Inside the Survivor’s Guide
Frequently Asked Questions about AFE
Amniotic fluid embolism is a complex medical condition that can be difficult to understand. We have such little information about it. Below, are answers to frequently asked questions.
What is an amniotic fluid embolism and how is it treated?
Although the exact mechanism of how an amniotic fluid embolism (AFE) occurs is not well understood. It is believed to occur when a mother suffers an allergic-like (immune) response to amniotic fluid and fetal material that enters her bloodstream during labor or shortly after delivery. It is important to note that the entrance of amniotic fluid and fetal material into the bloodstream is a normal part of the birth process and in most women, it does not cause this serious reaction.
Most often an AFE involves two very serious and life-threatening complications; heart and lung failure (cardiorespiratory collapse) and severe bleeding (disseminated intravascular coagulopathy or DIC). Independently, each of these complications is extremely serious and life-threatening. Together, they are exceptionally challenging to treat and require immediate and aggressive medical care.
Heart and lung failure causes breathing problems, irregular heartbeat, seizures, and can lead to cardiac arrest- when the heart stops beating. When the heart stops beating it is no longer able to send oxygenated blood to the body. Lack of oxygen to the body can cause organ failure and brain damage.
Treatment of heart and lung failure includes oxygenating the body by placing a breathing tube (intubation), cardiopulmonary resuscitation (CPR), and medications to help manage blood pressure and help the heart beat regularly.
Bleeding is a normal process of birth. However, in women who experience an AFE, the blood’s normal balance (hemostasis) is interrupted by a complicated process causing sudden and excessive bleeding (hemorrhage). This can lead to a condition known as disseminated intravascular coagulopathy (DIC). DIC causes the over-development of blood clots throughout the bloodstream. This increased clotting quickly depletes the body’s platelets and clotting factors that are needed to control bleeding. Excessive bleeding and clotting may lead to more serious complications including stroke, organ failure, and ultimately heart failure.
Treatment of hemorrhage and DIC includes blood transfusions, surgical procedures, and medications to help control bleeding and replenish the body’s blood volume.
Advances in critical care medicine offer more complex interventions, although not all hospitals have access to these types of treatments.
What are the signs and symptoms of amniotic fluid embolism?
Early signs and symptoms of amniotic fluid embolism develop suddenly and may include:
- Increased anxiety
- An impending sense of doom
- Fetal distress
- Agitation
- Confusion
- Nausea or vomiting
- Chills
- Skin discoloration
- Shortness of breath
- Abnormal vital signs
These may lead to more serious complications including:
- Loss of consciousness
- Seizure
- Heart and lung failure
- Cardiac arrest
- Excessive and uncontrolled bleeding
- Disseminated intravascular coagulation (DIC)
- Stroke
- Acute respiratory distress syndrome
- Brain damage
- Death
What causes an amniotic fluid embolism?
Recent research suggests that it is most likely caused by an overreaction of a mother’s immune system. These are substances from the mother and/or baby (amniotic fluid, fetal cells, maternal/fetal antigens) that enter her bloodstream during birth, medical procedures, or trauma. These substances often enter the mother’s circulation during birth, but most women do not suffer the same reaction.
Older theories suggested it was the entrance of amniotic fluid into the bloodstream that caused the reaction. Research now shows many are exposed to amniotic fluid in their bloodstream and do not have this same reaction. Another disproven theory was the amniotic fluid and/or fetal cells blocked airflow in the lungs.
Further research is needed to investigate the cause of AFE. Learn more about our research initiatives
When can an amniotic fluid embolism occur?
An amniotic fluid embolism occurs during pregnancy. It can occur during delivery or up to an hour after delivery of the placenta.
It can occur during both vaginal and cesarean births.
It can occur during any pregnancy, whether it is your first or one of many.
Amniotic fluid embolism can also occur during a D&E, amniocentesis, or trauma.
How often does an amniotic fluid embolism occur?
The statistics around the incidence of amniotic fluid embolism vary. The diagnosis of this syndrome remains one of exclusion. It lacks any specific test. A diagnosis of AFE is made after all other reasonable explanations have been ruled out.
