Grieving Families

Complete and utter shock is the only way to describe those first moments you learn of the loss of your loved one to an amniotic fluid embolism (AFE). While all unexpected loss can be shocking, the death of a loved one while bringing new life into the world is beyond comprehension. What should have been the happiest days of their lives suddenly turned into one of tragedy and immense sadness. The range of emotions is wide and varied, most especially when coupled with the joy of a new baby. Feelings of intense worry may also occur if the child has suffered any complications as a result of their traumatic birth. Many family members who have experienced this heartbreak describe immediate feelings of confusion, disbelief, anger and even guilt.

Sadly, the physicians and nurses are equally stunned and are often not prepared on how to communicate with the family. Families also report that the news is so shocking they are unable to remember or understand what the doctors have told them. Further complicating the situation is that there are very few answers about how and why AFE occurs. Almost immediately notified of the news, people begin to search the web for any information.

The AFE Foundation recognized the need and importance for providing current and accurate information about the condition. It also acknowledged the need to offer support to those affected by AFE. Listed below are some helpful resources and support opportunities to assist you in the weeks, months and years to come.

Family Members

Listed below are additional helpful opportunities for support and guidance.

The AFE Foundation Grieving Family Support Group on Facebook is for family members (and close friends with the families permission) who have lost a loved one to AFE. This group will provide a forum for you to share in your grief and ask questions only those who have walked in your shoes can answer.  Our greatest desire is that this group will prove helpful in the days, weeks, months and years to come.

The group is a private group which means content is only accessible by members. It is moderated by the AFE Foundation. To ensure privacy and protection of our members we ask those interested in joining to do the following:

1. Send an email to our group admin (Amy@afesupport.org) and share your connection to an AFE loss. Please allow up to one week for a response.

2. Visit the AFE Foundation Grieving Family Support Group and request to join. Once your request is approved you will be added to the group.

Here are what some family members have to say about joining this group.

“I found this group very supporting and continues to help me come to term with my mom’s death from an AFE on 5-12-00. It has helped me understand more about the condition and how to comprehend this incredible loss. I miss my mom everyday. It’s the little things I miss most, like her laugh or the sound of her voice. Even more devastating is the fact that my half brother will never get to know our mom.”      -Carolyn D., lost her mom to AFE in 2000

“I have never felt as isolated as I did when my sister died during labor. To have my sister die suddenly during what should have been the happiest day of her life was debilitating. I could not believe that life could go on. I was desperate to talk to others who had experienced such grief so that I could be assured that life could go on. The people that I have connected with through the AFE Foundation have helped me understand that I will make it through this. I have also received great advice on how to celebrate my niece’s first birthday, how to hold myself up during a friend’s baby shower, and how to deal with my brother-in-law dating. This group has helped me tremendously.”      -Anonymous

Legacy.com

Legacy.com is a for-profit company that helps create a memorial website. Memorial websites can help you celebrate and honor your loved one’s legacy and inspire family and friends to do the same. Visitors can share messages of support and remembrance while connecting with each other. Through shared personal tales and reflections, this lasting online memorial continues the life story of your loved one. The site also offers support and resources on how to deal with grief and what to do and say in the event of a loss.

Forever Missed

This site helps create memorial websites to honor the loss of a loved one. Their easy to use templates allow those with modest computer skills the opportunity to create a beautiful site. A basic memorial website at ForeverMissed.com is free to create and lasts forever. You can also sign up for the unlimited plan or upgrade your free memorial at any time to enjoy unlimited space for photos, songs and video clips, along with access to other great new features.

Remebered.com

This site offers a free online memorial website in memory of your loved ones. Enshrine your photos, memories, and tributes with friends and family. Memorials are free to create and use for 30 days and can be commemorated forever for $9.95. There is never a fee for memorial visitors.

Memorial Facebook Page

If your loved one has an existing page, be sure to report this information to Facebook. Type “Memorialize an Account” under the help menu for instructions. When an account is memorialized, only confirmed friends can see the profile or locate it in the search function. The profile will also no longer appear in the suggestions section of the home page. Friends and family can leave posts in remembrance. In order to protect the privacy of the deceased user, we cannot provide login information for the account to anyone. However, once an account has been memorialized, it is completely secure and cannot be accessed or altered by anyone.

Remembering and honoring your loved one’s memory is an important part of the healing process. There are many ways you can honor them through the AFE Foundation.

  • Consider sharing a story about your loved one to be featured on our website.
  • Submit their case to our AFE Patient Registry at Baylor College of Medicine. Learn more Submit a Case
  • Make a tribute or memorial donation in their name. Donate now.
  • Organize a fundraising event in their honor doing something they enjoyed. Visit our Events page to see examples of what others have put together or for more ideas visit here. Please contact us if you are organizing this type of event, we’d like to be help support you and your efforts.

