Hi. I just found out that my baby has CCAM too. I'm 21 weeks along. The noticed a large mass at my 20 week ultrasound and sent me to the peri two days later. Then the next day, I was sent for a fetal MRI to confirm the diagnosis. I won't hear back until this week. They are pretty confident it's CCAM. The only other possibility they mentioned was bronchopulmonary sequestration, which doesn't sound much better.

If you're interested we could sort of support each other. But that's up to you. Reply back if you're interested. I have a blog at luckylo.blogspot.com. You can contact me there.

My daughter was diagnosed with CCAM at my 20 week u/s. It was a very stressful pregnancy. She was going to be mt 5th and final child and my only girl. We were sent to Harrisburg for testing (about an hour and a half away) and also back and forth to Philly, (4 hours away) When my daughter was born, they did allow us to have her locally because her CCAM grew only minimully throughout the pregnancy. When she was 5 weeks old, we were back at CHOP in philly for her surgery. CHOP is the best for CCAM's and our doctor, Dr. Flake (yea I know) was a wonderful doc who surpised even himself with her surgery. He got it all in one shot. A year later she had a ctscan to make sure it was all gone, and she is just perfect! Her CCAM was about the size of a marble. We did lots and lots of u/s and MRI all sorts of testing. Thank God it turned out ok for us. Dr. Flake had done some fetal surgeries with success as well. It can be a scary thing. But in the end, it's usually good news. They surgery is relativly quick, and you look at your newborn in a NICU with some tubes and all, but then they get to go home in a few days. If anyone who wants to talk about it, I'm here.

My baby has also been diagnosed with CCAM at our last u/s a few days ago. I'm 20 weeks pregnant and already his heart has been pushed over to the right side of his chest. Has any one else experienced their baby's heart being pushed also?
I was reading about CHOP online and saw it was number one in the nation. Did they tell you about success rates with CCAM? And their fatality rates? I live in NM now (USAF) but am originally from PA and trying to get a referral to there for the rest of my pregnancy.

My baby has also been diagnosed with a CCAM on the left lung. It has pushed the heart to the right side of the body. We are going for u/s every two weeks to monitor its progress and we have only had two appts but saw a slight improvement in the position of the heart last week. The cyst also hasn't appeared to be any bigger, which is giving us hope.

I am having a hard time finding other people who have been through this or are going through this and I would love to have some support from other parents!

I haven't had any luck finding any support groups online, this is the closest thing. Is this your first kid? How far along are you?

This is our second child. I am now 22 weeks.