After becoming pregnant with my daughter after a month of trying and having a textbook pregnancy, I never expected that it would take 16 cycles for baby #2 or that there would be complications.
We found out we were having a boy, but then the tech sent me back to my dr to talk about results. Then the nurse could only tell me cysts were found and there was fluid in the belly. We were immediately referred to specialists for a Level II. That confirmed we were dealing with a CCAM with a threat of hydrops due to fluid build up. The CCAM was so large it was pancaking his heart to the other side of his chest and causing ascites in his belly. We were immediately referred to Cincinatti to the Fetal Care Center because it was uncertain if we would need open fetal surgery. We drove 10 hours leaving our daughter behind with her grandfather. I had many tests done: MRI, ultrasounds and fetal echos. Sean had a Type 1 CCAM with large cystic lesions. They performed 2 shunt procedures while I was there. The first one I think pierced my membrane because I lost my amniotic fluid somewhere, but my water hadn’t broken. Shunt #2 was stable and I had an amniotic infusion and after some rest and a follow up ultrasound we came home to NC. Duke then took over. At 25 weeks I had shunt #3 to drain and shrink the cysts. This one worked. I was able to carry Sean to 32 weeks when my water broke. I was then put on hospital bedrest. They needed me to be 35 weeks and Sean to be 5.5lbs in order to be a candidate for ECMO if needed. I made it to 35 weeks and he was delivered via c-section on January 27, 2011. They tried many ventilators, but he was struggling. He was put on ECMO on day 1 of life and the CCAM was removed from his upper right lobe of his lung on day 2. He was on ECMO for 21 days, became septic and had NEC, had PPHN (persistant pulmonary hypertension), because addicted to pain meds and narcotics. He was on a ventilator for about 6 weeks. We didn’t hold him til his due date of March 1st. He suffered a liver injury from a malpositioned UVC and TPN going into his liver. Our last hurdle was feeding. Since he still had respiratory issues and was being weaned off narcotics we opted for a G tube to get him home and well. Sean has now as of this writing, been home for almost 4 months and is currently 6 months old. He does eat some by mouth and the rest via tube. He gets reflux meds, diuretics and thyroid meds. We see specialists every few months. He also gets feeding therapy, developmental therapy and physical therapy. CCAM’s occur 1 in 25,000 pregnancies and the incidence seems slightly higher in males. There are 3 types. Type 1 is cystic and large, type 2 small cysts and 3 is solid. A big risk with these cysts is hydrops which is a build up of fluid which can then mirror symptoms in mom of pre-eclampsia. I also had placentamegaly (enlarged placenta). We didn’t know what was going to happen when we found out and there was so little information on this disease. I find myself wanting to tell the story whenever I can to raise awareness. I am very grateful for the doctors that were quick to treat this condition so Sean could be with us today. Looking at him you would never know what he went through. He has many scars, but it’s a small price to pay for life.