. That was a good relationship, until I had to drop out of chemistry, and then the book felt abandoned and we had problems.

Anyways, that's not what this post has to do with at all. In this post I'm going to tell you the most outrageous CF story I have heard recently.

I know this mother (we'll call her T, since I don't have permission to talk about her on my blog) and she and I served on the Great Strides committee two years ago. Her son has CF and she raised more than $10,000 for the Foundation (and that's a conservative estimate).

Recently T and her husband had another baby - baby girl. Baby girl's initial newborn screening came back positive for CF - this means that another test (a sweat test) has to be performed at the age of 2 months to confirm the diagnosis. Baby Girl was tested at 2 months and the test was negative. For the sake of keeping this short, I will jump to Baby Girl's conclusion - initially the parents were told she had CF, and it turned out she has ONE mutated gene that probably means she's a carrier. To actually have CF, she'd need TWO mutated genes.

Well all this commotion led to the re-testing of Baby Boy because his initial sweat test had been "inconclusive," and they had sent it to a lab in California for confirmation, and that lab said, yes, your Baby Boy has cystic fibrosis. So for the last, 3 or 4 years Baby Boy has been receiving treatments to prevent deterioration of his lungs, etc. Well they had him retested, and it turns out that he doesn't have CF either. Oops, sorry.

If it were me, I would be suing that lab for all the hardship. I can't even believe this story - how can they screw up that terribly???

At the same time, it'd be nice if someone would come along and tell me that, oh wait, you're completely healthy! Ctrl-Z on my life would be wonderful.

2 comments:

MilePost13 said...

That sucks...

Anonymous said...

I just read your blog entry about "T," and wanted to post and see if you might pass along to her my contact information. I'm conducting a research project about the impact of newborn screening on families, and am wondering if "T" might be intersted in finding out more about this work and -- possibly -- in participating in the study by consenting to an hour-long qualitative interview (by phone, or in person). I realize she may not be comfortable getting in touch, but in case she is, here's how:

Dr. Rachel Grob
Sarah Lawrence College
(914) 395 2371
rgrob@slc.edu

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