When a baby dies suddenly and unexpectedly, the shock is likely to be devastating. Jean Simons, FSID’s Bereavement Support Manager, explains how cot death impacts on a family and what can be done to help.

Cot death - the impact on a family...

The bereaved parents

Parents usually go over and over in their minds the events surrounding and immediately following the discovery of the death; compulsively recalling all their thoughts and actions which could have ‘caused’ the death. There is a need to blame someone or something, and in the absence of a known cause of death, parents often blame themselves. Feelings of guilt, however unjustified, are common, and do usually lessen with time. Such feelings are not usually lessened initially merely by telling the parent he or she was ‘not to blame’.

Overwhelming feelings of loss and sadness can make it difficult to make decisions or concentrate for any length of time. Even if you can sleep, you may feel exhausted. Grieving people may fear they are going mad, as they experience emotions of initial numbness, giving way to sometimes intense periods of anger, or even disbelief and denial. Many parents say that their baby is always on their mind, that they experience physical sensations such as aching arms, and hearing the baby cry. Some have a need to continue with the routine child-caring tasks, and derive some comfort from caring for the baby’s clothes and possessions as meticulously as when the baby was alive.

Religious beliefs may be questioned, confidence in the natural order of things may be shattered, and parents may fear that something else terrible is going to happen. It may be difficult for parents to imagine or envisage how they can carry on, how they can find the strength to support each other, or care for other children.

These feelings and experiences may seem irrational and inexplicable to the grieving parent as well as to those who love and try to support them. However, they are likely to be normal for the shock and grief of their baby’s sudden death.

How you can help

It is not helpful to try and ‘talk parents out’ of these feelings, or to try and deny their intensity. What IS helpful is to listen to the parent’s feelings and accept their experiences; they may need to repeat their story many times.

It can be very hard for family members and friends, with their own grief, to hear the intensity of the parents’ pain, and the FSID Helpline can be a very important and appropriate source of support, as can a special befriender, who having themselves experienced the sudden death of their baby, can offer truly understanding, non-judgmental support.

There is no appropriate ‘timescale’ for grief, and no one at FSID will consider that a bereaved parent should be ‘getting over’ the death after a certain time.

However, some experiences are almost universal.

Bereaved parents’ experiences

Many parents describe ‘functioning in a fog’ during the first few weeks after their baby’s death. They may experience the funeral as ‘being an observer’, or ‘not really being emotionally involved’. These reactions of an emotional numbness are nature’s way of helping get through the immediate aftermath of the death of the baby.

Birthdays, holidays, and the anniversary of the death can also trigger periods of intense pain and suffering. These are all normal reactions.

Partners may experience grief differently, and may have difficulty in sharing feelings. One may want to talk often about the baby while the other may not even want to hear the baby’s name spoken.

Fathers

Friends and relatives often treat mothers and fathers differently after the death of a baby. Fathers are often asked ‘how is your wife?’, and people may forget to say ‘how are you?’. As one Dad told FSID:

“My wife was being treated as having lost someone she loved. I was being treated as having lost someone I was responsible for. I felt like shouting ‘I loved him too, you know!’.”

Fathers may feel it is their job to discourage looking back and to start facing the future. They often refuse help or don’t ask for support when it might be helpful. There are male befrienders at FSID available to support fathers, if a man feels that he would like to talk, but who understand his need to ‘stay strong’.

Couples may misunderstand each other’s responses, so need to be open and honest about their own, differing needs, and accept, if they can, that their partner’s way of grieving is just as ‘valid’.

Work

Returning to work can be a difficult time for those parents who are employed. Many colleagues will be unsure of whether or not to say anything about the baby’s death. Most people do care, but they may find it difficult to express their sympathy. One parent told FSID:

“It was awful going back to work. I was terrified of embarrassing myself by bursting into tears, everyone else was terrified of me, not knowing what they should be saying or doing.”

Many parents, particularly mothers, are not in work when their baby dies. If parents had decided to leave work or take maternity leave, they may find it difficult, when they return, to explain the change in circumstances. It may be helpful to ask the employer to tell colleagues what has happened before returning.

Brothers and sisters

Parents are often anxious about how their other children will be affected by the baby’s death. It is important to be honest and tell children what’s happened and to answer their questions truthfully. FSID can help and advise, and signpost other helpful specialist services

Some of the things that are said to children, with the kindest of intentions can have different implications and are best avoided, such as;

• “Gone to heaven, gone to God” - children may think they can also follow or visit.

• “Gone to sleep” - can give children the fear that they too may not wake up and they may be afraid to go to sleep.

• “We have lost your sister/brother” - can leave a child searching in the hope of finding them again, like looking for a lost toy.

• “The doctor has taken him/her away” - can leave children fearful of visiting a doctor again.

Each child will have their own way of expressing their grief and their individual feelings should be accepted, even though perhaps painful to hear.

Some children may not speak about their feelings and by ‘holding back’ they can appear unaffected, but this will not be the case and it is helpful to include them in discussions, ceremonies and events, such as the funeral, as far as possible. Exclusion could leave them feeling anxious, bewildered and alone.

Many children worry that they may have been responsible for the death because of any negative or jealous feelings they may have felt towards the baby, and may feel guilty.

Ways to help children

• Talk to your children in a way they can understand. Remember to listen to the children and try to understand what they are saying.

• Repeated questions need patient listening.

• Encourage them to ask questions and give honest answers.

• Encourage your children to talk and express their feelings, share with them how you feel about the death.

• Share tearful times.

• Be patient with children when they are angry. It is normal to be angry.

• Share remembrances of the baby by looking at photographs and remembering events. Put together a memory book or box.

• Involve your children in what is happening. Their imaginings, if they are not given accurate information, could leave them frightened.

• Maintain usual routines as much as possible, bed times, story times, playtimes, walks and meals.

• Talk to their playgroup leader or school teacher and explain what has happened.

• Try to be loving, accepting, truthful and consistent.

While family members may not always know how to be helpful, bereaved parents often mention their valuable support. Practical help with the other children or with daily activities is usually welcome. Many parents say they were grateful to have family who were there to listen.

Please call FSID’s helpline 020 7233 2090 if you are bereaved and need support.