Guide for Grieving Families

Families Grieving the Loss of a Loved One

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). The death of a loved one while bringing new life into the world is beyond comprehension. What should be a day filled with happiness is suddenly filled with tragedy. 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.

Often times the physicians, nurses, and care providers are ill-equipped on how to communicate such an unexpected loss. 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.

Listed below are some helpful resources and support opportunities to assist you in the weeks, months and years to come.

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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. It has helped me understand more about the condition and how to comprehend this incredible loss.” -Carolyn

“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

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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.

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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 here.
  • 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.

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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.

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  • 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

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