Research Needed on Rare but Deadly Pregnancy Complication

By Kristine Hartvigsen on March 27th, 2017

Probably what’s most scary about Amniotic Fluid Embolism (AFE) is its stealth. There’s no way to predict or prevent it. There’s no cure. AFE occurs in 1 in 40,000 births. More than 40% of young mothers who experience AFE and 65% of infants in utero will not survive. To date, there is precious little research to prevent or improve mortality for AFE.

AFE — also known as “anaphylactoid syndrome of pregnancy” — occurs when a woman develops a serious, sudden allergic-like reaction to amniotic fluid entering her bloodstream during or shortly after childbirth (regardless of whether delivery is vaginal or cesarean). The mother generally experiences a sudden drop in blood pressure and has difficulty breathing that rapidly progresses to respiratory failure and cardiac arrest. If she survives this initial complication of AFE, she then likely will develop uncontrollable bleeding, and her blood may lose its ability to clot, bringing further peril to the situation. It is among the leading causes of maternal death in the United States.

Women who survive AFE often have lifelong challenges such as neurological impairment, organ damage, and memory loss. Survivors also often suffer varying degrees of treatable emotional trauma. Surviving infants also may develop mild to severe neurological issues.

Miranda Klassen of San Diego is an AFE survivor. In 2008, while giving birth to a healthy son, she had a seizure followed by heart and lung failure. She spent the next two days in a medically induced coma so that a machine could breathe for her. She was lucky to survive and, after eight days in the hospital, was discharged with heart and kidney damage that will require monitoring and treatment for the rest of her life. She also is not able to have any more children.

As Miranda learned more about AFE, she became an advocate for mothers and families affected by AFE. Within a year, she had established the Amniotic Fluid Embolism Foundation (AFEF), a non-profit organization that raises awareness about AFE, provides support to AFE families, and pursues funding for AFE research.

Without research, medical experts can only speculate on AFE causes and risk factors. One theory is that a breakdown in the placental barrier, which can happen as a result of trauma, releases amniotic fluid into the mother’s bloodstream, triggering an inflammatory immune system reaction. Doctors suspect that women may be at heightened risk if they: are older than 35, have a forceps or cesarean delivery, are carrying more than one fetus, sustain some sort of abdominal injury, develop polyhydramnios (too much fluid around the fetus), suffer placenta previa or placental abruption, or are induced. Theories aside, AFE remains a frightening medical mystery, and research is desperately needed.

With an eye toward supporting AFE research, AFEF created the AFE Registry at Baylor College of Medicine. It has grown into the world’s largest AFE research database and serves as a foundation for clinical research.

Today is AFE Awareness Day. Women who have experienced AFE in a previous pregnancy and wish to conceive again should consult with a maternal-fetal medicine physician. The medical community’s knowledge about AFE is limited so far. Research is necessary to better understand AFE, to identify ways to prevent it, and to treat it once it has occurred so that both mother and child have the best chance to survive AFE with minimal problems.

This blog provides general information and discussion about healthcare-related subjects. The content and linked materials provided are not intended and should not be construed as medical advice. If the reader is an expectant mother with a medical concern, she should consult with an appropriately licensed physician or healthcare provider.

 

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