Every day in the UK, 17 babies die at birth or within the first 28 days of life. Judith Schott and Alix Henley explore the effect that grief has on the whole family and the support needed from the primary care team
Judith Schott and Alix Henley Improving Bereavement Care Team Sands, the stillbirth and neonatal death charity
The grief of parents following a late miscarriage, stillbirth or neonatal death is commonly profound and longlasting. It affects their physical, emotional and sometimes financial well-being and has negative effects on their children and the extended family. Parents often feel isolated once they return home, as friends and family are often unable to offer support. Care from the primary care team is therefore essential and staff need to take the initiative in making contact as soon as the parents return home from hospital. Extra care and support are needed in the long term and especially during and after all subsequent pregnancies. Journal of Family Health Care 2010; 20(4): 116-118
_ Every day in the UK, 17 babies die at birth or within the first 28 days of life
_ The ways in which grief is or is not expressed are heavily influenced by culture, ethnicity and religious belief
_ It is important to recognise and acknowledge fathers' as well as mothers' grief
_ The death of an expected baby affects the whole Family
_ The sad reality is that many parents receive little care, or none at all, once they go home
Leaving hospital with empty arms is the beginning of a long and lonely journey through grief. Instead of phoning friends and family to announce the arrival of a son or daughter, the parents have to break the devastating news of the death of their baby. They return to a home where preparations have been made to welcome a new member of the family. The baby clothes and equipment they chose with such care and anticipation are now redundant. Their hopes and dreams have been dashed. Instead of a baby blessing or christening, they are planning a funeral. They receive bereavement cards instead of congratulation cards. Instead of registering a birth, they have to decide about having a post-mortem and have to register their baby's death.
Every day in the UK, 17 babies die at birth or within the first 28 days of life1,2,3. Every day, 17 families are shattered by a loss that most people think is rare. The hard truth is that these losses amount to ten times the number of cot deaths and twice the number of road deaths. They are the equivalent of 16 jumbo jets crashing each year with no survivors.
Grief and loss
It is now recognised that the grief experienced by parents whose baby dies during pregnancy or at or shortly after birth is profound. Their physical, emotional and, in some cases, financial well-being are jeopardised, and it can take many months or years before they regain a new equilibrium. Peppers and Knapp4 found no significant differences in the grief responses of women who had had a miscarriage, a stillbirth or a neonatal death. A shorter gestation does not necessarily carry less emotional investment for parents5,6. Women who terminate a pregnancy for fetal abnormality, even when they feel that they have made the right decision, may experience grief that is as intense as the grief of women who have had a spontaneous perinatal loss7. Twins and other multiple pregnancies carry a higher risk of perinatal death. Parents of these babies may have to cope with the conflicting and contradictory feelings of grief for a baby that dies, and hope and perhaps fear for the surviving baby.
The survival of one or more babies does not compensate for the death of another. Parents grieve for the loss while caring for the surviving baby or babies. Although the experience of grief is universal8, the ways in which grief is or is not expressed are heavily influenced by culture, ethnicity and religious belief. "We grieve as we are expected to grieve9." It is therefore not possible to judge the true impact of the loss on any individual by the way they do or do not express their grief.
Until recently there was a tendency for everyone - staff, relatives, friends and sometimes men themselves - to see fathers as supporters rather than as bereaved parents. It is important to recognise and acknowledge fathers' grief, allowing them to grieve in their own way, without having to comply with other people's expectations. When he is present, the baby's father should be asked how he is and listened to, actively included when information is given to the mother, and offered sensitive support and care in his own right. Same-sex partners should receive the same consideration and support.
Grief and couples
The pattern and expression of grief is very individual: couples often find that their needs and feelings do not coincide. They may feel distant from each other: both parents may feel misunderstood and unsupported. Sexual problems are also frequent10. It can be helpful for couples to understand that these differences are common, and that, although it can be difficult, taking time to listen to each other may enable them to understand each other better.
Grief and children
The death of an expected baby affects the whole family. Children of all ages are likely to be profoundly affected, not least by their parents' grief and preoccupation. Changes in behaviour are common, and parents may need help and advice to enable them to understand and deal with difficult or unusual behaviour. Parents of children who knew that a new baby was expected may want to discuss what to say to their children about the death. Parents may also find it helpful to know that some children worry that the death was their fault. After all, most children feel ambivalent about the arrival of a sibling.
Grief and grandparents
Grandparents suffer a double whammy: the loss of an expected grandchild as well as the pain of witnessing the grief of their child and his or her partner, and being unable to protect them. In many cases the loss reminds them of childbearing losses that they themselves may have suffered, in an era when there was little or no recognition of the impact of such losses.
Most parents do not want to forget their baby. Instead, they incorporate their memories of their baby into their lives and learn to live with what some parents describe as a "new normal". Grief has been described as being like a wound that can reopen time and again8. New waves of grief can be triggered by a sight, sound or smell that is associated with their baby's death.
