Support for Grieving Families

We offer our most sincere and heartfelt condolences on the loss of your loved one to an amniotic fluid embolism. What should have been a joyful moment in your family’s life has suddenly turned into one of tragedy and loss.

Our organization recognizes every mother and baby lost to an AFE and would be honored if you shared your loved one’s life and legacy with us. They are the inspiration for our work to end AFE.

Below you will find information and resources to assist you in the weeks, months and years to come. May we be a light that helps illuminate your path forward.

Immediate Considerations

Autopsy Information

This is such a difficult and very personal decision to make. Below we hope to answer some of the most common questions and guide you as you decide what aligns with your needs and personal beliefs.

Why should an autopsy be done in cases of Amniotic Fluid Embolism? 
Amniotic fluid embolism  (AFE) is a diagnosis of exclusion. This means all other possible causes have been excluded and a diagnosis of AFE is made based on the clinical symptoms the patient experienced. An autopsy can help further exclude any other possible causes for your loved one’s death. Oftentimes in cases of amniotic fluid embolism, an autopsy may show the presence of amniotic fluid or cells from the baby in the veins and tissues of women who suffer an AFE. The presence of these cells alone cannot confirm an AFE, as they are commonly found in laboring women who do not show any symptoms of an AFE.

What is an autopsy?
An autopsy is a surgical procedure used to help determine the medical reason explaining why a person has passed.

Who performs the autopsy?
An autopsy is performed by a trained medical examiner, coroner, or pathologist.

What happens during an autopsy?
It is important to know that care and consideration for the patient are always a top priority. Organs and tissues are carefully removed from the body for further examination and then returned to the body. The body is then cleaned and prepared for final transport to the funeral home or crematorium.

Religious Considerations
Many major religions support autopsies being an individual family decision. Consider consulting with your religious leader for guidance and be sure to share your beliefs with the staff helping coordinate the autopsy.

How long will it take to get the results?
Typically, you receive a verbal acknowledgement of the cause of death. A provisional report can be provided, but typically a final report may take up to 3 months.

Reading the Autopsy Report
Reading an autopsy report is expected to be a very emotional and difficult experience. It will be noticeably absent any emotion and entirely clinical. While your first reaction upon receiving the report will be to read it immediately, we recommend you read it with a loved one at time when you can sit quietly without interruption. We also recommend you do not read it late into the evening or when you have anything else scheduled in your day. We offer families support and guidance when reading through the autopsy. Please contact us and we can set up a time to connect.

Appoint A Primary Communicator

Spouses and family members can spend precious hours providing updates to other family, friends, neighbors and coworkers. Instead, designate one person to be the director of all communications and determine the most effective and efficient way to communicate with others.

We recommend using a website to communicate what happened to your loved one and highlighting the family’s needs. There are specific companies that have designed FREE and EASY to use website templates specifically for those facing a medical crisis and loss. Many families have chosen to use social media as it us a quick and effective way to communicate with many. We recommend being mindful of privacy for the infant as this is also their birth story.

Helpful items to include on a website are daily updates (if baby survived), photos, as well as listing specific ways people can help such as prayer requests or spiritual assistance, meals, flowers, monetary donations, etc.

Listed below are organizations that offer websites and personal blogs:
Caring Bridge (http://www.caringbridge.org/about)
Care Pages (http://www.carepages.com)
Lotsa Helping Hands (http://www.lotsahelpinghands.com)

Funeral Basics and Checklist

Funeral Basics is an excellent website that offers a comprehensive list of resources for planning a funeral service. We recommend starting with their Funeral Checklist

Allowing Others to Help

Allow people to help. One of the most common responses we hear is that sometimes you don’t know what help you actually need or anticipate needing. Many of the items on this list can be done or started by someone else. Ask a close family member or friend to help manage the tasks below or identify someone that may be best suited for each item. You will find many people will want to help, even strangers. Be sure to keep contact information of those offering to help; you may not have an immediate need but may discover one at a later time.

Food / Meal Trains

Many people will often volunteer to deliver a meal as a way to offer support. Ask a family member or friend to coordinate the process and spread the word to others who may want to participate. Include friends, co-workers, neighbors and church members.

We recommend setting a specific time for meals to be delivered and placing a cooler by the front door for meals to be placed in. This is a very overwhelming time and it may be too difficult to speak with each person delivering meals. 

