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Friday, January 9, 2009

Fate and cystic fibrosis

If you ever question fate, here’s a story for you.

I insisted on going alone to my first prenatal exam – I’d had a kid two years before, so I figured I knew exactly what to expect. Well, the nurse offered me a cystic fibrosis screening – something new that they now offer to everyone.

I said, “No.”

We didn’t get any of the genetic tests they offered for our oldest, so why would we want them now? We figured that if the kid had Downs or whatever 1. We’d find that out at the ultrasound and 2. We wouldn’t do anything differently (i.e. terminate the pregnancy). So no point in worrying about it, right? Plus those tests just say if you’re a carrier, so it could cause a lot of worry for naught, since mom could easily be a carrier and never pass it on to babe.

But then, the nurse gave me a dirty look, and I withered. Remember, here’s me, pumped with hormones and all alone, thinking, “Uh, oh. She thinks I better get this test. OK, I need to get this test!”

That night when I was going through the literature they weighed me down with, I noticed a warning that you should check with your insurance before getting the cystic fibrosis screening, because a lot of them won’t cover it. And sure enough, I get a bill for $300+ and I was PISSED. I even called the doctor’s office and the hospital billing department to see if I was billed wrong or if they would cut me some slack because the nurse never mentioned that it might not be covered. They give you a folder full of info and then draw your blood like minutes later – so there’s no way I could have read all that stuff, including the CF disclaimer, before my blood draw. But to no avail.

So, eventually I sucked it up and shelled out the money. But it was a major sore spot. Of course the test came back negative. No one in my family has cystic fibrosis, so no shock there.

Now fast forward. The baby is born and seems healthy the first two days – but he never has a bowel movement, not even meconium. By the night of day two, things go downhill. He refuses to breastfeed. Then orange crystals appear in his pee because he’s so dehydrated. Then he vomits green bile. Then we notice his hard, distended belly. He’s rushed to the NICU. He’s howling in pain, and 14 IV attempts later they shave a spot on his head and finally get one to work.

And the residents tell us that it looks like cystic fibrosis.

And there’s no cure for cystic fibrosis. And what I’ve seen and heard of cystic fibrosis is not good.

But you know what, I’m not a carrier for cystic fibrosis. And when I told them that, it was like, “OK, then we know it’s not that.”

The best, best, best 300 bucks I ever spent was on that stupid cystic fibrosis test. It saved me just a little bit of grief, a little bit of worry. And I tell you, on that particular day, just the tiniest bit of good news was exactly what I needed to keep from losing my mind completely.

The next day my son had an emergency colostomy. And two days later, they confirmed his diagnosis: Hirschsprung Disease.

2 comments:

  1. Hi, i know this is an old post, but I just had to say, my son is now 2 1/2 and has Hirschsprung's too. When we first took him to the ER and then to the Children's Hospital they told us he might have an intestinal malrotation and that if was too severe there wouldn't be anything they could do. During that exploratory surgery they ruled that out, but it was the worst 3 hours of my life. Then when they said they thought it was HD and it could be treated with a pull through I thought that was the best deal ever! Sometimes it's just a blessing in disguise! It's all in the way you look at things. :)

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  2. Anonymous28.11.11

    I never had a cf test and experienced a similar situation. My sons meconium did not pass and he was vomiting green bile. The drs thought it was cf and I was DEVASTATED for some weeks until they did some tests and found that it wasn't. Not until 2.5 years later (which is today) did they find that it was hd since he got really sick. He has a colostomy and is scheduled for a second surgery on thu. Great blog you have! Carin

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