Surviving an amniotic fluid embolism (AFE) is a traumatic and life-changing event. As like any near-death trauma, it can result in many challenges both physically and emotionally. These challenges are further complicated by the emotions surrounding the birth of a child; most especially if the child was severely compromised, or worse, did not survive.
Some women will recover quickly. While, for others it may take months or even years.
If you have suffered an AFE and have recently returned home or have a loved one returning home soon, please visit our Families in Healing Helpful Guide for some helpful and timely information.
If you have lost a child due to complications from AFE, please visit our resources for Families Grieving the Loss of an Infant.
The following information is intended to assist you during the months and years after returning home from an AFE. It has been compiled by speaking with families who have experienced an AFE. This is what they found to be most helpful. It is not intended as medical or legal advice and it is always recommended you seek professional guidance with any questions as they relate to your specific situation or condition.
The AFE Foundation recognizes the uniqueness of each woman’s path towards healing. However, there seems to be common questions and concerns that most AFE survivors share. Please visit our FAQ’s (link to FAQ) that addresses many of these topics.
It is HIGHLY recommended you request a FULL copy of your medical records and any and all images from the hospital as soon as possible. Hospitals are only required to keep records for a specific amount of time.
To obtain your records, contact the main hospital phone number and ask to be connected with the records department or visit the hospitals website. You will need to complete a medical information release form. Your records may contain several hundred pages and images. Most often the records department will encourage you to take just the discharge summary, YOU NEED TO HAVE THE COMPLETE FILE. The discharge summary will not list medications or dosages. These are important to have. Most hospitals will charge a fee per page. You have a few options to try to avoid these fees. You may speak with the case manager about how to obtain these and request them at no charge. You may also have your physician request a complete copy and ask them to give it to you. Hospitals typically do this at no charge to the care providers. If you need further assistance requesting or paying for your records please contact us.
Maintain all of your records and images in a box or binder for future reference.
It is common to suffer from Post-Traumatic Stress Disorder (PTSD) and/or Postpartum Depression as a result of experiencing a traumatic childbirth. It is also common for fathers and close family members to suffer from some form of PTSD following AFE.
Post Traumatic Stress Disorder (PTSD)
Postpartum Depression
Organizations offer support to help manage these conditions:
Once discharged from the hospital, medical bills will begin to arrive. Get a large three ring binder to store medical bills and Explanation of Benefits (EOB) and as they come in. If your child was admitted to the NICU, create a separate binder for their bills. This will not be a priority for several months. It is recommended to wait 2-3 months before paying medical bills to allow the insurance company and providers to work out any conflicts or billing issues.
Once this occurs contact the insurance company and request to have one liaison to help manage your case. It is in your and their best interest to have one person be familiar with your claims. Ask for this person’s direct line and email. Email is the preferred method of communication, as it will provide a written record of the correspondence. If the insurance company will not provide a special representative, contact the employer who provides the medical benefits and ask if they have a contact at the company. If this is not an option, ask for a supervisor as they often have more authority and access to more information. Make notes in the binder for each conversation with the insurance company. Write down the date, time, name and ID of each representative and what was discussed.
If someone other than the patient is managing the medical bills be sure to ask the insurance company how to establish authority to discuss claims and coverage as your loved one is unable to do so themselves.
For more information about how to understand your medical bills and explanation of benefits visit the following helpful websites.
The AFE Foundation has created a support group for anyone who has been affected by AFE. With over 800 members, the group has helped women and family members connect with other who truly understand the challenges faced after surviving AFE.
Here is what some of the members of our support group are saying.
Being a member of the AFE group has helped me understand that I am not alone in my recovery. It has helped me put my challenges into perspective and realize that there are so many different levels of suffering. This group has provided a place that I feel is safe to put all of my feelings out there because I know each and every one of you will understand and for that, I am so grateful.
-Donna F., suffered AFE in 2000
I felt so alone, empty, confused, and angry before I joined this group. Without this group I wouldn’t have been able to cope on my own. My husband and my family are not able to talk about the event. The women in the group have been a constant source of comfort after losing my child from AFE.