Certain times of the year may be particularly difficult, for example, the anniversary of the baby's birth and death, birthdays, festivals and family celebrations. Grief may also suddenly recur at would-have-been milestones such as learning to walk and talk, going to nursery, starting school or going to university. The milestones of a surviving twin or triplet, although joyful, are also often powerful reminders of what-might-have-been for the baby who died.
What do parents need from the primary care team?
The care now given to bereaved parents in hospital has greatly improved, and most are appreciative of the care and support they receive. However, most parents also say that the reality of their loss only begins to sink in when they return home. Many feel extremely vulnerable and isolated: friends and family often do not know what to say or how to help. Parents often say that friends and acquaintances cross the street to avoid talking to them, and that they only discover who their real friends are at this critical time.
Many parents assume that their midwife or general practitioner (GP) will know what has happened and will contact them - if this does not happen they feel even more isolated and abandoned. Some may feel that they do not deserve care because they do not have a baby. But the mother needs normal postnatal care and help with distressing symptoms such as lactation, and both parents need continuing support and empathy from health care professionals. The sad reality is that many parents receive little care, or none at all, once they go home.
Good communication between the maternity unit and the primary care team is essential: GPs, midwives and health visitors must be informed as soon as a loss occurs so that they can take the initiative and get in touch as soon as the parents return home. It is also important that there is excellent communication within the primary care team. Parents are caused unnecessary additional pain if they have to explain time and again to different professionals that their baby has died. No health professional should ever be put in the position of turning up at a front door totally unprepared for the fact that the baby has died.
One way to ensure that all staff are alerted to the parents' history is, with their consent, to mark the outside of their notes with a Sands "teardrop sticker" (see Resources).
There will shortly be a downloadable version of the sticker for electronic notes. Ideally, parents should be offered at least one initial home visit, preferably from a health professional whom they already know. They should be encouraged to make appointments with their GP whenever they want to. Visits from the midwife or health visitor should continue for as long as the parents need them. Mothers who come home within a few hours of the birth may have been unable to take in much of the practical information that hospital staff gave them, for example about how to look after themselves, or about funeral options, and may need to go over the information again and discuss what to do. As well as talking about physical symptoms and how they are coping, parents may need to tell their story again and again, to talk about their baby, and to share their mementos and photographs with someone who will listen. Parents appreciate staff who give them time and show empathy, and who use their baby's name if one was given.
Parents often find it very hard to return to the hospital where their baby died for the postnatal check-up or to discuss post-mortem results. Some women may prefer to have their postnatal check-up at their GP surgery. Some parents may also want to talk to their GP after they have discussed the post-mortem results with the consultant. They may need support in coming to terms with the results, whatever these may be.
Many parents find it helpful to talk to others who have had similar experiences. Staff should offer parents information about relevant national and local voluntary groups and, if possible, give them written information about how to get in touch. It takes many parents a long time to pluck up the courage to make contact, but if and when they do, most derive invaluable support from people who probably understand them better than anyone else can.
Many bereaved parents find themselves facing unexpected financial strain. Even though their baby has died, they may be entitled to certain rights and financial benefits. These depend on, for example, the length of the pregnancy, whether the baby was stillborn or lived for a short time after the birth, employment status, and earnings before the birth. However, few bereaved parents are likely to think about benefits and up to now there has been no easy way to find out about their entitlements. Moneymadeclear, which is part of the new Consumer Financial Education Body, has recently produced a leaflet about benefits specially aimed at bereaved parents. Hospital staff should distribute this to all parents who have had a late miscarriage, stillbirth or neonatal death. The leaflet could also be distributed by community staff to bereaved parents who do not have one. Health professionals can order copies at: http://www.moneymadeclear.org.uk/parents/contact/contact_form.html The leaflet can also be downloaded from: www.moneymadeclear.org.uk/parents/resources/pdfs/bereaved_parents_leaflet.pdf
Returning to work
At some point most parents will need to return to work. Partners are only entitled to two weeks leave: those who need more time should be encouraged to ask for sick leave.
Mothers are entitled to a year but may need to return earlier for financial reasons, or may want to go back to work to fill their days. Nevertheless, returning to work is often a major hurdle. Grief is exhausting, and parents may find it hard to focus or concentrate. Things that seemed important before their baby's death may now seem unimportant. They may also be anxious about how their colleagues will react and what they may say. Sands produces two leaflets for parents on returning to work after a loss, one for parents themselves and one for employers (see Resources).
Deciding about another pregnancy
At some stage, parents may want to think about another pregnancy. This is often a hard decision as most parents are terrified that the same thing could happen again. Some may face time pressures because of the mother's age. A few may have to consider whether they can cope with, or afford, another round of in vitro fertilisation (IVF).
Couples may not always agree about the timing of another pregnancy. One small study found that men were more likely to want to start another pregnancy sooner than their partners11. It can be difficult for parents to discuss these matters with other family members, who often hope that another baby will make everything all right again. They may need listening and support from a member of the primary care team, or in some cases counselling.
