Grieving for our baby

As soon as we know that we are expecting a baby, our baby is real, a part of us. Long before we see him*, he is the focus of our hopes and dreams: we wonder what he will look like and how his personality will develop; we choose names and imagine his place in our family. When our baby dies, part of us dies too. Although we knew so little of him and time has been so short, the loss is overwhelming. At whatever age our baby dies, we experience the same shock: the life we looked forward to sharing will now not happen, and we shall never know the person he would have become in adulthood.

How our baby died

When our baby dies as a result of a miscarriage or a stillbirth, then we have had no relationship outside the womb. Sometimes we will have had warnings that something was wrong: the pregnancy may have been hazardous, or we may have noticed a sudden change which worried us. We may have known that our baby would be born dead, had time to look at a scan, and begun to comprehend the news before we gave birth; or we may have had to face it during labour or in the minutes after giving birth. Hopefully, we are together as parents so that we can support each other. It is hard to mourn someone you have known only as a part of yourself - felt as a kick, bump or a flutter. There is a dimension missing because they have not yet had a separate existence, but they are more than just a part of us: they are also themselves.

When we suffer a neonatal death (within the first weeks of life), our baby is born alive but is too frail to survive. We may know from the outset that their hold on life is tenuous, and spend agonising days in intensive care as they struggle to live and breathe. They may be extremely small and premature, or suffering from some life-threatening condition. Often their treatment means that we cannot hold them in our arms as we would wish; and the tubes and monitors necessary to keep them alive are a barrier. Each day and hour becomes a roller-coaster of hope and despair as we watch their struggle, but are powerless to affect the outcome. We have had no time to welcome our baby into the world before we must confront the possibility of their death. This awful situation has no predictable duration. If we have other children, we will find ourselves worrying about them, feeling that we are not looking after them properly, yet knowing that this is the only time we have to be with this baby.

If we have had a multiple birth, perhaps after lengthy IVF treatment, we will be devastated, as one baby survives, but we have to suffer simultaneously the loss of their brothers or sisters. We want to celebrate the safe arrival of our child, however frail; but the death of their sibling cuts us off from those feelings and locks us into a world of grief. Once we return home with our surviving baby, we may find that people almost ignore our loss, thinking - or even saying - that we should be happy to have at least one. The trauma of that day when we went to register both a birth and a death will always be remembered.

Cot death comes as a totally unexpected catastrophe, as we are beginning to settle down as a family. There is no obvious reason for our baby's death, yet we feel that we should have been able to prevent it. We are racked with guilt that our baby could die without some instinct alerting us to the problem. We go over and over the last hours, worrying that we missed something, that we did something wrong. We feel that it is our fault, no matter how much the professionals tell us otherwise.

Any child's death will make us feel that we have not been proper parents; it was our job to protect him, and we have let him die.

When our baby has a terminal illness, we may know our time together is limited yet still find that the death is unexpected. We knew that he would die one day, but not now, not yet. We may have watched him become weaker and known that he could not stay alive much longer, and yet his death is a shock, an unacceptable fact that we cannot change, and our grief is none the easier. Deep down, none of us accepts that our baby could die; we cling on to hopes of a miraculous cure. We may have heard the facts, known them in our minds, but that does not mean that our hearts have comprehended, let alone accepted, the emotional reality.

Our thoughts and feelings

Our family is in a state of shock; we feel numb with disbelief, and, probably, it is this numbness that gets us through the first few hours. We will inevitably have contact with the medical services, and sometimes the police. Although we may want to understand fully the circumstances in which our baby died, our shock can prevent us from asking questions, or absorbing what we are told. Some decisions have to be made quickly: we may want somebody to bring our other children to the hospital, so that we can be together as a family in the hours after the baby's death. Hopefully, the days when the baby was taken away hurriedly - as if the sight of him was somehow unsettling - are in the past. Hospitals are more sensitive to our emotions and recognise that we will need time to be a family, that these early hours are precious. If our baby has died at home, we may wish to prolong this time together, carrying him into the garden, holding him close in a favourite chair, sitting by the cot. If a baby has died suddenly, there will be a post-mortem examination, and so they are taken away from us.

Each member of the family will have his or her own thoughts and feelings. For mothers, the intensity of the loss is exacerbated by other things. If we have only recently given birth, our bodies will be in hormonal turmoil and our breasts will be ready to feed our baby. If we have had a Caesarian, we will be literally wounded, feeling confused and unreal because we have not yet recovered from the anaesthetic.

