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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 vulnerableIt 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 ReactionsSadnessAngerIrritabilityCryingDifficulty sleepingDreams/nightmaresDisbelief

Common Grief Reactions (Cont’d)

GuiltNot wanting to be aloneNot wanting to see anyone/isolationWanting to talkConfusion

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 attachmentIt 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 DepressionHaving little interest in your usual activities or hobbiesFeeling tired all the timeGaining or losing weightHaving trouble sleeping or sleeping too muchHaving trouble concentrating or making decisionsThinking 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 toCry if you want to, privately or publiclyRead 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 babyLeave baby items where they are until you feel ready to put them awayTry 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 AloneBlaming Yourself Wondering If You’re "Normal”Listening to Negativity Ignoring Your Emotional Needs

Unhelpful Grief Behaviours(Cont’d)

Worrying What Others ThinkRushing YourselfKeeping It a SecretIgnoring Your Physical NeedsAvoiding 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 realOffer ongoing supportLet the parent talk about the baby and share photos, stories and memoriesOffer to help with tasksBe 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 themEncourage 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 deathRead them stories that talk about death and lossAsk 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 ritualsAsk a counselor to meet with you and your children to help all of you understand your feelingsTell 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 relationshipMen 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 storiesBoth partners may feel their own emotions are "wrong" and feel bad about not having the same grief reaction as their spouseOften 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 understandEctopic 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 decisionStillbirth: 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 informationPalliative 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 babyA 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 pregnancyGrief work includes remembering

At the Time the Baby Enters the World

Hold Your Baby in Your ArmsName Your BabyBathe Your BabyDress Your BabyFootprints/Handprints and CertificatesTake PicturesVisitation

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 holidaysSay a prayerWrite a poem or letterPaint a pictureRelease balloons or butterfliesPlant a tree or a small garden

Later On: Rituals (Cont’d)Have a piece of jewelry madeDonate to a charity or give something to a needy child who is about the same age as your baby would beGet involved in a special project dedicated to your baby or volunteer with a charityHave 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 youMaking personalized choices for your baby helps to honor your baby as a personSince funeral planning is something we are used to after a death, it may help you come to terms with the sudden loss of your babyIt 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 hospitalThe 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