For those who are assisting with establishing a meal plan, here are some steps to get you started.

  1. Determine the portions needed or have the meals planned to come every other day. Fridges often fill up very quickly and become hard to manage. 
  2. Help the family with weekly fridge cleaning and purging.
  3. Make note of any food allergies, preferences or limitations.
  4. Keep a log of people who provide meals and their contact information so the family you can offer words of appreciation at a later time.
  5. Request gift cards request for local restaurants, Door Dash, Uber Eats, Grub Hub and Postmates for those who are not in the area.
  6. Set up a website that help coordinate meal deliveries with ease. Families have used Meal Train, Give in Kind, Care Calendar , and Lotsa Helping Hands. 

Setting Up a Go Fund Me

The loss of a mother during childbirth is unexpected and never planned for. Most young families also do not carry funeral expense insurance or own burial plots. Depending on where you live and if you elect for burial or cremation, the average cost of a funeral is around $5,000-12,000.

Families and friends may offer to start a fundraiser or crowd-funding website to help with funeral and burial expenses.

Go Fund Me offers quick and simple websites to help get your fundraiser started. Simply tell your story with a photo, set a goal, and share it with friends and family. You will need an active bank account to get your Go Fund Me account set up. Funds raised are available in just a few days and will be directly deposited into the bank account you link to the fundraiser. There are minor fees that are taken out of each contribution, however the ease of set-up and the ability to quickly share on social media platforms makes it a very appealing solution. 

Keeping a Daily Journal

Write things down. Your memory will likely be unreliable for some time. Keep a detailed journal of your daily activities and thoughts. This can be immensely therapeutic. You may even consider writing a letter to your loved one. 

Create a spreadsheet to help you list the tasks you need to accomplish. Put these items in order of priority and set a reasonable goal to accomplish them. It can be hard to grieve when the financial and logistical burdens require so much attention and time. Establishing such a foundation will help you stay focused and give you a sense of accomplishment as you successfully complete each task.

FINANCIAL CONSIDERATIONS

Social Security Death Benefit and Survivor Benefits

If your loved one worked in the United States, they may have qualified for survivor benefits which includes a one time death benefit of $255 as well as monthly benefits to help care for surviving children 16 or under. These benefits may be available to their spouse, family member, or in some circumstances, a divorced spouse. Social Security will should be notified of the death as soon as possible. Your funeral home may handle the notification or you may contact them directly. If you are one of the covered family members, you’ll want to apply for benefits. You can visit your local Social Security office or contact them at 1-800-772-1213. Below are the items you will need to have in your possession when applying. 

  • Proof of the worker’s death;
  • Birth certificate or other proof of birth;
  • Proof of U.S. citizenship or lawful alien status if you were not born in the United States [More Info]
  • U.S. military discharge paper(s) if you had military service before 1968;
  • For disability benefits, the two forms (SSA-3368 and SSA-827) that describe your medical condition and authorize disclosure of information to us;
  • W-2 forms(s) and/or self-employment tax returns for last year;
  • Final divorce decree, if applying as a surviving divorced spouse; and
  • Marriage certificate

 

Family Medical Leave Act

The Family Medical Leave Act (FMLA) is a Federal Act that allows eligible employees to take an unpaid, job-protected 12 weeks off to help care for a newborn child or a family member with a serious health condition, or if you are suffering from a health condition (mental health and PTSD qualify) without being. Eligibility is determined by the company you work for and how long you have been employed. Learn more and see if you qualify here.

Bank Accounts

For spouses/partners with joint accounts:

Visit your local bank branch office and ask to speak with the Branch Manager or Operations Manager. It is best not to work with a teller or new account representative. Establishing a relationship with a long-term employee who has the power to make decisions is important.

Inform the Branch Manager or Operations Manager of your loss and explain you’d like to cancel the debit card but not remove your spouse’s name from the account. DO NOT CLOSE A JOINT BANK ACCOUNT. Ask them to place a note on the account of the death. You may receive checks in their name for some time so it is important to keep their name on the account. Be sure to add a payable on death (POD) beneficiary, such as your children or trusted family member. If you have a living trust consider opening a new savings account and leave any excess money that is not needed for monthly bills in this account. The reason for this is if you change your existing checking account to the name of the trust and get a check in your wife’s name, you may not be able to deposit that check. Having excess funds in a trust account will allow the trust administrator or executor to access the funds and avoid probate should something happen to you.