During and after subsequent Pregnancies
Any pregnancy after the death of a baby is highly stressful. Reassurance that everything will go well this time is unhelpful. After all, everything probably started out well last time.
Most parents welcome extra support, additional check-ups, and frequent opportunities to talk to empathetic health care staff. It is important that the staff caring for these parents understand their fears and avoid making them feel that they are over-reacting.
Some parents will be happy to return to the same hospital for subsequent births, but others may find this too difficult. They may need to be referred elsewhere, or at least to a different consultant.
As mentioned above, family and friends often hope that the birth of a healthy baby will "cure" the parents' grief. But, paradoxically, the birth of a healthy baby can trigger memories of the loss and cause renewed intense sadness. Many parents feel unable to tell other people how much they are suffering when they "should" be happy. They are likely to need extra support and understanding from health professionals in the community in the weeks and months following the next birth, and following all subsequent births.
Support for health professionals
Supporting bereaved parents immediately after a loss, and caring for them during and after subsequent pregnancies, is demanding and stressful for health professionals. It requires patience, self-awareness and an ability to manage one's own anxieties and fears. It should not be left to newly qualified staff.
Supervisors, managers and colleagues need to ensure that the staff undertaking this work are offered mentoring and support. All staff should be able to attend training on loss and grief and on how to support parents who terminate a pregnancy for fetal abnormality, or who have a late miscarriage, a stillbirth, or a neonatal death.
The care that parents receive in the weeks and months after their baby dies can have a profound effect on their long-term well-being. Poor care, or the absence of care, increases distress and isolation and, while good care cannot remove the pain of grief, it can make all the difference to the parents' ability to gain a new equilibrium and cope with life once more. Good care and sensitive support, both at the time of the loss and in the weeks and months that follow, are therefore essential for the future well-being of the whole family.
This article is based on Pregnancy Loss and the Death of a Baby: Guidelines for Health Professionals, published by Sands (the stillbirth and neonatal death charity). See Resources.
References1. Office for National Statistics [ONS]. Infant and perinatal mortality 2008: health areas in England and Wales. Statistical Bulletin. Newport: ONS, 2009
2. Registrar General Northern Ireland. Annual Report 2008. Belfast: Northern Ireland Statistics and Research Agency, 2009
3. Scotland's Population 2008 - The Registrar General's Annual Review of Demographic Trends. General Register Office for Scotland, 2009
4. Peppers LG, Knapp RJ. Maternal reactions to involuntary fetal/infant death. Psychiatry 1980; 43(2): 155-159
5. Mander R. Loss and Bereavement in Childbearing (2nd edn.) Abingdon: Routledge, 2005, p 41
6. Bagchi D, Friedman T. Psychological aspects of spontaneous and recurrent abortion. Current Obstetrics and Gynaecology 1999; 9(1): 19-22
7. Zeanah CH, Dailey JV, Rosenblatt M, Saller DN. Do women grieve after terminating pregnancies because of fetal anomalies? A controlled investigation. Obstetrics and Gynecology 1993; 82(2): 270-275
8. Cowles KV. Cultural perspectives of grief: an expanded concept analysis. Journal of Advanced Nursing 1996; 23(2): 287-294
9. Parkes CM. Bereavement. British Journal of Psychiatry 1985; 146: 11-17
10. Swanson KM, Karmali ZA, Powell SH, Pulvermakher F. Miscarriage effects on couples' interpersonal and sexual relationships during the first year after loss: women's perceptions. Psychosomatic Medicine 2003; 65(5): 902-910
11. Turton P, Evans C and Hughes P. Long-term psychosocial sequelae of stillbirth: phase II of a nested case-control cohort study Archives of Women's Mental Health 2009; 12: 35-41
Useful organisations for professionals and parents
ARC (Antenatal Results and Choices) Information and support for parents throughout antenatal testing and when a significant abnormality is detected in the unborn baby. http:/www.arc-uk.org Helpline: 0207 631 1285
BLISS The premature baby charity. Support, advice and information for families of babies in intensive care and special care, including bereaved families. http:/www.bliss.org.uk Helpline: 0500 618 140
Cruse Bereavement Care UK-wide bereavement charity with network of local branches offering support from volunteer trained bereavement supporters. www.crusebereavementcare.co.uk
Sands Support for anyone affected by the death of a baby. http:/www.uk-sands.org Helpline: 020 7436 5881
Teardrop stickers can be ordered online: http://www.uk-sands.org Go to Shop and select Health Professional Resources. There will shortly be a downloadable version of the sticker for electronic notes. Leaflets and other resources are available for bereaved parents and families, including one for bereaved parents returning to work and one for employers. Resources including books and training are available for professionals.
Working Families Information leaflets and helpline for families on low incomes, campaigns for working families. www.workingfamilies.org.uk Helpline: 0800 013 0313