Augustana – Sweet and Low (Acoustic Version)
While this second part should be more about my own opinion on the situation, I felt like an email my wife had sent out to close family and friends would be a bit more appropriate, and most of the words would be spelled correctly in medical terms. I’ll wait for Part 3 to put in my two cents, but below should best explain what we found, and what we weren’t expecting:
We went in for our 20 week ultrasound Tuesday morning. The baby was being a little stubborn with the way he/she was laying, but overall the ultrasound went fine, or so we thought. Our OB then came in and said we needed to be sent to St. John’s for a higher level ultrasound because she was concerned the baby had a diaphragmatic hernia. For those of you who don’t know, this is a very serious condition where the diaphragm does not form properly and basically the organs that are supposed to be in the abdomen grow up into the chest because there is nothing stopping them, thus leaving no room for the lungs to grow, i.e. big problem. It is something that I see in the NICU every once in awhile and it is not a great diagnosis. Obviously, this is something we were not expecting, so they sent us over to the perinatal center at St. John’s for another look.
The perinatalogist, Dr. Morris, reviewed another ultrasound and from what he saw, he DID NOT think there was a diaphragmatic hernia (thank God), but there were two spots he saw under the heart that he’s diagnosing as congenital cystic adenomatoid malformation (CCAM). CCAM affects 1 in 25,000 births and has the potential to be life threatening, but Dr. Morris did not seem concerned as of yet, because the cysts do not appear to be affecting the heart. I got an unofficial second opinion at the Fetal Care Institute here at Glennon just today, and Dr. Yang (a pediatric & fetal surgeon whom I respect greatly) agrees that it is in fact a CCAM, but is confident in the fact that it is only in one lobe, and not shifting the heart. He did say, however, that these next 6-8 weeks are very vital as this is when the babies lungs are maturing the fastest, so the cyst has the opportunity to grow at this time as well. I will now have to go to the Fetal Care Institute at Glennon at least every 2 weeks for follow-up ultrasounds to keep measurements of the cysts and monitor any changes they may be causing to the babies anatomy. Overall, there is a pretty good prognosis for this defect, as long as the cysts do not grow and affect the heart, so that is what we’re hoping for. We have decided to be officially referred to the FCI at Glennon for convenience and the fact that I know everyone there. Since we’ve decided to transfer, our birthing “plan” to deliver at St. John’s will be altered because I will actually be delivered by the maternal fetal medicine doctor for the FCI, Dr. Vlastos, so I would have to deliver at St. Mary’s or maybe St. Clare (depending on how sick they think the baby may be). Dr. Yang believes that if the CCAM stays the same size, the baby will probably need surgery within 6 months of life to remove the cyst; but should have a normal recovery and life.
Thanks in advance for the prayers and concern, we are so very lucky to have amazing family and friends. And for you anxious people, we have made the decision to find out the sex at our next ultrasound. For some reason we feel like knowing the sex will somehow make this a little easier to wrap our heads around, plus with ultrasounds every 1-2 weeks, I’m sure it will come out anyway. This is obviously not something we were expecting or hoping for, but we have faith that everything will turn out just fine. We will keep you all updated as we are given more information.
Love,
Andy & Mandi
Here are some websites about CCAM from some hospitals around the country if
you’re interested in learning more:
traveling daddy 