What It's Like to Wonder if Your Baby Has Cystic Fibrosis

Hazel and Jacob

Each of our babies has a 1 in 4 chance of having cystic fibrosis. So far we have elected not to do an amniocentesis during pregnancy to find out whether our babies have CF. At this point, knowing wouldn't really change anything for us, and even though the risk of amniocentesis is small, there's still a risk that feels unnecessary. Instead, we collect the baby's cord blood at birth and send it off for genetic testing.

That's great, and the baby doesn't even have to get poked, but it still leaves us wondering for 3-4 weeks after the birth what the results will be. That's after already wondering for 9 months. Honestly, when I'm pregnant I try not to think about it too much because obviously worrying won't change anything. But once the baby arrives and is actually depending on his or her pancreas to survive, it's just impossible not to think about it.

So here are some of that things that go through my mind while we're waiting:

• Phew. She's passing meconium. That's a good sign. If she has CF, at least she doesn't have a bowel blockage. (This occurs in about 18 percent of babies with CF.)
• Are her stools turning yellow yet? Please, please, please turn yellow. Oh good. They turned yellow. Now please stay yellow.
• Do those diapers look like they have mucus in them? Hmm, hard to say. I think they look normal, but it's been a while since I looked at a newborn diaper.
• Did she gain any weight since we checked a couple of days ago? Oh good, another ounce. That's great. Please, baby, keep growing. (Yes, we have a baby scale.)
• She's 11 days old and she hasn't started projectile vomiting . . . Madeline was 10 days old when the vomiting started, so this is a good sign.
• Fabulous, she re-gained her birth weight and she's not quite two weeks! She's not growing super quickly, but she's certainly growing. Keep it up, baby!
• Does she taste salty? No, but then again, newborns don't really sweat anyway. Hmm.
• She's a little bit fussy tonight. Normal fussy or having-severe-gut-pain fussy? 
• She gained a few more ounces!
• Is that the beginning of a double chin? And look at her thighs; it seems like they're starting to fill out just a bit.

And so on. This isn't a constant internal dialogue. We aren't fretting over this every day or losing sleep over it. But we think about it, and we talk about it, and we watch for the signs so we can be prepared and know when to seek more help.

Violet gained weight slowly but surely, and by the time we got her results back, I was reasonably certain (or at least very hopeful) that she didn't have CF. Jacob gained weight so crazy-fast that the pediatrician weighed him on three different scales during one visit, just to make sure we were getting an accurate reading of his weight. Because of his superb weight gain and lack of any other symptoms, we would have been floored if he had CF. So far Hazel is looking pretty good, but she's on more of a Violet path than a Jacob path, so we shall see.

Four more days.