If a memorial account is established, consider setting it up at the same bank and branch. If friends or family are doing this for you, please ask them to work with your bank contact. This will help the Branch Manager become more familiar with your situation and will likely be more apt to make considerations regarding bank transactions such as holds, fees, etc.

If your spouse/partner handled the finances, consider hiring a local bookkeeper to help you sort through bills and online banking. Seek referrals for these types of individuals from a trusted advisor, such as an attorney, CPA, banker, or friends and family.

For family members of a mother who was uncoupled/single with no will:

As soon as you notify the bank of your loved ones passing they will freeze the account. You cannot access your loved ones funds unless you are listed as a beneficiary and can provide them with the death certificate and proper identification.

If your loved was was single and did not have a will and did not have a beneficiary on their bank accounts, the account will be frozen and sent to the state in which they lived. The assets and property are then passed by intestate succession to their heirs. (children or blood relatives). This process is different and depends on the state where your loved one lived. Usually the court will appoint an administrator who divides up the assets.

Finding bank accounts

If you are unsure where your loved one had bank accounts you can pull a credit report which may identify open cards or credit lines such as overdraft protection. You can also search their phone for apps for online banking, check their mail for statements, or email accounts for the words “bank or credit union”.

Typically, if the accounts are not accessed for a period of 2-3 years the funds will be sent to the state in which they resided. Check out Unclaimed.org or MissingMoney.com to search for any unclaimed property and be sure to check that regularly for several years.

Life and Accidental Death Insurance

If your loved one had a life or accidental death insurance policy, contact your agent or company immediately. Check with their employer (Human Resources or direct boss) to inquire if there is a company-sponsored life or accidental death life insurance policy in place for her. Confirm who the designated beneficiaries are. Typically, insurance policies will require a cause of death for the death certificate. See our section on death certificates for more information about cause of death. When closing credit cards, be sure to ask if there was any life insurance connected to the account

Cell Phone

If you are unable to unlock the screen lock consider changing the password to one you use or writing down the password in a place you can access often. Consider having someone connect with the entire contact list to notify everyone of a memorial service.

We recommend preserving their voicemail message in another form, as it may be deleted accidentally if the phone malfunctions or the service contract ends. Be sure to back up the phone to iCloud or to your computer to keep all photos, text, and voice messages. Check with the phone carrier to see about the best way to do this. Consider reducing the minute plan and keep the phone service on to notify any future callers of your loss. Below are the direct links to the major cell phone carriers in the U.S. on what your options are and what documentation will be needed.

Verizon
T-Mobile 
Sprint
AT&T

 

Credit Cards and Loans

Make a complete list and photocopy each of your spouse/partners credit cards, business expense accounts, and any other open account they may have. Each of these institutions will need to be notified. Many will require a copy of the death certificate to validate your request to close the account. Ask each company whether there is any applicable insurance that pays off the account in the event of a cardholder’s death. Consider running a credit inquiry to identify any other open accounts. You can do this by contacting the major credit reporting agencies: Equifax, Experian, or Transunion.

Auto Loans, Leases, Insurance, Title, Registration, and Driver's Licenses

If there is an existing auto loan or lease on your loved one’s car you’ll want to contact the lender to notify them as soon as possible.

Loans
Auto loans are based on the value of the car and are guaranteed by the signers of the loan. If you co-signed for the loan, you are responsible to still make payments. Do your best to make all payments until you can sell the car and pay off the loan. If your loved one did not have co-signer on the loan, the estate is responsible for ensuring the loan is paid back. You can work with the lender to inquire about returning the car however, there are usually fees and often times the value will not cover the total cost of the loan. If there was no co-signer and no will, you will need to go through probate to gain the rights to sell the vehicle. This process varies by state.

Lease
Similar to car loans, if you co-signed for the lease, you are responsible to still make payments. There may be a provision in the lease agreement that allows for an early termination, lease transfer or swap. If this is not an option, you can work with the lease company to have them repossess the car and the estate will be responsible for paying any remaining balance.

Insurance
Contact the insurance company to inform them of your loss. You can inquire about coverage for non-use to keep it insured until you are able to sell it or you can remove your loved one from the policy. If you plan to keep the car, you’ll need to work with your state department of motor vehicles to get the title and registration transferred.

