“I don’t know what’s going on, we’re going to do an emergency c-section.”

After the doctor told me that I watched them wheel Katie out of the delivery room, unconscious, towards the operating room. In the coming hours we would learn about a rare pregnancy complication that we had never heard of before. It’s so rare that it’s not even mentioned in that master guide What to Expect When You’re Expecting or it’s accompanying website.

When Katie reach the OR for the emergency c-section her heart stopped beating, and when they got her heart beating again about 14 minutes later they noticed that her blood was not clotting how it should. This sequence of events are a common presentation of a complication called an Amniotic Fluid Embolism or AFE. This rare complication only happens in about 1 out of every 40,000 pregnancies, and it is often fatal for the mother and/or baby.

An AFE is where something from the amniotic sac makes it into the mother’s blood stream and she has an anaphylactic type reaction. Because of the rarity of the condition and the high fatality rate it is not understood why it happens or what factors, if any, increase the likelihood of an AFE happening. This is a condition that basically all of the nurses we interacted with had only read about in their textbooks and not seen firsthand.

AFEs generally start with cardiac arrest followed by DIC (where the blood doesn’t clot where it should and clots where it shouldn’t). Either one of those conditions by itself would be highly fatal for a pregnant woman, both combined have a high fatality rate and if the mother survives she will end up in the ICU for a period of time. DIC requires what is referred to as a massive transfusion protocol. In Katie’s case she had about 2.5 times her total blood volume transfused into her over the next couple of days.

When the mother’s heart stops oxygen stops going to the baby which can cause brain damage and cause the baby to require resuscitation when the baby is born. We are thankful that while Emily required resuscitation, she was able to undergo treatment to help prevent further brain damage and to give her brain time to heal. (I should also note that an AFE can happen after the baby has already been born).

An AFE is a traumatic experience for all involved—patient, family, doctors, nurses, and other medical staff. There is physical trauma along with psychological trauma. We are thankful for the AFE Foundation which provides support for families dealing with an AFE, as well as championing research into this rare condition and seeking to understand how we can make this already rare disease even rarer, and providing education to hospitals for responding well to an AFE.