We may be in a maternity ward, surrounded by other mothers and babies, longing to go home, but when we do, this may be the moment when the reality of death confronts us. Our bodies take time to recover from the birth, a constant reminder of what we have lost. When we return to the hospital for our check-up, the medical services sometimes behave as if it is the end of a chapter, as if the episode is closed, when for us our grieving has hardly begun. This is a good opportunity to ask questions or to arrange an appointment with the consultant to discuss unresolved issues around the baby's death. Suggestions may be made about how soon it is advisable to 'try again', which can sound like the ultimate disloyalty to our son or daughter, as if we are already thinking about a replacement. We may be feeling intense anger at the health professionals, even if the rational part of us knows that they were not negligent or culpable; we may experience an overwhelming sense of personal guilt that we did something that harmed our baby during the pregnancy, or that, had we acted differently, our baby would be alive.

As fathers, we share some of the emotions but we face different problems. We watch our partner's pain as well as feel our own. We may only truly grasp the reality of the baby and our love for him when he is born. We will be angry at what has taken place, but the one thing that we cannot do is make it all come right. Usually in the front line for passing on information to relatives and friends, we have to bear the brunt of phone calls, often to people who are expecting to hear good news. It seems that our grief and loss go largely unrecognised, as sympathy is focused on the mother. We want to say, "He was my son too." Many practical arrangements will have to be sorted out, and dealing with our other children. There has to be a discussion about what to do with the baby things waiting at home for the new arrival.

If we have other children, we have to tell them that their brother or sister has died. We now know that even very young children feel loss: their close attachment to their parents means that they experience grief, even when they cannot understand or talk about it. Even a surviving twin, who has known a brother or sister only in the womb, can later tell of feeling bereaved. It helps if we can be together as a family, and, if possible, spend time with our dead baby. One of the worst things for our surviving children is to feel shut out, not understanding what is going on.

Grandparents are very likely to be profoundly affected by the death of a grandchild of any age. On the death of a baby, they feel that they never had a chance to get to know him; a life that touched them so deeply and yet so fleetingly has gone for ever. It seems against nature when the young die and the old live on. Many grandparents wish that they could have died in place of their grandchild. There is the added torment of seeing their children and other grandchildren suffer such distress.

We are fortunate if some of our relatives and close friends try to support and understand us in our loss. We need to be able to talk freely, so that our baby becomes a real, permanent and acknowledged member of our family. Sometimes people avoid us because they do not know what to say, or they feel that death is somehow 'catching'.

In a desire to help, people say hurtful things unwittingly. Those of us whose baby was born with a major disability have probably heard someone say, "It was better this way, better that he did not live." To us it cannot be better to have a dead baby. Many people try to comfort us by saying, "You can always have another one," not realising that what we want to do is think and talk about what has happened, and our love and thoughts for this baby. Most of the comments we find hurtful are said out of ignorance: there is a genuine wish to help without knowing how. Perhaps, we ourselves in the past have not made appropriate responses to grieving parents. It is difficult to remember how we thought and felt before we experienced the devastating loss of our own child.

In the future

Some of us will have another baby. If we succeed in integrating the memories of this present time of loss and grief into our family story, it will be easier for new members of the family to feel the continuity, even though they were not born when their brother or sister died. We can help to achieve this by keeping photographs and mementoes, perhaps in the family album, so that the baby we have lost is recognised, named and talked about. The wholeness of the family is maintained; though later children will feel sorrow that they never knew their older brother or sister, they do at least have a place for him within their hearts.

If we do have another child, our feelings during the pregnancy will be complicated by our previous loss. We may fear that this baby, too, will not survive; this can cause us to become over-anxious, and hardly dare to acknowledge the expected birth. Even when our baby is born strong and healthy, we may find it hard to overcome these sad memories, and to bond with the baby as we would wish. Hopefully, these are feelings which pass quickly and we can all enjoy the new baby, though anxieties may linger. We will never see them as a replacement, whatever others might unthinkingly say to us, and we can love and celebrate them as themselves, a new and unique member of our family.

The things that help us survive

When our baby dies, we need evidence that this short life did happen. Photographs, whether they are scans, polaroid shots taken by a nurse in hospital, or family groups, are clear reminders of our baby; so are hand/foot-prints, a lock of hair, and the hospital wrist-band put on when he was born. All these affirm that our baby lived and is part of our family story. We may have regrets that there were things that we did not do at the time, but we must not be hard on ourselves: we can find comfort in knowing that we did the best we could in the situation. We want our baby to have a place in our family, for his brothers and sisters to know that he existed. We all wish that our baby could have lived a long and happy life. However difficult and painful his short life was, few of us will wish that our baby had never been born. When we acknowledge our loss and accept our pain, then our baby's life becomes transformed into a loving memory that is part of us for ever.