It's Finished

Today we went to the children's hospital for Aubree's autopsy report. I nearly burst into tears walking in to that place, but managed to hold it together. I was able to see the same doc that had treated me and the same neonatologist that was with us when Aubree was born (he personally took her back to the children's hospital for the autopsy when we left the hospital). Seriously, I have never had such a wonderful caring team of doctors before. The actual autopsy showed that she passed away due to her heart stopping, which is what we had suspected. It was only beating at 37 bpm the last time we had seen her on ultrasound so this wasn't a surprise. They did find some other things wrong with her heart that couldn't be seen on the ultrasounds and her other organs had issues related to her heterotaxy. But nothing really significant in light of her more complex issues. The placenta tested fine and there were no clots or infection found that would have contributed to her passing or cause concern for future pregnancies. Most of my questions were for the geneticist. She said that Aubree got two defective "nodal" genes, one each from DH and I. The nodal gene is what tells things where to go early in development when there are just a couple of cells. Having one defective gene is apparently really common, but having two could have caused Aubree's severe heterotaxy (but they can't be certain since apparently there are 60 genes that determine "sided-ness" and they only can test for a few).

It was recommended that DH, Aly, and I get heart echos and ultrasounds of our abdomens to see if any of us have misplaced organs. If we do, our chances of having another baby with heterotaxy are about 50% since DH and I both seem to have this defective gene. If not, then our chances of having another baby with heterotaxy go down about to 5%. Even if we do have misplaced organs (meaning we also have heterotaxy), most forms of heterotaxy are compatible with life and things would most likely be just fine. The chances of having another baby with issues as severe as hers (the worst scenario of heterotaxy known) is still around 1%. So we will do the tests - mainly because we have reached our max OOP and I really want to know that Aly is ok, and that DH and I are ok. But in all likelihood we won't have to worry about this issue again. Unless we hit the freakin' genetic lottery. In which case, we should also hit the real lottery just to even out the karma scales.

The doctors all said they can't tell us when to try again, but that they all personally think we are good to go whenever we feel ready. And they said that my regular OB can schedule all my ultrasounds at CMH in the fetal health center and they routinely assist with care for healthy babies after situations like ours. So we will for sure do our 12-week scan and 20-week anatomy scan there, with an additional heart echo around 24 weeks just to be completely sure.

I went in to today with a really heavy heart, but I walked out of that hospital with a sense of relief and a feeling of closure. Her due-date was yesterday, and her autopsy today. Aly was born the day after her due date and I'd had in my mind that Aubree should have been born the day after her "due date."  The autopsy report feels like the last official thing we did for Aubree as her parents. Now life can move on.