Congenital Cystic Adenomatoid Malformation Pediatric Patient Stories

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One family’s story: our unborn baby’s birth defect

A little better than a year ago, Shane and I and our 1-year-old son were excited to find out that we were going to have another child. But when we got to our 20 week ultrasound on a Friday in September of 2008, my husband and I were told the words you never want to hear when you are pregnant: “There is a problem with the baby.” We were shown spots of fluid in the baby’s left lung and were told that it most likely was a CCAM (congenital cystic adenomatoid malformation), an abnormal growth of lung tissue that prevents the normal growth of the lungs.

Our world stood still and all we could think to ask was, “What did I do wrong and why did this happen?” We were assured that it was nothing that we did and that was there anything we could have done to prevent this. We had thousands of questions that needed immediate answers. We were told the soonest we could be seen was on Monday with a specialist in Manchester, New Hampshire. This was the longest weekend of our lives. With support from our family and friends, we knew all we could do until Monday was wait and pray.

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