The Compassionate Friends

This 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.

Bereaved Parents of the USA

This national organization has 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

This international organization has 25 affiliated groups. Founded in 1995 it 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 of such groups by listings them on their website.

AGAST International

Founded in 1989 this organization is dedicated to supporting grandparents when a grandchild dies by offering personal support, literature, and has an online message board. They also offer telephone support.

  • The Wonderful Gift is a children’s book written by Quinea Postel, who lost her sister to amniotic fluid embolism (AFE). This book introduces a character named Penelope, an angel who walked among us, whose life’s purpose was to deliver “the gift” of a child. It is for children of all ages and can help foster a conversation about the loss of a mother and the birth of a child.
  • The Invisible String is specifically written to address children’s fear of being apart from the ones they love. The Invisible String delivers a particularly compelling message in today’s uncertain times that though we may be separated from the ones we care for, whether through anger, or distance or even death, love is the unending connection that binds us all, and, by extension, ultimately binds every person on the planet to everyone else.
  • Help Me Say Goodbye: Activities for Helping Kids Cope When a Special Person Dies is an art therapy and activity book for children coping with death. Sensitive exercises address all the questions children may have during this emotional and troubling crisis. Children are encouraged to express in pictures what they are often incapable of expressing in words
  • Samantha Jane’s Missing Smile: Coping with the Loss of a Parent by Julie Kaplow, Donna Pincus, and Beth Spiege
  • Tear Soup by Pat Schwiebert
  • The Saddest Time by Norma Simon

Spouses/Widowers

The loss of a spouse can be a traumatic, confusing and lonely time. The loss of a mother during the birth of a child is one of unexplainable grief and will bring a range of emotions that are complex and challenging to manage. What was supposed to be a time of great joy has now become one of the hardest times of your life. It is often hard to know what to do in the wake of such an immense tragedy.

Below is some helpful and timely information for those who have recently lost their spouse or partner to AFE. The following information was compiled from individuals who have also experienced the loss of a spouse from AFE. This is what they found most helpful in the days, weeks and months following their loss. It is not intended as legal advice and it is always recommended you seek professional guidance.

Helpful Steps to Follow After the Loss of a Spouse to AFE

The Helpful Steps to Follow After the Loss of Spouse to AFE Guide will address time sensitive information and offer assistance for the many decisions fathers will face in the wake of losing a spouse or partner. This guide includes links to apply for social security benefits, information on how to manage medical bills, bank accounts, and much more.

Listed below are additional helpful opportunities for support and guidance.

The AFE Foundation Support Group for Grieving Fathers is a private Facebook group for fathers who have lost a spouse or partner to AFE. This group will provide a forum for you to share in your grief and ask questions only those who have walked in your shoes can answer. Our greatest desire is that this group will prove helpful in the days, weeks, months and years to come. It is only open to men who are grieving the loss of a spouse or partner to AFE. This group was established and will be moderated by the AFE Foundation. To join, please send an email request to info@afesupport.org.

Here is what some fathers are saying about this group and the AFE Foundation.

“Being able to find support from someone who had been through these extraordinary circumstances at a time when nothing made sense and my world had been turned upside down was tremendously powerful. To have someone say ‘Things don’t get easier, but you CAN cope’ was the sort of realism and honesty I needed at a time when nobody else knew what to say. Seeing the way he had coped with the adversity gave me hope and strength that although things would never be the same, I could endure the hard days, and honor my wife’s memory in the best way possible, by being a good father to our daughter.”

-Mark

“The AFE Foundation and their support groups have allowed me an outlet to honor my wife and connect with others who are equally as passionate about raising awareness and finding the answers to why this happened.”

-Dave

AFE Foundation Grieving Family Support Group is for family members who have lost a loved one to AFE. This group will provide a forum for you to share in your grief and ask questions only those who have walked in your shoes can answer. Our greatest desire is that this group will prove helpful in the days, weeks, months and years to come. 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 Liz Logelin Foundation was established to assist widows and widowers with young families who find themselves in the heartbreaking, catastrophic situation of having lost a spouse, life-partner, and parent. The Foundation’s goal is to financially assist these families as they deal with the loss of their loved ones, and struggle to move forward. The Foundation was established in 2009 by Matthew Logelin. Matt lost his wife Liz in 2008, shortly following the birth of their daughter, Maddy.
  • YoungWidow.org is a non-profit organization exclusively dedicated to young widows and widowers and provides online support groups connecting you to others raising small children without your spouse.
  • SupportGroups.com is an online support group community with a goal is bring people together around life’s challenges by providing concise, up-to-date information and a meeting place for individuals, their friends and families, and professionals who offer pathways to help
  • The Soaring Spirits Loss Foundation (SSLF) was established in May of 2008 to provide a unique peer-based support community for grieving people, with a special emphasis on those who are widowed. Up to now, this segment of the bereaved community has been underserved and often overlooked. SSLF aims to change that by leveraging a social-media-based infrastructure with key programs designed to inspire, inform, comfort, connect, and provide practical help for the bereaved.
  • Legacy.com is a for-profit company that helps create a memorial website. Memorial websites can help you celebrate and honor your loved one’s legacy and inspire family and friends to do the same. Visitors can share messages of support and remembrance while connecting with each other. Through shared personal tales and reflections, this lasting online memorial continues the life story of your loved one. The site also offers support and resources on how to deal with grief and what to do and say in the event of a loss.