The incidence of amniotic fluid embolism may not be recorded accurately.
Recent publications based on data suggest the estimated occurrence of AFE is 2.5 for every 100,000 births. Or 1 in 40,000 in the United States and 1 in 53,800 in Europe.
There are about 4 million deliveries in the United States per year, and 100 women may suffer an AFE. There are about 700,000 deliveries in the UK each year, and around 13 women may experience an AFE.
How is an amniotic fluid embolism diagnosed?
It may take several days, or in cases when the mother passes- months, for a diagnosis to be made. The health care team reviews the case usually in a debrief. They will look at the timing of symptoms and all tests and imaging to rule out any other options.
In fatal cases, an autopsy is recommended. It will aid the team in ruling out any other potential causes. It was once believed that an AFE diagnosis could only be made through autopsy with the presence of fetal material in the lungs or circulation. This is no longer a valid diagnostic criterion. Many women have the presence of fetal material and not have experienced any of the symptoms of an AFE.
What is the survival rate for women who experience an amniotic fluid embolism?
The survivability of an amniotic fluid embolism is dependent upon several factors. It is difficult to provide an accurate rate. These factors include:
- Variability of each woman’s immune response
- Delivery location (home, birth center, hospital)
- Level of the hospital (critical care, NICU, OB on staff 24/7, blood bank, ECMO)
- Timing of the event (before or after delivery)
- The immediacy of recognition and aggressive treatment
- Pre-existing health issues (i.e. hypertension, placental abruption, accreta spectrum disorders, etc.)
- Published rates from studies are inconsistent. They differ depending on how and when the data were collected. Published rates of survivability range from 20-60%.
Survivability has increased over the last 20 years with advances in medicine. However, an AFE is difficult to treat and is considered one of the most fatal birth complications in the world.
Variations of survival are dependent on the above-listed factors. Some women may make a rapid recovery. Others may suffer a stroke, severe hypoxic brain injury, or organ failure. Some may pass within hours of the first symptom.
Does an amniotic fluid embolism affect the baby?
Infants delivered after symptoms might be delivered by emergency c-section, forceps, or vacuum. They may have reduced Apgar scores. They are at risk for decreased oxygen and will require critical care interventions.
Infants will almost always be admitted to the NICU.
The survivability of infants is dependent on their oxygenation levels at delivery. Also their response to medical interventions to minimize damage to the brain.
Infants should be monitored for 6-18 months to ensure they meet developmental milestones.
What are the long term effects for women who survive an amniotic fluid embolism?
What are the long-term effects for women who survive an amniotic fluid embolism?
Many AFE survivors experience long-term or life-long complications that range in severity. These vary depending on the individual’s response to AFE, health, and genetic history to other illnesses. This list of obstacles is feedback from over 1,000 AFE survivors on their physical and mental health.
PHYSICAL HEALTH
- Mild to severe neurologic impairment
- Memory loss or delayed word recall
- Temporary or permanent heart damage
- Complete or partial hysterectomy
- Problems from stroke (decreased gross and fine motor skills, speech, hearing, vision, and gait)
- Sheehan’s syndrome
- Gastrointestinal issues
- Pelvic floor dysfunction
- Nerve pain
- Generalized pain
- Kidney dysfunction requiring dialysis or transplant
MENTAL HEALTH
Most AFE survivors (and those who are closest to them) are at risk for emotional and mental effects.
What are the risk factors for amniotic fluid embolism?
Risk factors for an amniotic fluid embolism are difficult to determine. Occurrences of AFE are infrequent and random making it difficult to study.
Some studies report that AFE is linked with the following:
- Advanced maternal age (35 and older)
- Multiple pregnancies
- Assisted fertility (IVF, IUI, egg and/or sperm donation)
- Placenta previa, placenta accreta, placenta increta or placenta percreta)
- Eclampsia (seizures caused by high blood pressure)
- Polyhydramnios (too much amniotic fluid around the baby during pregnancy)
- Cervical tears
- Uterine rupture,
- C-section
- Other operative-assisted deliveries.