-Carol D., suffered AFE in 2006
It’s so difficult to talk to anyone outside of the group about the experience. However, I know I can openly discuss within the group if I need to with people who understand and care.
-Laura P., suffered AFE in 2009
There is an immediate bond and understanding between us. Suffering an AFE is such an utterly frightening and unexpected experience. I felt my world tilted off its axis. Finding this group put my world back in order. I realized it wasn’t anything I had done and that I am not alone in my healing. I take such complete comfort from the deep friendships I have with women who totally understand how I feel and I know we will always be there for each other.
-Melanie S., suffered AFE in 2006
To connect with our support group you must be a member of Facebook. If you are not a member of Facebook but would like to connect with others who have experienced AFE, please send us a message (link to contact us form) and we will help connect you.
Additional stories of women who have suffered AFE can be found on our site as well.
Some AFE survivors have gone on to document their stories in a book. While they all have unique stories and come from a different perspective, they provide a great deal of comfort in knowing you are not alone.
One of the primary goals of the AFE Foundation is to spur clinical research on amniotic fluid embolism (AFE). While there is little research currently being done on AFE, the AFE Foundation is in the process of organizing the AFE Foundation Patient Registry. This registry will be an international patient registry developed and maintained in collaboration with well respected university in the US. This registry will be the only active registry in the United States for AFE cases both domestically and internationally.
The AFE Foundation Patient Registry will allow for greater visibility into incidence rates, survival rates and commonalities amongst those affected. Additionally, it will provide a comprehensive database that will be used as the basis for 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.
In order to develop this registry we must show the university and researchers we have a critical mass of patients interested in learning more about submitting their case for entry into the registry. To show we have substantial support we are asking the following individuals to complete the AFE Foundation Database Contact Information
Form:
-been diagnosed with AFE,
-think you may have experienced an AFE, or
-lost a loved one from complications of an AFE
Information provided will not be shared with any other organization or used for research without that individuals expressed written consent. For more information, please view our privacy policy.
Download the AFE Foundation Database Contact Information Form and email it back to info@afesupport.org or contact us with any questions or comments.
If you have a loved one who has experienced amniotic fluid embolism (AFE) and is returning home we are here to help. AFE can have lasting physical and emotional affects.
Amniotic fluid embolism (AFE) strikes unexpectedly and can have a tremendous impact on everyone involved. Family members facing a medical crisis are often emotionally overwhelmed and unable to use traditional coping skills and problem solving.
The following information is intended to assist you during the time immediately following AFE. This guide is for patients still hospitalized and has been compiled by speaking with families who have experienced AFE and is what they found most helpful. It is not intended as medical or legal advice and it is always recommended you seek professional guidance with any questions as they relate to your specific situation or condition.
We recognize that every situation is unique and the following is not all-inclusive. We encourage you to reach out to us at any point to assist you with your particular needs or questions.
Click here to download the guide for women returning home after AFE.
Your loved one may qualify for extra time off of work and/or monetary support from various governmental agencies. It is important to understand what benefits are available to you.
If you live in the US, the OBGYN in charge of the care or the hospital where the AFE occurred can provide the necessary paperwork to place a disability claim. Visit the Social Security site for more information about disability benefits.
Additional assistance may be available through the Family and Medical Leave Act (FMLA).
If there is greater need for financial assistance there are a variety of programs available to help subsidize food, formula, medical coverage and daycare assistance through the Women’s Infants and Children (WIC) program.
2-1-1 is a national organization that can help connect individuals to resources in selected communities throughout the US and Canada. To see if your city is listed, visit 211.org. If your city is listed, dial 211 from your phone to be connected with a representative who will listen to your needs and connect you with the appropriate local organizations.
For information regarding governmental support in the United Kingdom visit Directgov
For information regarding governmental support in Australia visit Centrelink
Check to see if your employer offers an Employee Assistance Program (EAP). EAP’s are intended to help employees deal with personal problems that might adversely impact their work performance, health, and overall well-being. EAP’s generally include short-term counseling and referral services for employees and their household members.
Some employers will allow fellow employees to donate time off to employees in need. Check to see if this is available. If so, consider asking a close colleague or manager to send an email to other employees on your behalf.
