ANTICIPATORY GRIEF

INTRODUCTION

 Some parents find out during pregnancy, or at a time after a child is born that their child has a life threatening condition. The complicated feelings and emotions parents experience when living with a devastating diagnosis is known as anticipatory grief.

This pamphlet is intended to provide some information to parents (and those supporting them) expecting the death of a child, whether in pregnancy or at any other age.

What is Anticipatory Grief?

Anticipatory grief is similar to the normal process of mourning, but it occurs before the actual death (in anticipation of the death). It includes all of the thinking, feeling, cultural, and social reactions to an expected death that are felt by a family.

Anticipatory grief can include depression, anger, confusion, extreme concern for the dying person, preparing for the death, and adjusting to those changes associated with this time.

Depending on the situation, anticipatory grief may give the family more time to slowly get used to the reality of the loss. People may be able to complete unfinished business with the dying child (for example, saying "good-bye," "I love you,")

Anticipatory grief may not always occur. It also does not mean that before the death, a person feels the same kind of grief as the grief felt after a death.

There is not a set amount of grief that a person will feel. The grief experienced before a death does not make the grief after the death last a shorter amount of time.

Every individual and family is different and experiences grief, death, and illness in their own unique way. Grief and mourning do not have specified volumes or time restrictions, and there are no 'right' or 'wrong' feelings.

Anticipatory Grief and The Newborn Baby 

Anticipatory grief can occur when a diagnosis is made in pregnancy which predicts death of the child before or soon after birth. Anticipatory grief means that parents begin their journey of grief while their child is still alive - and as the pregnancy progresses. The change from "cure" to "care" of a baby can be quite sudden, and feelings of confusion, intense shock and disorientation are very common. You may be having to make a series of traumatic decisions in short periods of time. There may be feelings of regret and guilt over decisions that need to be made. Whilst this is occurring, the mother may be experiencing additional grief due to breast milk production and other physical aspects of childbirth.

Physical and psychological support and advice regarding lactation suppression is very important, as the ongoing production of breast milk is emotionally painful for many women.  

Bonding and Creating Memories 

Attachment bonds can be forged very early in a pregnancy. With modern ultrasound technology, strong bonds may be formed by a whole family far earlier in a pregnancy than in previous times. This normal process of attachment and bonding with a baby is likely to be confusing and confronting for parents who know their baby will die.

Some parents consciously or unconsciously try to hold back this attachment, hoping that in doing so the pain of separation will be less when death does come. Other parents allow themselves to fall deeply in love with their dying child, treasuring every moment, but often living in fear that their time is so short.

Again, there are no right or wrong ways to feel and act during this time. The following ideas may perhaps may be of some assistance to you. As the infant's life may have been short there is a need to create memories and mementoes that provide tangible evidence of your baby's existence. This can be very important in helping people with the death in the months and years to come.

It is important that as parents you have the opportunity to spend time with your infant in a way that is meaningful to you, and to have mementoes of those experiences together. Often this is cuddles with yourself and other family members, bathing and dressing. Photos are very popular mementoes, and so are hand and footprints and a lock of hair. Some parents may choose to have a baptism service / prayers / naming ceremony at the bedside before life- support is withdrawn.

For cultural reasons, some parents may not choose to do these things, and that is a personal choice which must be respected. Having a friend or other support person to explain your wishes to medical staff can be helpful.

Sibling and Other Family Members

Sibling involvement may be forgotten by medical staff and others during hospital stays. It is important for brothers and sisters of the dying child to understand what is happening. Grandparents, uncles, aunties, and close friends can play an important role in helping siblings understand what is occurring and supporting the parents with the care of siblings.

Some adults may believe siblings "will not understand", "don't need to know" or "will be upset" by seeing the baby dying. Hence many parents' first instinct is not to involve them. However, young children are very accepting of events and generally not upset by the death per se. Yet they can easily feel left out and abandoned by their parents, and may have feelings of responsibility for the death. Sibling involvement is therefore encouraged.

Cradle Support Group 

Cradle NT is a volunteer organization which provides support for parents who have lost a child at any age.

The group holds monthly support meetings with the opportunity for personal and group discussions. The type of support received by families during the time of grieving and loss is of crucial importance for their subsequent psychological and physical health, their social adjustment and relationships between partners.

Support group meetings are held on the second Saturday of each month at the Darwin Private Hospital Board Room at 10am. Support and counselling can be arranged for people not in Darwin.

CRADLE NT INC.

PHONE: 0438 272 353