Anyone have any experience with type II CCAM?

shainaedenfield · December 2014

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.

Whitfry · December 2014

No experience or advice, but you might try the high-risk board. Some of those ladies may have some good feedback for you.

Thoughts and prayers for you and PJ!

CoozieInMyPurse · December 2014

No advice, but I'm sending good, positive thoughts to you, your husband and PJ.

beccaj25 · December 2014

Sorry to hear about everything. It sounds like you like and trust your doctors, which is good! I have a little experience with kids with rare conditions, and the one thing I know is that each baby is unique. Ask your docs lots of questions, but remember to always hope for the best. T&P that your little one comes out strong, has a quick surgery, an easy recovery, and that you get to hold her soon

kaydedid · December 2014

Oh, sweetie, major T & P your way. The worst part IMO is not knowing, and unfortunately with a lot of complications you don't really know what all is going on until after birth. We're in a similar boat, wondering about holding/BF our kiddo after birth and between surgeries, although for different health reasons than yours. We were told to ask the head NICU nurse, but I've heard that sometimes the surgeon can answer these questions too.

Check out Ronald McDonald charities to see if they have a house near the hospital your LO will be at. You and your husband can stay there for little/no cost. Also, ask if you can get connected with a social services liason through your hospital. There are aid programs in some states for kiddos with certain health problems/disabilities, regardless of income, which may help with medical expenses even if you have decent insurance.

jordanbohr · December 2014

I'm really sorry you're going through this. My thoughts and prayers are definitely with you!

ngolimento · December 2014

I am so sorry you are going through this. FX that you only get the best of news from here on out, and I really ditto looking into Ronald McDonald foundation.

shainaedenfield · December 2014

Thank you all for your T&P! There is a Ronald McDonald house 3 blocks from the children's hospital she will be at, and we are going to call them as soon as they set up a date for her birth & surgery. Hopefully they will have a room available for us

nlinscott11 · December 2014

T&Ps for your little girl and your family. I can only imagine the heartache you're feeling right now. Lean into one another and just ask a ton of questions to find out every possible thing you can. There are charities that help people going through rough situations. Don't be afraid to reach out for support. Sending creepy internet hugs your way.