Title,  Registration, and License
Each state’s department of motor vehicles will have their own process for title transfers which may include special provision such as transfer on death (TOD) or Joint With Rights of Survivorship (JWROS). You will also want to formerly surrender your loved one drivers license.

Retirement Accounts

Obtain the current information regarding any applicable 401(k) accounts if you have joint investment accounts or investment accounts held in your spouse’s name. There are many options and tax considerations to make. Be sure to speak with a licensed financial advisor preferably one that is a CFP before making any changes. If you do not currently have one, ask for a referral from your estate attorney or a trusted advisor. For the most current information about 401(k) and IRA rules and regulations, please visit the government website below.

 HYPERLINK http://www.irs.gov/retirement/sponsor/article/0,,id=151926,00.html

Utilities, Subscriptions and Memberships

Be sure to contact the utility companies and any other subscriptions or memberships you may have to transfer service to your name or removed your loved one’s name. These may include 

Gas and Electric
Trash 
Water
Sewer Television or streaming services 
Internet provider
Music services
Gym membership or Fitness based apps 
Newspaper, magazine or audio service subscriptions
Library cards
Food or Gift box subscriptions

Health Insurance

If your spouse or partner’s employer provides your insurance, there may be a grace period when you will still have coverage. You’ll need to work with Human Resources or with the insurance company directly to inquire about how long coverage will last and what options are available You will also want to add your newborn child to the policy. Depending on your spouse’s employer you may also be able to continue coverage through COBRA.

Payment Apps

Review your loved one’s phone for any cash or payment exchange apps and contact them to close their accounts. 

Venmo 1- 855-812-4430
Paypal 1-888-221-1161
Zelle 1-844-428-8542
Apple Pay
Samsung Pay

Memorializing Your Loved One

Memorial Websites

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.

KudoBoard

Collaborate to create a unique, online memorial. Add memories, photos, or videos; invite others to contribute; visit online anytime and print it out as a book of remembrance. Receive $25 off with promo code AFE2021.

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.

Memorial Ideas

As you continue to process your grief you may find that you would like to do something to memorialize your loved one. There are a number of creative ways to honor and remember them. Here are just a few ideas. 

  • Check with the funeral home to obtain a copy of their fingerprints and order custom jewelry
  • Create a memory box with photos and keepsakes
  • Order custom jewelry or keepsakes with their cremains
  • Commission or order memorial artwork or sketches
  • Donate to causes in their honor
  • Dedicate a park bench or plant a tree
  • Design and obtain a tattoo
  • Create a memory garden 
  • Pen a journal to your loved one
  • Spend time in a place you frequented with them

AFE Foundation Personalized Memorial Candle

We want to honor your loved one with a special personalized AFE Memorial candle. Order here and use coupon code AFElight at checkout.
One candle per family please. Additional candles can be purchased on the same website.

Grief and Coping

Stages of Grief

Stages of Grief

Denial

Following a devastating loss, denial and shock is a normal response as we wonder how life as we knew it will continue. Denial can help by pacing our feelings of grief and allow us to cope and process our feelings in a more manageable way. 

Anger
A necessary and often misunderstood part of grieving is anger, which can help us reconnect to the reality of our circumstances. Allowing yourself to feel and release anger will help relieve tension and aid the healing process.

Bargaining
The belief that we can exchange one set of circumstances for another or wish to undo an event that has occurred. Bargaining forces us to acknowledge that the event occured as we try to negotiate our circumstances.

Depression
Depression is a normal, natural response to loss and may intensify as you begin to accept the reality of your loss. Please seek assistance from mental health professionals  or social supports when you feel overwhelmed by the intense emotions and physical response following a devastating loss.

Acceptance
During this stage you may begin to understand the permanence of your loss. Accepting your loss can be painful and is not the same as being alright, ‘moving on’, or forgetting your loss. You may continue to experience sadness and longing as you accept this new normal and work towards having more good days than bad days.

Finding Meaning
The stage of grief where you can work towards finding meaning in the love you continue to feel for a person after their death. Finding your individual way to sustain the love you feel following death can help you move forward in your own life. 

