Autopsy Results: Hyper-Coiled Cord

Two weeks ago, we were shocked to find out that Haven's autopsy/pathology report turned up a cause of death. From the day she died and onward, we had prepared ourselves to to hear that they couldn't find a cause, because, in most cases like ours, they don't find one. All of the nurses and doctors had told us that we would likely never know.

The report said that she was a perfect, healthy baby girl (which we knew), but that her cord was abnormal. It was hyper-coiled, meaning that the cord had way too many coils in it. The nurses didn't catch it when they delivered her, and even specifically said that it looked normal. The coiling doesn't seem to have caused a problem until the end, because she was a normal weight and had developed perfectly. There were areas of low Wharton's jelly (meaning the veins were less protected), and there was clotting, swelling, and fibroids in the cord, so it looks like at some point (probably in the last few days), blood started being restricted, then was cut off. The hyperactivity the night before we found out she was gone was probably her dying due to lack of oxygen. My theory is that, when she changed sides of my belly about a week before, that put her into a position where she ended up leaning on the cord, cutting off blood flow. I had a bad feeling about it at the time, but my doctor didn't seem concerned. And for any normal pregnancy, it wouldn't have been cause for concern. Hindsight is 20/20.

Research indicates that mothers tend to produce the same types of cords with subsequent babies, but it's not guaranteed. And another cord like it would not necessarily be fatal, though it would be dangerous. There is no prevention of hyper-coiling; it happens very early on. There are only two theories: one is that it is caused by the embryonic/fetal movements when the cord is developing, or that it is caused by uneven blood flow. Diabetics and cocaine users are more likely to have this happen, but I am neither of those things. All I can really do is keep in good health and hope for the best the next time around. There is some indication that they can look for it on ultrasound and test blood flow with cord Doppler testing, so I am hopeful that we'll have luck with that. I also hope that we will be very closely monitored. I plan to go off work much earlier the next time so that I can focus on being healthy and rested, and so I can more carefully monitor the baby myself.

We will be seeing a specialist in a few months to go over the report in more detail and to learn about our odds of recurrence, as well as what the plan will be the next time I am pregnant. It may be up to six months until then. I hate how slowly the medical world moves sometimes.

I can write all of that in such a clinical way because I'm still a little in shock over it. That's why I waited two weeks to share it here. Even our OB was very surprised by the report, as it didn't seem like we would ever know.

We really thought it would make us feel better to know why she died. I think it did, in a way, because it has given closure, and will continue to do so. I don't regret the autopsy, but it was very emotional hearing the details at the doctor's office. We were shocked, first and foremost, but hearing the details and picturing our poor girl being in such trouble without us knowing...that hurt. Knowing she was perfect but just terribly unlucky...I don't know if that makes us feel better or worse. Or both. Grief over losing a child causes the most paradoxical and illogical thoughts I have ever experienced.

We left the office and drove straight to the grocery and liquor stores, where we bought a lot of alcohol and food, then proceeded to eat our faces off and drink a bottle of wine each. We even bought a pack of smokes (we don't smoke) and had a bunch of those. Was that destructive? Probably. But it did make us feel a little better at the time.

So that's our story. Anyone else have experience with hyper-coiled cords? I'd love to hear your stories and/or to hear of any advice or information you received regarding subsequent pregnancy. It seems fairly rare among causes of stillbirth, so there is not a lot of information out there.