Amniotic fluid embolisms develop suddenly. Early signs and symptoms might include:

• • Increased anxiety
  • Agitation
  • Impending sense of doom
  • Confusion
  • Nausea or vomiting
  • Chills
  • Skin discoloration
  • Shortness of breath
  • Fetal distress
  • Abnormal vital signs

These then lead to more serious symptoms including:

• Loss of consciousness
• Seizure and/or cardiopulmonary arrest
• Bleeding from the uterus, cesarean incision or intravenous (IV) sites (disseminated intravascular coagulopathy)

Amniotic fluid embolism occurs during pregnancy, most often before, during or shortly after delivery. It can occur during both vaginal and cesarean births. Although considered to be rare, amniotic fluid embolism can also occur during abortion or amniocentesis.

Treatment for AFE is entirely supportive, meaning there is no specific way to prevent it or reverse AFE; the focus of treatment is on managing individual symptoms as they occur. Most patients will require multiple blood, plasma and platelet transfusions. A hysterectomy may be required to stop the source of the bleeding. More research is needed to determine the most effective treatments for AFE, so that mothers and infants who experience AFE have improved likelihood of survival with minimal to no complications.

The exact mechanism of what causes AFE is unknown and it remains unpreventable. The most recent research suggests a possible theory that it is an immune-related response to pregnancy associated antigens, although nothing has been done to test this exact theory. Further research is needed to investigate the causes of AFE so that it can be determined if AFE is in any way predictable or preventable

There is great uncertainty in the area of risk factors related to amniotic fluid embolism. In 2009, the National Institutes of Health released a comprehensive review of AFE, stating risk factors were difficult to determine based on poor data collection. The literature on AFE notes advanced maternal age, multiple gestation, placental abnormalities, eclampsia, polyhydramnios, cervical lacerations, uterine rupture, induction medications or procedures, cesarean section and other operative assisted deliveries as possible risk factors for amniotic fluid embolism.

AFE is so rare, most medical professionals learn of it only in textbooks. The statistics around the incidence of AFE vary; recent research suggests that the estimated incidence of AFE is 2.5 in every 100,000 births or 1 in 40,000 deliveries in North America and 1 in 53,800 deliveries in Europe, respectively. There is currently no available data on incidence of AFE in other regions of the world. The true incidence of AFE is difficult to determine because the diagnosis of this syndrome remains one of exclusion, meaning that a diagnosis of AFE is made after all other reasonable explanations have been ruled out.

Although the incidence of amniotic fluid embolism is considered rare, it is a leading cause of maternal death globally. In 2009, the National Institutes of Health released a comprehensive review of AFE. It noted that maternal death due to AFE is typically caused by sudden cardiac arrest, hemorrhage from coagulopathy (DIC), or the development of acute respiratory distress syndrome and/or multi-system organ failure. It is estimated that 50% of those who do not survive, will die within the first hour of symptoms. Thus, underscoring the need for early intervention and aggressive treatments. It is important to note, that even with the best and most responsive care, some women will simply not respond to life saving measures. Greater research is needed to not only determine the root cause of AFE but why some women are at greater risk of death.

Estimates on survival rates vary greatly, largely due to poor reporting and difficulty of diagnosis. AFE has been reported to be up to 80% fatal in women although most recent data suggests that number is closer to 40%. Mortality rates of infants still in the womb during an AFE are as high as 65%. There is even greater uncertainty regarding the neurologic impairment of surviving women and infants. It is clear many women will have a range of neurological injury, ranging from short-term memory loss to complete hypoxic-anoxic brain injury. Infants may delayed development, cerebral palsy or limited brain function.

Among the survivors of amniotic fluid embolism, most will experience long term or lifelong complications that range in severity. These include but are not limited to mild to severe neurologic impairment, memory loss, temporary or permanent heart damage, organ failure, complete or partial hysterectomy and Sheehan’s syndrome. Infants may experience, mild to severe neurologic impairment, including hypoxic ischemic encephalopathy (oxygen deficiency to the brain) and cerebral palsy. Further research is needed to fully understand the potential long-term medical effects of AFE on both mothers and infants.
In addition to medical complications, most AFE survivors (and those close to them) are at greater risk for experience lasting emotional effects after traumatic event. Feelings of confusion, guilt, isolation, anxiety, depression, mood disorders, and post-traumatic stress are extremely common. Seeking support and treatment for mental health is a very important aspect of the overall recovery process. We recommend that all survivors consult with their health care providers for mental health assessments and resources. Our AFE Survivor page contains information on resources related to grieving, post-traumatic stress, postpartum depression, and other important issues.

Research on pregnancy following AFE is very limited. The National Institutes of Health released a comprehensive review of AFE in 2009, and at that time there were nine cases of successful subsequent pregnancies following AFE with no instances of recurrence.

AFE is traumatic for the family, friends and doctors who cared for you as well. Deciding whether to try to have additional children after AFE can be a very difficult decision.

We advise all women considering a subsequent pregnancy to seek a pre-pregnancy consultation with a maternal-fetal medicine doctor (often referred to as a perinatologist) who specializes in high-risk obstetrics. A perinatologist can review your medical history and share a more informed perspective with you. Sometimes a doctor will advise against a future pregnancy because they do not know what will happened fear for your safety and well-being. Even a well-meaning obstetrician may not have the experience to provide with sufficient advice. While this is ultimately a very personal decision and one that no individual will be able to decide for you, a perinatologist can help you weigh your options and, should you become pregnant, can monitor you throughout the pregnancy.

If you would like to connect with others who have gone on to have subsequent pregnancies be sure to join our support group. There you can connect with some of the women that have gone on to have successful pregnancies following AFE.
There is currently no standard of care or protocol for subsequent deliveries. This is something the AFE Foundation hopes to develop in the coming years.

Recently, the AFE Foundation in collaboration with Baylor College of Medicine in Houston, TX launched the first ever international patient registry which will be used as a basis for comprehensive clinical research on AFE. We hope that through our registry and research efforts we will be able to better understand AFE and someday find a way of sparing families from the trauma and devastation AFE causes. Please visit our Research page for more information and how to submit a case into the registry.

Amniotic fluid embolism remains a diagnosis of exclusion; meaning all other possible clinical explanations for the symptoms have been ruled out. It was once believed to be diagnosed only through autopsy based on the presence of fetal material found in the vasculature of the lungs. This is no longer a valid diagnostic criteria.

Sadly, little research has been conducted on AFE and awareness of AFE remains low, even among the medical community. Improving awareness of AFE among health care providers would allow for more prompt recognition and treatment, leading to improved outcomes for mothers and infants. In addition, research is crucial to understanding AFE. Research is needed to identify causes, preventative measures and effective treatments. The Foundation is working hard to spur research and to drive greater awareness to this devastating problem. To contribute to the Foundation’s efforts, please consider getting involved, sharing your story or making a financial contribution.

Donations to support the efforts of the AFE Foundation can be made as a tribute or memoriam gift. Detailed information about making a tribute or memoriam can be found here.

Some individuals have organized fundraising events honoring their loved one to support the efforts of the AFE Foundation. Examples of these events can be found here.

Please contact us if you are interested in organizing this type of event.