When a Baby Dies – Information for parents, family and friends.

First published in 2006 by Tommy’s, the baby charity
This updated edition published Sept 2008
© Tommy’s, the baby charity

Introduction

The loss of a baby at any time is one of the most devastating and personally unique experiences any individual can go through.

‘It’s the worst thing that could ever happen.’

This has been written to inform and help parents and their families whose baby has died before, during or soon after birth. This tragedy is particularly deeply felt because it comes at a time when new life and joy are anticipated. It never occurs to most pregnant women that their baby may die. We see our babies actively moving on a screen when we have our ultrasound scans; we feel the vigorous kicking under our ribs; we know our unborn baby can hear our voice; we know childbirth has never been safer; we know very premature babies can survive because of amazing advances in medicine – it just is not something that we consider.

‘He will always be a part of the family, however short his life was.’

Everyone will react and grieve in different ways. Some of what you read may not apply to you, or may not be relevant to the stage of your grief.

‘She was my child – my child had died.’

Technically, a stillbirth is the death of a baby after 24 weeks of pregnancy but before birth. Around 3,000 babies are stillborn in the UK each year. Rates have been falling since 1995.

The stillbirth rate is much higher in multiple pregnancies; about 20 babies in every 1,000 births. Therefore stillbirth is actually not as uncommon as you may first have thought. It is actually five times more common than cot death (also known as sudden infant death syndrome).

‘He looked perfect – I kept checking for breathing, I just couldn’t believe it.’

Unfortunately, the cause of about 70 per cent of the deaths is uncertain. They are probably due to a combination of the known causes of stillbirth including congenital abnormalities, ante-partum haemorrhage, prematurity, maternal disease, pre-eclampsia, birth trauma, infections and  immunological disorders.

Coping physically

The first few days

In the days after the birth of your baby, you will have to cope with the deep grief and mixture of emotions as well as the physical aspects of the post-natal period.

Most women, however, will agree that the emotional pain is infinitely more difficult to bear than the physical discomfort. Remember that your hormone levels are rapidly changing after the birth, and mood swings and tears are normal after any delivery. Your midwife should still visit you at home to support you emotionally and help with physical symptoms.

Nature can be cruel and your breasts will fill with milk. Milk production can be suppressed by medication but many women decide not to take this. Breast engorgement can be painful, ask your midwife for advice.

The first few weeks

You will experience vaginal bleeding, possibly for several weeks after the birth, and possibly after-pains (like period pains), again a constant physical reminder of your tragic loss.

It is important to try to look after yourself physically after the birth. You may not feel like eating or drinking but you need to do so. It is important to get your general physical health back to normal – you will be able to cope with the emotional aspects better if you are physically stronger. Try to get a bit of exercise, perhaps a walk in the fresh air.

Many women felt it was very difficult to leave the house but if you can you will probably feel better.

The longer term

After any bereavement, loss of appetite and weight loss is not unusual, however, if it is excessive do talk to your GP (also see the section on seeking help). It may take you longer to recover from the birth than would be expected. You may be prone to lots of viral infections such as colds. You may feel physically exhausted. Sleep may be difficult for a while. Make sure you attend your six-week post-natal check.

Often parents are frightened by the intensity of their physical experiences – you may feel, hear or see something you cannot explain. Talking things through with someone who has lost a baby themselves can be helpful – making you feel less isolated.

‘My body physically ached for my baby.’

Finally, it is not an unusual phenomenon for bereaved parents, particularly mothers, to become obsessed with their own, their partner’s or their other children’s health. Every symptom becomes blown out of all proportion. Your own   mortality comes to the fore – if a tiny baby can die so can anyone. Again, this reaction usually fades with time – if it does not, talk to your doctor or health visitor.

Parents and their feelings

Recognising your baby as a real person is important. Take time to create memories and acknowledge your baby’s existence in the world. (See page 9). The grieving process takes much longer than we, as a society, anticipate. Anger and fury towards the hospital, family and friends is also very common.

