Anyone have experience with type II CCAM?

shainaedenfield

I am 27 weeks pregnant with my first child, a daughter, named PJ. At 20 weeks out doctor referred us to a specialist because they said her chest appeared "cystic-y".
Our first appointment with Dr. Edwards was Nov. 11th, and he confirmed that there were cysts in her chest, and that he would be monitoring it. At that point he said there was a 15% chance her condition would resolve itself, and naturally- that is what we were praying for.
Our second visit with the specialist was Dec. 2nd, and we got worse news than we'd expected. The entire right side of PJ's chest is cystic tissue and there is fluid around her heart. I have an appt Dec. 19th to meet with the pediatric surgeon who will look at her chest and make plans for surgery, and also let us know the possible outcomes for her condition. But as of now- surgery is inevitable.
I have another appt with our specialist, Dr. Edwards, the same day, he will measure the fluid around her heart again and if it has increased he will do a procedure to drain it. He said right now that's his main concern, because it could cause heart failure.
The specialist said they don't know how much of her lungs are able to function, they can make out the left lung but the entire right side of her chest is a mass of cysts. He said they won't know anything about the condition of her lung/lungs until surgery.
Right now we know I will have to give birth in either Atlanta or Augusta, and she will be transported immediately to the children's hospital for surgery.
I've spoken to one other person whose baby had the same condition and same surgery, etc., and he was on ECMO for the first 3 weeks of his life, then on an intubator for two months after that.
Anyone else's child have the same condition? What was the outcome? I'm very scared, I don't know what to expect. I don't know if I'll even get to hold her when she's born before they take her away for surgery, and while she's on ECMO I won't be able to hold her at all.
To top it all off my husband is the only one working and we are gonna have to travel for her surgery and stay with her during her recovery, so no income.

LexiSophie55

I do not have specific experience with CCAM - but at one point in my pregnancy, they thought my son had that issue.  We did not have a diagnosis until after he was born...it was 20 weeks of ultrasounds and tests...and we never figured it out.

My son ended up having a heart defect and had open heart surgery at 5 months old.

It is VERY scary not knowing.  That was the worst part for us.  I started to calm down when I had a tour of the facilities.  They made me feel so at ease.  If that is an option, try to get that done as soon as possible.  Seeing the room I would deliver and where they would examine him helped a lot.  Also running through the scenarios helped.  "If it is affecting the babies breathing, it will go _________", "if it is fine, we will be here for _________".  Those all calmed me down and prepared me. 

I also had a hard time letting go of the "perfect" delivery that I had envisioned my entire life.  You know what - it all happens so fast and you have the rest of your life to bond, it really doesn't matter in the long run.  Time went by fast for us in the NICU and after surgery.  I hope it does for you as well.

Just keep doing what you're doing and the baby will be here before you know it.  I will be thinking of you.