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.

Helpful information for the weeks, months and years following AFE:

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:

  • Solace for Mothers is an organization designed for the sole purpose of providing and creating support for women who have experienced traumatic childbirth.
  • The Birth Trauma Association (BTA) a United Kingdom organization that supports all women who have had a traumatic birth experience. It is estimated that, in the UK alone, this may result in 10,000 women a year developing Post-Traumatic Stress Disorder.
  • Postpartum Support International is dedicated to helping women suffering from postpartum depression.
  • Helpguide.org is a non-profit that provides access to helpful information and resources related to various mental, emotional and lifestyle challenges, including Post-Traumatic Stress Disorder and Postpartum Depression

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.

 

  • The AFE Foundation Support Group is for anyone affected by AFE. The group is a private group which means membership is required and content is only accessible by members. This group was established and will be moderated by the AFE Foundation.
  • The AFE Foundation Facebook Page. Please click “Like” on the Foundation’s Facebook page for the most up to date information from the Foundation. You may also click the “Stay Connected” button to receive important communications and updates from the AFE Foundation.
  • The AFE Foundation Blog is a place where those whose lives have been impacted by AFE can share their stories with one another in order to provide greater support and information. Suffering from AFE can be a very lonely, troubling, and frightening experience. This site will provide information about specific cases of AFE as well as what individuals did to cope.
  • Amniotic Fluid Embolism Support Group Australia is a Facebook group for women looking to connect with others in Australia. It is not moderated by the AFE Foundation.

 

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.

Returning Home

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:

  • Solace for Mothers is an organization designed for the sole purpose of providing and creating support for women who have experienced traumatic childbirth. Birth trauma is real and can result from even seemingly “normal” birth experiences.
  • The Birth Trauma Association (BTA)-UK supports all women who have had a traumatic birth experience. It is estimated that, in the UK alone, this may result in 10,000 women a year developing Post-Traumatic Stress Disorder.
  • Postpartum Support International is dedicated to helping women suffering from perinatal mood and anxiety disorders, including postpartum depression, the most common complication of childbirth. They also work to educate family, friends and healthcare providers so that moms and moms-to-be can get the support they need and recover.
  • Helpguide.org is a non-profit that provides access to helpful information and resources related to various mental, emotional and lifestyle challenges, including Post-Traumatic Stress Disorder and Postpartum Depression
  • AFE Foundation Support Group on Facebook
    The AFE Foundation Support Group is for all individuals affected by AFE. The group is a private group which means membership is required and content is only accessible by members.
  • AFE Foundation Blog
    The AFE Foundation Blog is a place where those whose lives have been impacted by AFE can share their stories with one another in order to provide support and information. Suffering from AFE can be a very lonely, troubling, and frightening experience. This site will provide information about specific cases of AFE as well as what individuals did to cope.

Pregnancy After AFE

Content from Miranda

Infant Loss

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.

  • Share Pregnancy and Infant Loss Support, Inc. mission is to serve those whose lives are touched by the tragic death of a baby through early pregnancy loss, stillbirth, or in the first few months of life. Share Pregnancy and Infant Loss is a national organization with approximately 100 chapters throughout the US.
  • The Compassionate Friends organization assists families toward the positive resolution of grief following the death of a child of any age and to provide information to help others be supportive. The organization is national with approximately 600 chapters throughout the country and offers mutual support, friendship and understanding for families grieving the death of a child of any age, from any cause. The Compassionate Friends organization provides information on the grieving process, referrals to local chapter meetings, features an online support community and publishes a quarterly magazine.
  • Aiding Mothers and Fathers Experiencing Neonatal Death (AMEND) is a national organization that offers support and encouragement to parents having a normal grief reaction to the loss of their baby. The group also provides one-to-one peer counseling with trained volunteers.
  • Bereaved Parents of the USA is a national organization with approximately 80 chapters. Designed to aid and support bereaved parents and their families who are struggling to survive their grief after the death of a child. This organization provides information and referrals, newsletters, phone support, conferences and support group meetings and also provides assistance and guidelines in starting support group. Bilingual assistance is available.
  • The M.I.S.S. Foundation is international and is has twenty different affiliated groups. It was founded 1995 and offers emergency and on-going support for families suffering from the loss a child. The organization provides information, referrals, phone support, newsletters, pen pals, literature, advocacy and online chat room support. In addition they offer information on local group development and support such groups by listings them on their website.
  • AGAST International was founded in 1989 and is dedicated to supporting grandparents when a grandchild dies. The organization offers personal support, a literature packet, provides an online message board and newsletter, telephone help and support.
  • Help, Comfort, and Hope After Losing Your Baby In Pregnancy or The First Year by Hannah Lothrop
    Through her own experience with miscarriage as well as through the voices of other parents who have suffered the devastation of their baby’s death, psychologist Hannah Lothrop guides parents through the experience of bereavement, from shock and disbelief to renewal and growth. Thoughtful questions throughout help readers assess their emotions and identify their needs, and an extensive list of resources provides additional sources of support.
  • Empty Cradle, Broken Heart: Surviving the Death of Your Baby by Deborah L. Davis.
    The purpose of this book is to let bereaved parents know that they are not alone in their grief. With factual information and the words and insights of other bereaved parents, you can establish realistic expectations for your grief. Empty Cradle, Broken Heart is meant to help you through these difficult experiences by giving you things to think about, providing suggestions for coping and encouraging you to do what you need to survive your baby’s death. Whether your baby dies recently or long ago, this information can be useful to you.
  • Grieving the Child I Never Knew By Kathe Wunnenberg
    When the anticipation of your child’s birth turns into the grief of miscarriage, tubal pregnancy, stillbirth, or early infant death, no words on earth can ease your loss. But there is strength and encouragement in the wisdom of others who have been there.
  • A Guide for Fathers: When a Baby Dies by Tim Nelson
    This book is for men who experience the death of their infant child. Meant to be a guide during the early hours and days after finding out the news of their baby’s death, the book offers suggestions for communicating with medical caregivers, offering support to their partner, telling the news to other children, making funeral arrangements and taking care of themselves in a time of crisis. It goes on to talk about effective communications during the weeks and months following the loss, going to a support group, returning to the workplace, and the issues surrounding a subsequent pregnancy.
  • Something Happened: A Book for Children and Parents Who Have Experienced Pregnancy Loss by Cathy Blanford
    The book addresses the sadness that a child experiences when the anticipated baby has died. The child’s fears and feelings of guilt are addressed as well as other confusing feelings. Perhaps most important, the book includes the family’s experience of going on with life while always remembering their baby. Children who have experienced a death in their family are very reassured by stories of other children who have had a similar experience. It helps them to understand better what has happened in their own family while at the same time offering the comforting knowledge that they are not alone in their feelings.

Severe Brain Injury

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.

Emergency or Crisis?

Call: 307-363-2337 or
Email :  AFE Crisis