My baby was diagnosed with CCAM

[char lotte]

Hi everyone. I need your help. I’m going to try to make my story short. My baby was diagnosed with CCAM at 18 weeks, right side, the right middle lobe. The perinatologist said that she is sure that it is a CCAM, however, she has been acting very weird about the fact of announcing us much about this thing. she has said that it is pretty “small-ish”. Currently I am 23 weeks pregnant on weekly ultrasounds and the CCAM, we’ve been told, that has slightly grown. We have been told that my baby would need some kind of laparoscopic surgery right after his birth. However, there are yet not signs of hydrops and anything at all in that matter, thanks to god. The doc has not said us what stage and so on. Generally I think it is a nice lady, however I start getting pretty annoyed at the moment with her.

 

I know that the docs at UCSF are renowned in CCAM’s and my perinatologist said that she has seen 3 in the past year, however, besides only one of the patients (with a pretty favorable outcome) has been evasive about those other 2.

 

Is there anybody who knows the doc at the phonenix children’s is to get a local second opinion from before we are going to the UCSF route? The perinatologist doc I am talking about is at UMC in Tucson. I am also pretty frustrated because I have been unable to find any support groups online despite the fact that I have been trying pretty hard to find any.

 

[caty]

Hey charlotte, not so long ago I have also found out that my baby is having CCAM too. I’m now 21 weeks preg. They have started to notice a pretty large mass when I have been 20 week preg. When they have done the ultrasound. So they have sent me to the peri two days later. then, after that, the second day I have been sent for a fetal MRI in order to confirm the diagnosis of CCAM. I am not going to hear back the results until the end of this week. They are now pretty confident that it is CCAM. They have also mentioned that the other possibility what it might be is bronchopulmonary sequestration, but this does not sound to be that good either.

 

I don’t know, but I have been thinking that in case you are interested then we could kind of support each other, however I guess this is mainly only up to you. if you want then you could reply back, write me back here or you could write me privately if you want. I wish you good luck and I hope all the best would come to you and your child.

 

[Carol]

Hey there all. my daughter has also been diagnosed with this CCAM when I have been pregnant with her at 20 week old. It has been a very very stressful pregnancy at all. she was going to be my 4th and my final child but she was going to be my only girl. We were sent to another state in order to be tested (it is approximately an hours and a half away from us) and also back and forth to another state which is already 4 hours away from us. Well, when my daughter has been born, the docs allowed us to have her locally due to the fact that her CCAM grew pretty slow, as they told us, throughout the entire pregnancy. When she was only 6 weeks old, we were back at the CHOP in that 4 hours away state from us in order to have her surgery. As much as I found out, CHOP is the best for CCAM diagnose and our doc (thanks god) was a very good and amazing doc who, as he said, surprised even himself, with the surgery he has done on my daughter. He said that he has got it all in only one shot. One year later, she have had an CT scan in order to make sure that all of it was gone and we have got the results a bit latter which showed that it was all perfect and that her CCAM was approximately a size of a marble or something in this regard. We have done a lot, I mean A VERY LOT of U/S and MRI as well as a lot of kinds of testings. I guess all sorts of tests for this regard. Thank god very much that it has turned out fine for us, I have been dreaming about it very much! the doc I have been talking about has done some other fetal surgeries  and he also had some success too. but, I do know that this is a very scary and stressful thing. however, I have heard from that doc that in the end, there are usually only good news so that was comforting. As much as I remember, that surgery was pretty quick and you are looking at your newborn in a NICU with some tubes and all, however, then they are getting to go home in a couple of days. if there are some people who would like to talk about this more then you can always feel free to write me. I am going to try to do my best to help you out with everything I can.