The Process of Grief:

  • The experience of grief varies from one individual to another.
  • The stages of grief are not linear and you may not experience every stage. 
  • It is common to move back and forth between different stages over time.
  • There is no time limit on the grieving process, however lingering symptoms of grief can turn into complicated grief. Complicated grief feels more intense and can hinder the healing process. 
    • Risk Factors for Complicated Grief
      • Loss of a child, spouse, partner, or anyone with whom the person had a very strong and fulfilling relationship
      • Negative circumstances surrounding the death 
      • Financial hardship related to the loss
      • History of mood, anxiety disorder or PTSD
      • History of trauma or loss
      • History of Substance Abuse Disorder or Alcoholism
      • Deployed or combat veteran

PTSD

Spouses, family members, and health care providers that are present during the delivery may develop post-traumatic stress disorder or PTSD. PTSD is a serious condition that can occur after a person has experienced or witnessed a traumatic or scary event where there was serious physical harm or threat of physical harm or death. A diagnosis is made by a mental health professional and requires treatment.

The PTSD Risk Assessment can help you understand if you might be experiencing symptoms of PTSD. This is not a diagnostic tool, but may be helpful in assessing your symptoms. If you believe you are suffering from symptoms of PTSD, it’s important to seek professional support.

Connecting with Other AFE Grieving Families

 

AFE Foundation Grieving Family Support Group  
This group is for any family members who have lost a loved one to an AFE. This group provides a forum for sharing in grief, seeking comfort, and asking questions of others in similar circumstances. Our hope is that this group will prove helpful in the days, weeks, months and years following the AFE. The group is a closed group to ensure the members posts are only available for others members to see. This group was established by and is moderated by the AFE Foundation.

AFE Foundation Grieving Fathers Support Group 
A group for fathers who have lost a spouse or partner to AFE, this group provides a forum for sharing in grief, seeking comfort, and asking questions of others in similar circumstances. Our hope is that this group will prove helpful in the days, weeks, months and years following the AFE. The group is a closed group to ensure the members posts are only available for others members to see. This group was established and is moderated by the AFE Foundation.

 

Grief Support Groups

Children's Books on Grief and Loss of a Parent

  • 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.
  • Why Do I Feel So Sad is an inclusive, age-appropriate, illustrated kid’s book designed to help young children understand their own grief.
  • 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.
  • The Good Mourning Book was written by a young boy who lost his mother that helps children process, from a peer’s perspective, the broad range of emotions, thoughts, and pain experienced after the loss of a loved one.
  • The Memory Box will help children and adults talk about this very difficult topic together. The unique point of view allows the reader to imagine the loss of any they have loved – a friend, family member, or even a pet. A parent guide in the back includes information on helping children manage the complex and difficult emotions they feel when they lose someone they love, as well as suggestions on how to create their own memory box.
  • Goodnight Star Whoever You Are helps kids cope with grief, loss, and longing in an enchanting way, sparking meaningful conversations about the everlasting power of love. With an imaginative point of view, kids will discover that the connection they share with the person or pet who died transcends the space between them.
  • When Mama Goes To Heaven seeks to provide a healing narrative about loss that helps them tap into that capacity.

Self Care

It is important to take at least 30 minutes to an hour each day to have to yourself. This is vital for you to replenish your mind, body and spirit. Tell family and friends you need this time. Some common tips that have been helpful to others have included going to the gym, coffee shop, place of worship, park or library. If you have a hobby, be sure to continue to do that. Depending on the time of year, getting outside can be very beneficial. Be mindful that some of the loneliest and isolating hours are once the baby and children are in bed. This will be a good time to connect with friends or seek the comfort from the support groups. 

AFE Research Opportunity!

You are likely shocked and being forced to make very difficult decisions right away. While we never want to add to your already full plate, we do want to let you now there is an important and time-sensitive opportunity to have your loved ones participate in an important research study.

If your loved one was hospitalized for her birth and her AFE occurred within the last 3 days, there are critical blood specimens that will be otherwise discarded that could instead be sent to us for our study. We would not ask for any additional specimens to be taken from your loved one.

We believe blood and tissue specimens from women who suffer an AFE hold critical clues that can help researchers advance their knowledge of the condition and develop a means for prevention and treatment so that no future mothers and babies will die. To learn more or to begin the process of enrolling your loved one contact us at 1-619-820-3383.

Help us #endAFE!

The AFE Foundation is entirely funded by donations. Every dollar goes directly toward our support, research, and education programs. We are committed to turning donations into action, including yours.