Diagnosis
Well, July was a difficult month. After a routine midwife appointment, we were scheduled for an emergency ultrasound because of bleeding and inability to find a fetal heartbeat. Looking back, I could wish that we had refused the ultrasound, since no matter what we were going to continue the pregnancy, but then we would have had less time to prepare ourselves. Abnormalities spotted in the first ultrasound caused our referral to a perinatologist's office, where the baby was diagnosed with Cantrell's Pentalogy. Normally I would insert a helpful link here, but there are few sites that describe this extremely rare syndrome (~6 in one million, which includes milder variants of the disease). So, here is what I have found out so far: Pentalogy of Cantrell comprises five symptoms (hence the name).

1. Omphalocele
-protrusion of variable amounts of abdominal content into the umbilical cord
-our baby's omphalocele contains her stomach, intestines, and liver, as well as most of her heart (see 3,4, and 5)
2. Hole in the diaphragm
-intact diaphragms separate abdominal contents from the lungs and heart, allowing each section the room it needs to develop properly
-this condition can lead to underdevelopment of the lungs
-we don't know yet if our baby has this, but it is very likely, given the structure of the omphalocele
3. Heart defects
-a wide range of heart defects is common in these cases
-the baby's heart will not be large enough for some time for the doctors to diagnose the extent of the damage to the heart
4. Defects of the breastbone
-can be cleft, underdeveloped, or missing altogether
-our baby seems to have misplaced hers altogether
5. Heart outside of the chest
-called ectopia cordis, known from ancient times (get ready for a drought, everybody), can include some or all of the heart, very poor prognosis
-not one to do things by halves, our baby's entire heart lies outside her chest, due to the missing breastbone

So, after having read this, you know nearly as much about the situation as we do. The perinatologist has told us that this combination of defects is incompatible with life. While I have found cases in which one or two of the above was successfully addressed, I have seen nothing regarding a case anywhere near the severity level of our baby.

Thank you all for your prayers. We will try to keep you updated if we learn any new information.