When my wife got the standard ultrasound to determine the sex of our second child, the local office called and told her we needed to see a specialist. They said they had never seen this before and didn't know what it was. So we went to the "specialist" in high-risk pregnancies in the Johns Hopkins network and he told us our son had a CCAM, he would likely die before being born, and do we want to schedule an abortion. He did not refer us to any other specialists or doctors, or give us any other information about the condition.
My wife took it upon herself to research what a CCAM was and what could be done about it. We found that there were 2 hospitals in the US that are considered experts in CCAM diagnosis and treatment. One in California, and one in Philadelphia - 3 hours away from us. We called and told the staff at Children's Hospital of Philadelphia what had happened. They scheduled us for an entire day of evaluations and meeting with their specialists in less than a week. When we saw the doctors at CHOP they evaluated my wife and the baby and told us he needed to be monitored by ultrasound twice a week and maybe delivered at CHOP. BUT they said, most of the cases they have turn out fine, with the baby being delivered normally and without issues. If there is a need for intervention during the pregnancy, they can do an procedure where the doctors do surgery on mom, take the baby out halfway, surgery on the baby, and then put the baby back and close mom up and let the baby continue to grow in utero. Amazing stuff.
CHOP specializes in lots of different childhood issues including cancers. The nurses told us- if you have to be here for something, a CCAM is what you want to be here for, because most of the time it turns out well. Which is a far cry from what the JH "specialist" told us. He basically said the baby was as good as dead. This was not the last time doctors gave us bad information or advice. The problem is that so many doctors speak with such conviction and authority that many people just take them at their word and don't get a second opinion or research for themselves.
Bad tests suck for sure, but the moral of the story here is to get a second opinion (or more) any time you have a major medical issue.
Our son is now 11 years old and was delivered at our local hospital with a higher APGAR score than our other 2 boys. If we had not found the CCAM at the ultrasound we would never know he had any issue at all. He has not had any interventions before or since being born.