Supporting Parents Through Grief After a Stillbirth or Perinatal Death

By Adj Assoc Professor Leanne Raven, CEO Red Nose , Jill Green, National Co-ordinator of Services, Red Nose and Petra den Hartog, Bereavement Counsellor, Red Nose.1

‘The death of a loved one is hard to understand at any time but, the loss of a baby is incomprehensible. Yet this loss is experienced by one in every hundred families. For those families, the stillbirth or death of their newborn is something that will affect them, and their families for the rest of their lives…with the loss of their baby, many parents feel the loss of their hopes, dreams and the plans they wished for the future’.2

In Australia, nearly 1 in every 130 women reaching 20 weeks gestation will have a stillborn baby3. Of the 2,992 perinatal deaths (death after 20 weeks gestation and in the first 28 days of life) in Australia in 2011 over 70% were stillbirths.

While infant mortality rates (deaths of live born babies within the first year of life) have declined4, there has been no reduction in the rate of stillbirth for the past 10 years5,6. These figures are in line with deaths due to breast cancer7; however stillbirth remains relatively invisible and unrecognised.

The impact of stillbirth

For every parent expecting to welcome a new life into their family, going home from the hospital with empty arms is the most devastating experience that can happen. The sudden and unexpected death of a baby or child has been described as the ‘ultimate tragedy’8. In the past, women were told to go home and ‘try again’; stillbirths were not mentioned and mothers were not asked whether they wanted to hold the baby9, no photographs were taken nor mementos collected10.

Although we have improved as a society and have begun to acknowledge the impact of a stillborn baby on parents and their families, there needs to be more recognition of the grief and pain, and of the heartache, inherent in such loss.

Society provides little guidance as to how these babies are to be mourned and how family and friends should respond. As these babies were premature, or died during labour or soon after birth, they are not yet a reality for many in the parents’ networks and may not even be real to one or both parents. Few people will have seen the baby and the relationship between parents and him or her is often unacknowledged.

Mothers and fathers are likely to respond differently if there is no apparent cause given for the death, especially where there is no post mortem. The mother has carried the baby, probably bonded with it early, so for her the loss will not only be that of a baby but part of herself. She may well feel responsible, that she has done something to deserve what has happened, failed to look after herself or believe that her body has let her down. The ‘what ifs’ and ‘if onlys’ often preoccupy her wakeful nights. She will need time to recover from the birth and possible procedures such as episiotomy and other conditions associated with pregnancy. Simultaneously she will have to assist with organising the funeral and deal with family and friends.

The father, on the other hand, sometimes feels that his partner’s loss is more profound than his and so he has less right to grieve. However, if her life was in the balance during or after delivery, his main concern will be for his partner, making it difficult for him to articulate his feelings and grieve for his baby.

What support do parents need after a perinatal death?

Over time everybody will experience multiple losses in their lives and most people will not need bereavement counselling to assist them with these losses as they will over time adapt and adjust to life without their deceased family member / friend etc. However, there are certain losses that people experience that are more problematic, where it is extremely beneficial to receive counselling and peer support. These losses are bereavement through suicide, murder and the death of a child. These are particularly challenging losses and become more challenging when they are sudden and unexpected. Parents and families can experience both the effects of trauma as well as profound grief.

How we care for and support parents, and their experience in hospital, is crucial and can impact on the way they grieve and their future wellbeing. Parents spend little time with their baby and have few positive memories to sustain them. Giving birth to a dead baby, or one who will die during delivery or soon after, is excruciating and brings a sense of helplessness and disbelief. It is also deeply distressing to see a baby struggle on life support, especially if mother and baby are separated. Given a very negative experience, grief becomes complicated and prolonged. The stillbirth of an IVF baby can be particularly distressing. Parents have often made several attempts to become pregnant and each loss compounds the grief. In these circumstances, life can have little meaning.

Red Nose Grief and Loss advocates strongly on behalf of the families we support who have experienced perinatal loss for improvements in the level of knowledge and management practices when babies are miscarried, stillborn or die in the neonatal period. The PSANZ Clinical Practice Guideline for Perinatal Mortality has been developed to support midwives in providing best practice for bereaved parents and their baby.

See www.stillbirthalliance.org.au/guideline1.htm

Getting external help

Many people also benefit from outside professional assistance. This is particularly important for some families who receive little help and acknowledgement, as well as for those whose relationship is strongly impacted by grief.

In the late 90s Red Nose Grief and Loss expanded its services to support not just families where the baby died from SIDS but families who have experienced the sudden and unexpected death of a baby or child in pregnancy, birth, infancy and in childhood regardless of the cause – the majority of these families have experienced the death of their baby in the perinatal period.

The death of a baby is a tragic and devastating event. The journey through the grief process takes time, empathy, understanding and support. A strong support structure is an essential component in allowing families to ‘own’ and normalise their grief, understanding that they are experiencing a ‘normal’ reaction to an abnormal event in their lives. Our core perinatal bereavement support services provide choices for parents and their families and assists in building resilience within the bereaved families’ community.

Support available through Red Nose Grief and Loss includes:

  • Professional counselling helps guide couples or individuals through their grief and learn ways to handle stress and feelings of guilt, anger and resentment. Red Nose Grief and Loss counselling services include face to face counselling for individuals, couples and families, phone counselling, email counselling, sibling counselling and a Bereavement Support Helpline operating 24 hours a day, 365 days a year. All of our counselling support, group support and peer support options are offered to families, friends and carers around Australia free of charge.
  • Trained Parent Supporters, themselves bereaved parents, can provide support and a sense of ‘hope’ to individual parents and other family members. They can provide the support to show bereaved parents how it is possible to heal, to go on to have other children or to see and recognise the possibilities of learning from their own experience and contributing back to others down track.
  • Support groups - A diverse range of group/workshop options are provided. These groups allow parents to share their experiences and work through their grief. Feelings of loneliness and isolation can be reduced and new friends made. These groups include fathers groups, kids groups, coffee mornings, termination support groups, treasured babies programs and creativity in grief groups (art therapy), bereavement journey workshops and grandparent groups.
  • Sibling programs – information, resources and activity based programs are provided for siblings with children’s groups often run during school holidays.
  • Internet support program – this moderated forum for bereaved parents and family members provides an opportunity to connect with others whose experience is similar at any time and from any location.
  • Memorial services - provide opportunities to honour and remember the precious babies who have died and to raise community awareness.
  • Bereavement support newsletters - for bereaved families who wish to connect to a wider community of people who have experienced the death of a baby or child.
  • A range of booklets - in particular When Relationships Hurt, Too focuses on the impact of grief on parents’ relationships after the sudden death of their child, while Treasured Babies is a booklet written from the collective experiences of parents whose babies have been stillborn or died in the newborn period, it guides parents through valuable information following the death of their baby and shows that while every parent’s experience of their loss is different, the impact of grief is similarly great.

For more information call Red Nose Grief and Loss on 1300 308 307.


Last reviewed: 17/12/18