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Faculty: Dr. Wendy Froberg

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Too Soon Gone:

Grief in Cases of Pre- and Perinatal Death

The Unique Aspects of Grief in Pre- and Perinatal Death

A baby represents our hope for the future. We are especially affected when children die, perhaps because of our innate tendency to protect the vulnerable

It is not the “natural order” for babies to die. Often we comfort ourselves when someone has lived a long life and it was “their time” to die 

There is no name for someone who has lost a child This can make bereaved parents feel alone, isolated and not “counted” 

The Unique Aspects of Grief in Pre- and Perinatal Death (Cont’d)

A prenatal death is an invisible or silent loss. Other people never saw baby, so it may not feel like a “real” person to them. To parents, the baby was not abstract; it lived  

Pre-/perinatal loss is a very common experience, but it is still traumatic. Once you start talking about it, people come forth with their stories. It is a real loss that needs to be grieved

Common Grief ReactionsSadness

Anger

Irritability

Crying

Difficulty sleeping

Dreams/nightmares

Disbelief

Common Grief Reactions (Cont’d)

Guilt

Not wanting to be alone

Not wanting to see anyone/isolation

Wanting to talk

Confusion

These feelings can be very intense, although they will reduce with time. Each person’s experience is unique. Both mothers and fathers experience varying levels of emotional upheaval and should never be judged for the depth of their emotional reaction

Grieving parents have the right to recover in their own way. There is no timetable or statute of limitations on grieving an unborn baby. The last thing we want to do is make parents feel more guilty because they are not grieving “right”

Pregnancy loss places a woman at risk for depression and anxiety in the future and may negatively affect mother-child attachment

It can be difficult to differentiate between grief and depression but typically, if the symptoms are severe and impinge upon one's ability to function for a prolonged period of time, professional help should be sought

Signs of Depression

Having little interest in your usual activities or hobbies

Feeling tired all the time

Gaining or losing weight

Having trouble sleeping or sleeping too much

Having trouble concentrating or making decisions

Thinking about suicide or death

General Suggestions for the Bereaved Parent

Talk about your baby and your feelings about your loss with your partner, family and friends, your health care provider, a grief counselor with special training, a support group with other parents, and/or your religious or spiritual leader

Consider having a memorial. Your hospital may have a service each year that you can go to

Cry if you want to, privately or publicly

Read books and poems or listen to music that you find comforting

General Suggestions for the Bereaved Parent (Cont’d)

Write your thoughts and feelings in a journal or write letters or poems to your baby

Make an album or memory box for keepsakes of your baby

Leave baby items where they are until you feel ready to put them away

Try not to make big changes in your life, like moving to a new place or taking a new job, right after your baby dies. Give yourself time to grieve

Unhelpful Grief Behaviours

Isolating Yourself/ Believing You’re All Alone

Blaming Yourself

Wondering If You’re "Normal”

Listening to Negativity

Ignoring Your Emotional Needs

Unhelpful Grief Behaviours(Cont’d)

Worrying What Others Think

Rushing Yourself

Keeping It a Secret

Ignoring Your Physical Needs

Avoiding Professional Help

Inappropriate Comments After a Pre-/Perinatal Loss

Family and friends love you and want to help, but they may be afraid of saying or doing the wrong thing and feel helpless because they're not sure how to comfort and support you. They may pull away rather than risk upsetting you, leaving you feeling abandoned or say inappropriate things:

”You’re young, you can try again. You’ll have another baby”

”It was God’s will”

”Something must have been wrong. It’s for the best; Nature just corrected her mistake”

Inappropriate Comments After a Pre-/Perinatal Loss (Cont’d)

”Why are you so upset? You never knew/at least you didn’t get to know the baby”

”It’s time to get over it and move on”

"At least you can get pregnant"

"At least you have other kids”

"Everything will be fine next time"

"It happened because _______"

How Others Can Help the Bereaved Parent

Acknowledge that the baby--and the loss--were real

Offer ongoing support

Let the parent talk about the baby and share photos, stories and memories

Offer to help with tasks

Be especially sensitive if you are pregnant

Dealing with Sibling (Children’s) Loss:

Talk about death using simple, honest words. Don't use words that may confuse or scare them

Encourage them to ask questions. Give as much age- appropriate information as your child needs

Be aware of changes in your children's behavior. Younger children may regress. Older children may worry about school, friends or show no reaction at all to the baby's death. They may ask questions that seem rude or uncaring. This is normal. Be as patient and loving as you can

Dealing with Sibling (Children’s) Loss (Cont’d):

Tell them they are not going to die

Tell them that no one is to blame for the baby's death

Read them stories that talk about death and loss

Ask them to find their own ways to remember the baby. They may want to go to the memorial service or funeral or draw a picture or make a keepsake for the baby. Include them in grieving rituals

Ask a counselor to meet with you and your children to help all of you understand your feelings

Tell your children's teachers and other caregivers what has happened so they can support your children, too

The Partner Relationship

Men and women often react differently to the loss of a pregnancy, which can complicate a relationship

Men do suffer the loss of a pregnancy and can experience many emotions. Their feelings may be overlooked because they seem to cope more easily

This can be a very difficult time for fathers since they may feel there is little they can do to help their wife, something men are socialized to do

Traditionally, a man has been expected to remain outwardly strong to support his partner. He may hide feelings of sadness and loss as he tries to take care of her

The Partner Relationship (Cont’d)Men tend to grieve more privately. They are less likely to cry, which doesn't necessarily mean they are not sad, although their wife may perceive it that way

