Experience with/resources for CCAM?

June 8, 2011 8:37 AM

Congential Cystic Adenomatoid Malformation (CCAM): Experience? Resources?

I am 19 weeks pregnant and had my anatomical scan yesterday. We were able to find out the sex (boy!) and everything looked great...except that the perinatologist noticed a bright spot on the ultrasound that did not go away no matter how they fiddled with the machine. I go back in 2 weeks to take a closer look, but this is what they think might be the issue.

I've googled it and all and found some info, but I'm wondering if anyone has any experience with this situation, and/or know of any good resources.

posted by DrGirlfriend to Health & Fitness (3 answers total)

IANAD, but am a professional who works with kids with a variety of developmental and congenital concerns. Let me say first I know it's just about impossible to do; but if you're able, try to avoid delving too deep into any information about any particular diagnosis or its outcome at this point. You don't know exactly what this is yet and it's so natural for your mind to want to focus on the worst possible outcomes in this kind of situation. It may be that it's nothing (not uncommon to find "blips" that turn out to be nothing or not much of an issue on prenatal tests). As you get more information, you'll be in a position to gather more accurate information for your situation (if it comes to that).

That being said: I have not worked with any kids with CCAM (that I am aware of), but I do have access to a great medical library. My resources indicate that over 90% of the kids with CCAM have no serious/life threatening complications and the vast majority of that over 90% have normal, healthy lives. Those are some very, very good odds.

Take good care of yourself and your little guy. I wish you the very best.
posted by goggie at 1:13 PM on June 8, 2011

Response by poster: I definitely hear you on limiting just how much research to do at this point - hard to do, but from past experience I know it's true! This time I'd like to be a bit prepared for my next appointment, if in fact they do confirm the CCAM. Thank you so much for your reply, it certainly helps to balance out the scarier stuff that I've found so far!
posted by DrGirlfriend at 3:07 PM on June 8, 2011

First and most importantly, congratulations!!!

Second, I agree with goggie, information is good, but be careful not to overwhelm yourself in all the worst possible outcomes; unfortunately that scary information occupies a lot of the web real estate. While you want to learn as much as you can about your son, keep in mind that what the ultrasound shows now, or two weeks from now, may not have any significant impact when your son is born. Babies change A LOT in utero.

Often these diagnoses can be quite scary, especially without reliable information. Its great that you're looking for resources, but as you've already noted, be careful what you read on the internet. One resource that may be helpful is the Childrens Hospital of Philadelphia site; a well respected Pediatric Hospital.

IANYD and all that, but I do have experience with these issues. Please feel free to memail me and I would be happy to talk to you about some of the things you may expect.

Briefly, your perinatalologist will follow the development of your son's lungs and watch to see how that bright spot develops. If identified as a CCAM, they will follow the size of the CCAM relative to head circumference and continue to watch the amount of amniotic fluid around your son, as this can be an indicator of the severity of the CCAM. You will find some centers (such as CHOP) describe fetal intervention for CCAM when severe; there are data for and against.

Again, I would be happy to answer any specific questions you may have, so feel free to mail me. I'll also try to find some additional reputable resources in the meantime.

Congratulations!
posted by defenestrated at 6:05 PM on June 8, 2011