The loss of a spouse can be a traumatic, confusing and lonely time. The loss of a mother during the birth of a child is one of unexplainable grief and will bring a range of emotions that are complex and challenging to manage. What was supposed to be a time of great joy has now become one of the hardest times of your life. It is often hard to know what to do in the wake of such an immense tragedy.

Below is some helpful and timely information for those who have recently lost their spouse or partner to AFE. The following information was compiled from individuals who have also experienced the loss of a spouse from AFE. This is what they found most helpful in the days, weeks and months following their loss. It is not intended as legal advice and it is always recommended you seek professional guidance.

Helpful Steps to Follow After the Loss of a Spouse to AFE

The Helpful Steps to Follow After the Loss of Spouse to AFE Guide will address time sensitive information and offer assistance for the many decisions fathers will face in the wake of losing a spouse or partner. This guide includes links to apply for social security benefits, information on how to manage medical bills, bank accounts, and much more.

  • The Wonderful Gift is a children’s book written by Quinea Postel, who lost her sister to amniotic fluid embolism (AFE). This book introduces a character named Penelope, an angel who walked among us, whose life’s purpose was to deliver “the gift” of a child. It is for children of all ages and can help foster a conversation about the loss of a mother and the birth of a child.
  • The Invisible String is specifically written to address children’s fear of being apart from the ones they love. The Invisible String delivers a particularly compelling message in today’s uncertain times that though we may be separated from the ones we care for, whether through anger, or distance or even death, love is the unending connection that binds us all, and, by extension, ultimately binds every person on the planet to everyone else.
  • Help Me Say Goodbye: Activities for Helping Kids Cope When a Special Person Dies is an art therapy and activity book for children coping with death. Sensitive exercises address all the questions children may have during this emotional and troubling crisis. Children are encouraged to express in pictures what they are often incapable of expressing in words.
  • Camp Erin through The Moyer Foundation, is a public, 501 (c) 3 non-profit organization with offices in Seattle, WA and Philadelphia, PA, was founded in 2000 by MLB, World Series-winning All-Star pitcher Jamie Moyer and his wife, Karen. The Moyer Foundation created and funds Camp Erin, the largest network of free bereavement camps in the country for children and teens who are grieving a significant loss of loved one.
  • Comfort Zone Camp is for children who have experienced the loss of a family member often become miniature adults before their time. Comfort Zone provides a safe environment where kids can have fun, be around
    people who “get it” and get back to being kids again.
  • Camp Courage (Bereavement Camp) facilitates Pre-Camp and Post-Camp Grief Support Groups for the grieving process of children and teens and their families who have suffered the death of a significant person while providing a safe and healing experience.
  • The Wonderful Gift is a children’s book written by Quinea Postel, who lost her sister to amniotic fluid embolism (AFE). This book introduces a character named Penelope, an angel who walked among us, whose life’s purpose was to deliver “the gift” of a child. It is for children of all ages and can help foster a conversation about the loss of a mother and the birth of a child.
  • The Invisible String is specifically written to address children’s fear of being apart from the ones they love. The Invisible String delivers a particularly compelling message in today’s uncertain times that though we may be separated from the ones we care for, whether through anger, or distance or even death, love is the unending connection that binds us all, and, by extension, ultimately binds every person on the planet to everyone else.
  • Help Me Say Goodbye: Activities for Helping Kids Cope When a Special Person Dies is an art therapy and activity book for children coping with death. Sensitive exercises address all the questions children may have during this emotional and troubling crisis. Children are encouraged to express in pictures what they are often incapable of expressing in words
  • Samantha Jane’s Missing Smile: Coping with the Loss of a Parent by Julie Kaplow, Donna Pincus, and Beth Spiege
  • Tear Soup by Pat Schwiebert
  • The Saddest Time by Norma Simon

Didn’t find the support you were seeking? If you have additional needs for support or have something you think we should include, please contact us.

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.

Emergency or Crisis?

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