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Amniotic Fluid Embolism FAQs



IMPORTANT NOTICE

The information provided on this website is not intended to serve as medical advice. It has been compiled for your general information only. Read our important disclaimer which contains the terms & conditions that apply to you whenever you visit our website.

About the Foundation

What is the AFE Foundation?

The AFE Foundation is the only patient advocacy organization of its kind, serving those affected by or interested in the maternal complication known as an amniotic fluid embolism (AFE). It is run solely by volunteers and governed by a board of directors and a medical advisory committee. The board and medical advisory committee are composed of individuals affected by AFE, respected physicians, nurses and expert researchers. The AFE Foundation also collaborates with other non-profit organizations, governmental agencies, prestigious academic institutions and corporate partners to help carry out our mission and vision.

Our mission is to spur research, raise public awareness and provide support for those whose lives have been touched by the often-fatal maternal health complication known as amniotic fluid embolism (AFE).

Our vision is that AFE is understood and preventable, thus resulting in a noticeable reduction in maternal and fetal death globally.

How is the AFE Foundation funded?

The AFE Foundation has no paid employees and no paid board or committee members. The organization is run solely through the efforts of volunteers. Contributions from individuals and corporations are imperative to our success. To support our cause please click here.

How are the funds used?

All funds received go directly toward funding and achieving the strategic goals of our organization. All funds are placed into a general fund unless designated by the donor for a particular purpose.

Currently, our funding is supporting the strategic goals established for the 2013 fiscal year. These initiatives include; updating the website and increasing our visibility through search engine optimization, the advancement of research through the establishment of the AFE Foundation Patient Registry, and a national PR campaign for Mother’s Day 2013.

AFE Foundation Website

The newly enhanced website is the leading source of information about amniotic fluid embolism.  It offers access to information and much-needed support for families who are dealing with the challenges faced after experiencing an AFE. However, there is still a great deal of room for enhancements. These enhancements include a provider portal featuring the most up to date, accurate information on current and past research, as well as protocols and standards of care that are unique to AFE patients. Additionally, a comprehensive library of AFE related research articles is in development. Ongoing costs associated with our website include development, design, hosting, domain fees, and consultation fees search engine optimization.

Research
The majority of our funds are currently being used towards our research efforts. We are in the process of finalizing the details of our first research initiative with Baylor College of Medicine/Texas Children’s Hospital in Houston, Texas. This initiative will be announced in May 2013. The costs associated with this research are substantial and ongoing fundraising will be necessary for us to continue this project.

Mother’s Day Campaign for Pregnancy Awareness Month
May is pregnancy awareness month and we are working with a professional public relations firm to help us gain visibility through print, television and online media.

In addition to strategic goals detailed above, the operational costs associated with running the AFE Foundation have and will continue to include the following:

  • Legal Costs – Development and consultation regarding corporate documents including articles of incorporation, bylaws, conflict of interest policy, privacy policy, confidentiality agreement, trademark registration and contract reviews.
  • Trademark Costs – Our name and logo are US registered trademarks. The costs to register included the application fee and associated legal fees. Potential funds may be used to enforce such trademarks should they be compromised or used without our consent.
  • Travel Expenses- Cost of travel and accommodations for board members to attend medical and research conferences, speaking engagements,  and any other organizational business as deemed necessary.
  • Supplies – Business Cards, Letterhead, Envelopes, Banners and Tradeshow materials.
  • Post Office Box - The organization does not have a physical office and uses an established mail delivery service to manage our correspondence for a nominal monthly fee.
  • Financial Support – We hope in the future to be able to provide financial assistance to families in need.
  • Flowers - When notified of a loss the AFE Foundation will try to send flowers if appropriate.
  • Dining – Dining expenses are limited to meetings that include our medical advisory board or strategic planning sessions with our research team. We also co-hosted a dinner in conjunction with our Runnin’ 4 Rocco fundraiser in Baltimore last fall where several families who have been affected by AFE were able to attend and meet with one another. We hope to host more of these events in the future so families can connect in person.

Is the AFE Foundation a not-for-profit organization?