Men’s grief may be funneled into projects or the examination of facts. Women feel connected to the pregnancy earlier and express their feelings more openly. They connect and receive emotional support by verbally sharing their stories

Both partners may feel their own emotions are "wrong" and feel bad about not having the same grief reaction as their spouse

Often both partners feel guilty. If they believe the other blames them, it can lead to more anger, sadness and withdrawal

Types of Prenatal/Perinatal Loss and Associated Issues

Miscarriage: first and second trimester: Usually the reason is not known, so decisions about trying again must be made in the absence of information. Because it is medically common, it was once assumed to have less impact than we now understand

Ectopic pregnancy: A ruptured ectopic pregnancy is a potentially life-threatening event for the mother and affects her ability to conceive in the future

Termination due to poor prenatal diagnosis (therapeutic abortion): Parents have to make the choice about the baby’s life: this may conflict with cultural and religious beliefs. Parents often fear being judged for their decision

Stillbirth: There is the distress of assuming everything would be fine up until the last minute and having to deliver a baby who has died

In Cases of Unexpected LossParents experience disbelief and shock, with no time to prepare

They may be on a labour and delivery unit surrounded by living babies and happy parents, leave the hospital with an empty car-seat and go home to baby preparations that remind them of their painful reality

They may be asked to make decisions when emotionally overwhelmed/ unable to process information; may make choices that they will regret in the future

Offer expert and compassionate guidance to these parents. Never force them to do something that makes them uncomfortable but rather give choices and the wisdom of your past experiences with other cases

When the Loss is Expected

Parent’s emotional and cognitive task is to absorb the reality that their baby has already died or will not survive. Grieving begins before the loss is finalized

Parents are faced with decisions that must be made, often in short order and without full information

Palliative principles can be utilized. The patient is not the baby but the parents, extended family and other loved ones

When the Loss is Expected (Cont’d)

Goals are to help the bereaved parents to accept their child’s death, to be as comfortable as possible while they go through the birth/death or termination process, to affirm death as a natural, albeit painful, process, to create meaningful memories and to spend brief, precious moments with their baby

A multidisciplinary team approach can be utilized, with medical, psychological, social and spiritual caregivers/practitioners each taking an important role in alleviating the family’s suffering. Volunteers such as other parents who have lost a baby can be very helpful as well

Remembering and Honouring Your Baby

Dealing directly with a baby’s death is painful; we may want to shy away from it and avoid talking about the loss because it makes people uncomfortable

Parents may feel that expected to forget what happened or hide the memories away. It may seem like they have nothing to show for the pregnancy

Grief work includes remembering

At the Time the Baby Enters the World

Hold Your Baby in Your Arms

Name Your Baby

Bathe Your Baby

Dress Your Baby

Footprints/Handprints and Certificates

Take Pictures

Visitation

Later On: Rituals of Remembering/Celebrating Life

Keep and collect mementos of your baby in a special box or scrapbook

Light a candle on special days and holidays

Say a prayer

Write a poem or letter

Paint a picture

Release balloons or butterflies

Plant a tree or a small garden

Later On: Rituals (Cont’d)Have a piece of jewelry made

Donate to a charity or give something to a needy child who is about the same age as your baby would be

Get involved in a special project dedicated to your baby or volunteer with a charity

Have a memorial service or funeral at your home or place of worship, with just a few people or with all your friends and family. It may include burying your baby or spreading his ashes in a special place

Have a special time to remember. Pick a date that is meaningful to you. Do something on your own, or bring family and friends together to remember your baby

Why a Funeral?It gives you the opportunity to make some decisions for your child when so many of those decisions were taken from you

Making personalized choices for your baby helps to honor your baby as a person

Since funeral planning is something we are used to after a death, it may help you come to terms with the sudden loss of your baby

It will give you something to do when your thoughts are likely to be unfocused

Programs in Calgary for Pre- and Perinatal Loss

The Alberta Health Services Pregnancy and Infant Loss Program, Foothills Medical Centre: In 2000, the first PAIL Coordinator was hired to provide assessment, development and implementation of services for families experiencing a perinatal loss and to provide grief counseling following discharge from hospital

The program now offers a standard of care for families, including memory building, reading materials and support groups, plus educational seminars for healthcare professionals

Scott Smed Family Birthing Rooms and Centre of Excellence : After Shannon and Peter Smed lost their unborn son in 2000, they were inspired to help other parents to have continuous support, comforting surroundings and a more positive experience as they went through their loss

Their yearly golf tournament has raised funds to build three family rooms at the Rockyview, Foothills and Peter Lougheed hospitals. Parents and family members using these rooms while their child enters the world experience privacy and understanding at a traumatic time, and receive a memory gift box filled with items to help their child's memory live on in their lives forever

Programs in Calgary for Pre- and Perinatal Loss (Cont’d)

Programs in Calgary for Pre- and Perinatal Loss (Cont’d)

Memory Boxes: These include a a teddy bear, a hand-knitted blanket and cap, a nightgown, a diaper, a certificate of life, a measuring tape, a ceramic baby-booties ornament with birthstone, a hospital bracelet, a folder for a lock of hair, a bassinet card, cards for footprints and handprints and a condolence card

Caring Beyond: A volunteer-run, peer-support group of bereaved parents existing since the early 1990‘s. Services include a telephone support line, monthly facilitated support meetings, presentations on relevant topics, a website with links to various resources, a lending library and a yearly candle-lighting ceremony of remembrance