I am 20 weeks pregnant and at my routine ultrasound they detected a 2cm mass in the baby's left lung. The radiologist gave a primary diagnosis of congenital cystic adenomatoid malformation (CCAM) Our OB has never seen this so she referred us to a genenticist for follow up. My questions are: What is the likelyhood that this mass actually exists. (I am basing this question on numerous conversations with people who were told their baby had a major defect, when in fact he/she was fine) Also,any thoughts on why they would send us to a geneticist? I am 31 years old, have 1 healthy 2 year old daughter, and have no genetic hisory to speak of. Neither does my husband. I'm wondering if they got us all worried about something that may in fact end up to be nothing. Any feedback you could provide would be greatly appreciated.
I am not sure why a genetisit would be the the first choice but a neonatalogist should have been consulted. As this is a rare but very serious disease. You should be exploring all your options now for your child. I am afraid the outcome may not be a good one.
To learn more about this condition go to www.thefetus.net and search for Congenital lobar adenomatosis.
As far as an error being made it happens so a repeat ultrasound should be done but if it shows this same abnormality again start searching for a solution now. The hospital you chose to deliver your child at could make all the difference and intauterine surgery before birth may be possible but must be undertaken now.
Again I am very sorry but this is a life or death condition for your child.
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