Congenital pulmonary airway malformation(CPAM)- “a mass of abnormal fetal lung tissue” (cincinnatichildrens.org).
If you asked me what those two diseases were six weeks ago, I would’ve shrugged my shoulders and told you to Google it. Six weeks ago my husband, Steve, and I were excited to be starting a new chapter in our lives. After having spent the previous year enjoying our honeymoon and visiting places we’ve always wanted to see, we were happily announcing to friends and family that we were pregnant with our first child. But for the past month, those acronyms have been ruling my world.
At our 20 week OB-GYN appointment, Steve and I were like any other expectant parent during this time. We were on cloud nine. We made it through the first trimester. Our baby’s noninvasive prenatal blood test came back negative for other chromosomal abnormalities. Our only worry was waiting until our gender reveal/baby shower in February to find out what we were having.
Nothing could have prepared us for the look on our OB’s face when she walked through the door with the results of our ultrasound. The apprehensive face of a mother, having to tell a mother-to-be that something is wrong with her baby. She composed herself and calmly stated, “We found something abnormal in your ultrasound,” and my heart stopped. “Your baby has what looks to be a CCAM…” I felt like I wasn’t breathing as she went on to explain the disease. How CCAM/CPAM is a spontaneous abnormality and was not due to anything that I did. How we have to see a specialist because the size of the lesion tends to grow with time and can start to compress the heart and lead to hydrops (basically heart failure). How we would need frequent follow-up and would likely need to deliver at a specialized facility that has ECMO (a machine that provides cardiac and respiratory support) for neonates.
Needless to say, Steve and I were destroyed. We spent the night crying and trying to make sense of the news and trying to figure out what to do next. After that first night, we decided not to let this get the best of us. We did our research. We found the best maternal fetal medicine specialists in the nation and set out to make an appointment with them. In a few weeks we found ourselves 6 hours away at the Children’s Hospital of Philadelphia, sitting face-to-face with the authors of all the research papers we were reading. At that time, I was 24 weeks along in my pregnancy. Unfortunately, Baby Paras’ lung lesion had nearly tripled in size and I started intramuscular steroids to try and help shrink the lesion.
This catches us up to present day. I am currently 26 weeks pregnant. Steve and I have been making the six hour drive back and forth to Philadelphia twice a week. Sadly this is our new normal for the time being - waking up at 3am, driving the 6 hours to Philly for the appointment, and then turning right back around to make the return trip home. We are both still trying to work between our trips, but we have to call out of work for the days that we are in Philadelphia. Because Baby Paras’ lesion is so large, our team would like us to temporarily relocate to the Philadelphia area when I reach the 36 week mark. Depending on how Baby Paras is doing, after a C-section, Baby Paras will either go straight into surgery to have the lesion removed or be given a few days to acclimate before having the surgery. The hope is that Baby Paras will only have to spend a few days in the NICU before we get to take him/her home. Of course, this is all subject to how the lesion progresses and how Baby Paras presents after birth.
While we’re adjusting to our new normal of commuting to Philadelphia twice a week and staying optimistic that each appointment will deliver better news than the last, this situation has created a big and unexpected financial burden for our family. For this we reach out to you.
We are trying to raise enough money to help cover the costs of our relocation and the steep medical bills that are stacking up. We’re hardworking individuals and would never ask for a handout, but when it comes to the health of our child we’re desperate to make sure Baby Paras gets the best treatment possible and we sincerely appreciate anything you can do to help. We thank you for your support and prayers during this tough time.
Hazel & Steve