As of now, there are no known risk factors that would alter the course of standard practice.
Can labor induction cause an AFE?
There has been interest in the issue of induction as a potential risk factor for AFE. Research on the relationship between AFE and induction is inconclusive and confusing.
The origin and intent of induction are meant to help save lives. It is to not compromise a mother or baby’s health, or worse, cause death.
Induction of labor has become an adopted practice in modern-day labor and delivery. However, induction is a debated topic as there are benefits as well as risks.
The AFE Foundation looks to the institutions that have the current and accurate information on induction.
This includes:
- Society for Maternal-Fetal Medicine (SMFM)
- American Congress of Obstetricians and Gynecologists (ACOG)
- Association of Women’s Health and Neonatal Nurses (AWHONN)
- California Maternal Quality Care Collaborative (CMQCC).
Some medications used in labor induction will list AFE as a potential risk. These medications are commonplace but used as off-label drugs. This means they were developed for other medical conditions. During the drug development, no studies looked at the use of these medications for labor induction.
Drug companies include a list of potential problems when their drug is used for off-label purposes. This is to remove any potential liability on the drug creator.
Induction of labor may result in a uterine rupture. This has been listed as a contributing factor for AFE in some studies.
Until more research is done, the AFE Foundation is reluctant to take a position on induction.
The decision to induce labor should be made on a personal basis. All information needs to be presented. The risks and benefits to both mother and baby need to be understood and consented to.
Can I have another child after an amniotic fluid embolism?
Research on pregnancy following amniotic fluid embolism is limited. The National Institutes of Health released a review of AFE in 2009. At that time there were nine cases of successful subsequent pregnancies following AFE.
In November 2015, there wasa publication from our patient registry published. It reported 26 out of 80 survivors had conceived with no reported reoccurrence.
The experience of an AFE is a traumatic experience for all parties involved. Deciding whether to become pregnant again can be a difficult decision.
We advise a consultation with a maternal-fetal medicine doctor. MFMs who specialize in high-risk obstetrics. They can review your medical history and provide you with an informed and personalized perspective.
Sometimes a doctor will advise against a future pregnancy because they are unfamiliar with AFE. They may have their own fear and trepidation in being your physician. Or, they may have strong evidence that a subsequent delivery puts you in a high-risk category.
A well-meaning healthcare provider may not have the experience to provide you with sufficient advice. We advise seeking consultation with a few obstetricians or maternal-fetal medicine specialists. This will help to ensure you have the information you need to help make a decision.
Ultimately, it is a personal decision to make. Having the right healthcare team and support from those close to you will allow you to feel confident in your decision.
We also recommend seeking counseling from a trained and licensed birth trauma professional .
If you would like to connect with others who have gone on to have subsequent pregnancies, please join our support group. The group is intended for those interested or who have successfully had a subsequent pregnancy.
There is currently no protocol for subsequent deliveries of AFE survivors. Each case is unique and should be treated as such.
What can I do to help prevent amniotic fluid embolism?
Although having been recognized since the 1920s amniotic fluid embolism remains poorly understood. There is no way to prevent AFE from occurring due to no knowledge of what causes it or how to prevent it.
We know a woman’s greatest chance of survival is to deliver at an equipped hospital. Increasing awareness among the medical community leads to improved outcomes for mothers and infants.
In addition, research is crucial to aid in our knowledge of this enigmatic complication. Research is needed to identify causes, preventative measures, and effective treatments. The Foundation is working hard to advance research, promote education, and elevate awareness. To contribute to the AFE Foundation’s efforts, please consider making a donation or getting involved.
How can I honor a loved one affected by or lost to an amniotic fluid embolism?
Honor a loved one with a donation to the AFE Foundation. Donations can be made as a tribute or Memoriam gift.
Some people have organized fundraising events honoring their loved ones to support the efforts of the AFE Foundation. If you are interested in organizing this type of event please contact us, and we would be happy to help you.