Don’t be afraid to speak up and ask for what you need from your employer. Severe complications during childbirth are rare and your employer may not have a precedent for dealing with the situation.
Be sure to contact the employer that provides the health care benefits to add your new baby to the health insurance policy. Obtain a full copy of the benefits package and a copy of the “summary plan” document. These will clearly identify the benefits and programs available to you.
Once discharged from the hospital, medical bills will begin to arrive. Get a large three ring binder to store medical bills and Explanation of Benefits (EOB) and as they come in. If your child was admitted to the NICU, create a separate binder for their bills. This will not be a priority for several months. It is recommended to wait 2-3 months before paying medical bills to allow the insurance company and providers to work out any conflicts or billing issues.
Once this occurs contact the insurance company and request to have one liaison to help manage your case. It is in your and their best interest to have one person be familiar with your claims. Ask for this person’s direct line and email. Email is the preferred method of communication, as it will provide a written record of the correspondence. If the insurance company will not provide a special representative, contact the employer who provides the medical benefits and ask if they have a contact at the company. If this is not an option, ask for a supervisor as they often have more authority and access to more information. Make notes in the binder for each conversation with the insurance company. Write down the date, time, name and ID of each representative and what was discussed.
If someone other than your loved one is managing the medical bills be sure to ask the insurance company how to establish authority to discuss claims and coverage as your loved one is unable to do so themselves.
For more information about how to understand your medical bills and explanation of benefits visit the following helpful websites.
It is also HIGHLY recommended you request a FULL copy of your medical records and any and all images from the hospital as soon as possible. Hospitals are only required to keep records for a specific amount of time.
To obtain your records, contact the main hospital phone number and ask to be connected with the records department or visit the hospitals website. You will need to complete a medical information release form. Your records may contain several hundred pages and images. Most often the records department will encourage you to take just the discharge summary, YOU NEED TO HAVE THE COMPLETE FILE. The discharge summary will not list medications or dosages. These are important to have. Most hospitals will charge a fee per page. You have a few options to try to avoid these fees. You may speak with the case manager about how to obtain these and request them at no charge. You may also have your physician request a complete copy and ask them to give it to you. Hospitals typically do this at no charge to the care providers. If you need further assistance requesting or paying for your records please contact us.
Maintain all of your records and images in a box or binder for future reference.
One of the greatest challenges of AFE is the lack of understanding that accompanies it. This also impacts the management of potential complications that arise in the weeks, months and years following AFE. Some women are able to make a full recovery while others will struggle with various health issues. It can be extremely challenging to find the right team of doctors to help care for your loved one once she returns home. You may want to ask the physicians in the hospital if they also are in private practice or for a recommendation of care providers in the area.
Your loved one will continue to be under the care of an OBGYN but may need other specialists to address complications from the AFE. Many AFE survivors report being under the care of various specialists. These may include but are not limited to cardiologists, neurologists, pulmonologists, hematologists, nephrologists, psychiatrists, and primary care physicians. It is recommended you have one physician manage your care and receive all reports from the other specialists. Communication between these doctors is essential so they can work together to determine the best course of action. If they are unwilling to send reports to another physician, obtain a copy of your records from each visit. Add these to your medical information binder with your hospital records.
Be sure to have the primary physician in charge of your care also request copies of your complete medical records from the hospital.
It is common to suffer from Post-Traumatic Stress Disorder (PTSD) and/or Postpartum Depression as a result of experiencing a traumatic childbirth. It is also common for fathers and close family members to suffer from some form of PTSD following AFE.
For more information about PTSD visit the following helpful links:
For more information about Postpartum Depression visit these helpful links.
The following organizations offer support to help manage these conditions:
Surviving an amniotic fluid embolism (AFE) is a traumatic and life-altering event. As like any near-death trauma, it can result in many challenges both physically and emotionally. These challenges are further complicated by the emotions surrounding the birth and sudden loss of a child.
Below are resources to help you and your family through the loss and devastation of losing a child during or shortly after childbirth.
In order to better serve the need of all those affected by AFE, the AFE Foundation is currently gathering helpful information to those suffering brain injury as a result of an AFE. We thank you for your patience as we develop the content. For immediate help please contact Miranda Klassen at 619-820-3383.