Yes, the AFE Foundation is organized and registered as a California Not for Profit Corporation. The AFE Foundation is a recognized tax-exempt organization with IRS and all contributions made are considered tax deductible. Our TAX ID number is 26-4207421. Contributions made prior to our exempt status (2012) have also qualified for exemption; thus if you have previously contributed from January 2009-2011, please contact us for an acknowledgment letter. We encourage you to consult with your tax advisor with any tax related questions regarding financial contributions.

Is the AFE Foundation affiliated with other organizations?

The AFE Foundation is proud to be in correspondence or collaboration with the following organizations and institutions:

  • Association of Women’s Health, Obstetrics and Neonatal Nurses (AWHONN)
  • American Congress of Obstetrics and Gynecologists (ACOG)
  • Baylor College of Medicine
  • Society for Maternal and Fetal Medicine (SMFM)
  • The National Institutes of Health (NIH)
  • National Organization for Rare Disorder (NORD)

Do you have a privacy policy?

The AFE Foundation has created a privacy policy and terms of use to demonstrate our commitment to the privacy of those visiting our site. Our site contains many links to external sites, which do not fall under our domain

What type of support does the AFE Foundation provide?

Suffering AFE can lead to many different outcomes that range from the most severe, death of the mother and/or death of the infant, to the best possible outcome, a full recovery for the mother and infant.
Each person (patient, spouse, family members, friends, health care providers, etc.) affected by AFE has their own story and will have their own unique path to healing—physically, emotionally, and even spiritually. Feelings of confusion, isolation, grief and post-traumatic stress are to be expected after suffering or witnessing a traumatic event. These feelings may be compounded by the range of emotions surrounding the birth of child. The AFE Foundation offers several types of support for those affected by AFE.

Emotional Support
While there are many ways to seek comfort after such an event, we have found the most common needs among those who have experienced or are affected by AFE are to learn more about the condition and to connect with others who have also been affected.

If you currently have a loved one who remains hospitalized after experiencing an AFE and need immediate support, please see our Families in Crisis informational guide.

We also provide a wide variety of resources for families and individuals dealing with the myriad of issues surrounding AFE. These include managing grief, post-traumatic stress, postpartum depression, anxiety, and financial assistance. Please see our Resources page for more specific information.

The introduction of technology and social media has allowed those affected by AFE the ability to connect and communicate with others from all over the world. We offer several groups on Facebook for those affected by AFE to share and seek comfort from one another. The support groups are described below. If you are not a member of Facebook and would like to connect with others, please contact us.

AFE Foundation Support Group
This group provides a forum for those who have been affected by AFE to share in their experiences and connect with others. The group is a closed group to ensure the members posts are only available for others members to see. This group was established and is moderated by the AFE Foundation.

AFE Foundation Grieving Fathers Support Group is for fathers who have lost a spouse or partner to AFE, this group provides a forum for sharing in grief, seeking comfort, and asking questions of others in similar circumstances. Our hope is that this group will prove helpful in the days, weeks, months and years following your loss. The group is a closed group to ensure the members posts are only available for others members to see. This group was established and is moderated by the AFE Foundation.

AFE Foundation Grieving Family Support Group is for family members who have lost a loved one to AFE. This group provides a forum for sharing in grief, seeking comfort, and asking questions of others in similar circumstances. Our hope is that this group will prove helpful in the days, weeks, months and years following your loss. This group was established and is moderated by the AFE Foundation. It is a closed group, meaning members’ posts are only visible to the other members of the group, and not to the public.

Financial Support
We hope in the future to be able to provide financial assistance to families in financial need assistance after experiencing an AFE. Financial support will go to assist in the costs associated with housing, food or medical needs. Please visit our Resources page for helpful links to a variety of financial assistance through governmental agencies and other organizations.

 

About AFE

What is an amniotic fluid embolism?

Amniotic fluid embolism (also referred to as anaphylactoid syndrome of pregnancy) is most commonly referred to it in its abbreviated form, AFE. Originally defined as a disease in 1941, it remains an unpreventable, unpredictable and often-fatal complication of pregnancy.

AFE is characterized by acute and rapid collapse of mother and/or baby as a result of an allergic-like reaction to amniotic fluid entering the maternal circulatory system. It is important to note that many laboring mothers have amniotic fluid or fetal debris enter into their circulatory system and do not suffer such a response. It is most generally defined as a two-phase response:

  • The first phase is characterized by rapid respiratory failure and cardiac arrest. It is noted most fatalities from AFE occur during the first phase.
  • The second phase is known as the hemorrhagic phase. The mother begins to bleed profusely at the wound site; typically at the site of placental attachment or cesarean incision. Disseminated intravascular coagulopathy (DIC) or consumptive coagulopathy develops, which prevent coagulation.

What are the signs and symptoms of AFE?

Some early signs and symptoms of AFE may include some or all of the following:

  • Agitation
  • Fetal distress
  • Increased anxiety
  • Nausea or vomiting
  • Shortness of breath
  • Skin discoloration

These can then lead to more serious and acute symptoms including:

  • Seizure
  • Cardiac Arrest
  • Coma

When does AFE occur?

AFE 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, AFE can also occur during abortion or amniocentesis.

What treatments are available for AFE?

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.

What causes AFE?

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

What are the risk factors for AFE?

There is great uncertainty in the area of risk factors. 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 AFE

How common is AFE?

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 1 in 15,200 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.

What is the likelihood of surviving AFE?

Although the incidence of AFE is considered rare, it is a leading cause of maternal death globally. Research indicates that AFE is the leading cause of maternal death in Australia and Japan, the second leading cause of maternal death in the United States and the United Kingdom, and the third leading cause of maternal death in France and Poland.

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 multisystem organ failure. It is estimated that 50% of those who do not survive, will die within the first hour of symptom onset. Thus, implying rapid response and aggressive life saving measure are imperative to survivability. 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 use 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.

What are the long-term complications for mothers and babies?

Among the survivors of AFE, most will experience long term or lifelong complications. 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 experience lasting emotional effects after this traumatic event. Feelings of confusion, isolation, anxiety, postpartum depression and post-traumatic stress are common. Seeking support and treatment for mental health issues is a very important aspect of the overall recovery process, and we recommend that women consult with their health care providers for mental health resources. Our AFE Survivor page contains information on resources related to grieving, post-traumatic stress, postpartum depression, and other important issues.

Where can I learn more about AFE?

We hope to offer the most current and accurate information throughout the website, including a comprehensive list of articles written about AFE.

Is there a link between AFE and induction?

There has been a great deal of interest on the issue of induction as a potential risk factor for AFE. The AFE Foundation looks to the organizations that have the most current and accurate information to help us base our position on induction, such as the Society for Maternal Fetal Medicine (SMFM), American Congress of Obstetricians and Gynecologists (ACOG), Association of Women’s Health and Neonatal Nurses (AWHONN) and the California Maternal Quality Care Collaborative (CMQCC) to name a few.

The origin and intent of induction was meant to help save lives, not compromise a mother or baby’s health or worse, cause death. It has become increasingly used as convenience and it is clear that the number of complications has increased with it. The research on the relationship between AFE and induction is inconclusive. Some research suggests a correlation between AFE and induction, and even some medications used for induction list AFE as an associated complication. Other data, however, shows no direct correlation.

Until more conclusive research is completed, the AFE Foundation is reluctant to take a position on the relationship between induction and the occurrence of AFE.

We hope that through our registry and research efforts that we will be able to more accurately discuss inductions rates as they relate to the occurrence of AFE. If you would like more information about the registry and how to submit your case, please visit our Research page.

What information is available about pregnancy after AFE?

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.

What can we do about AFE?

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 could 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 any 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.

What research is currently being done on AFE?

While there is little research currently being done on AFE, we are in the process of organizing an 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 to download the AFE Foundation Database Contact Information Form.

How can I honor my loved one who has experienced AFE?

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.

Didn’t find the answers you were seeking? If you have additional questions or needs, please contact us.