Mothers

Many mothers said that in this situation they could not think straight and felt unable to make decisions. Very powerful maternal urges were common. Some were frightened by the intensity of these feelings. For example, some mothers wanted to dig up their baby’s body from the grave to cuddle them.

‘I felt I had abandoned her when we left the hospital.’

Some women felt they could not face going out, sometimes in case they had to explain to an acquaintance where their baby was. As the grieving process goes on your emotions may change dramatically day-to-day or even hour-to-hour. Many experience a feeling of failure – how could they have let a tiny baby die?

Many mothers cannot face the idea of seeing others’ babies and experience intense jealousy of other mothers. Some felt brave enough to visit their antenatal group; this was often a distressing but positive experience. Other common emotions were guilt and self-blame because their body had let them down, particularly as the grief became less raw. For example, some mothers said that they felt they had let their baby down when they started crying less. All these feelings are perfectly normal.

‘It can take a long time to feel in charge of your emotions again.’

Most mothers felt that talking to other women who had also experienced stillbirths was very helpful and reassured them that their feelings were normal, and sometimes made them feel less alone.

Fathers

Fathers are often forgotten. Men and women grieve differently and many men take on the protector role in the family, supporting their wives or partners and not allowing time for their own grief. Even in today’s society, some men find it difficult to express their emotions and feelings can get locked up. Some women take this as indifference to the loss of their baby.

‘He would be home late from work and I realised that he was visiting the grave.’

Many men need time and space to grieve, and this may happen after the funeral, even many weeks later. Fathers tend to take on the practicalities and keep themselves busy. However, do allow yourself time to grieve.

‘He didn’t cry until the funeral and I felt very bitter about it. I felt he wasn’t acknowledging our baby.’

 

The effect on the family

Losing a baby will obviously affect the relationship between the two parents. Some couples find the tragedy brings them closer together; others pull apart and may find the loss puts a real strain on their relationship. The stress is better dealt with if you acknowledge the fact that everyone grieves in different ways – some parents may want to visit the grave every day, others may want to go back to work, some cannot get out of bed, some may cry all the time, some will want to spend days researching into stillbirth to find an answer and so on. All grieving parents have ‘good’ days and ‘bad’ days – try to be aware to help out the one that is having a bad day.

‘I knew he didn’t want to talk but we agreed that I would talk about it and he would listen.’

Many women find it difficult to understand their partner’s lack of tears and visible distress – they feel the baby did not mean anything to them. Remember a lack of expression of feelings does not equate to lack of feelings. Conversely, some women are disturbed by the emotional outburst of their partners, they may never have seen them cry or sob uncontrollably before.

It is usually the father who goes back to work first. This is often a difficult time for both of the couple. The mother may feel abandoned and feel that her partner has ‘moved on’ and forgotten about the baby. The father may feel he cannot cope yet with the extra stress of work but has to go back and he may resent the mother’s time to continue the grieving process. It is not unusual to have some sexual problems in the relationship in the first few months. Again everyone is different; one of the couple may have a strong desire to make love to comfort and show their love for the other one, who in turn may have no desire at all. Try to talk about how you feel. Bereavement is usually associated with a depressed feeling that often diminishes the libido for a while. It will return at different times for the couple.

Sex and pregnancy are inextricably linked. You may feel terrified at the thought of getting pregnant again; likewise sex may become very mechanical in the desire to fall pregnant as quickly as possible. Be aware of these possibilities, and be open and honest. Sex after any pregnancy, whatever the outcome, is different. A woman’s body changes and she will have to recover from the physical effects of the pregnancy and the delivery. If problems in the relationship persist past the first few months and appear not to be resolving, be they sexual or otherwise, do seek help. Some couples find a few sessions with a professional counsellor very helpful.

The effect on the children

‘I was worried about constantly crying in front of my daughter. I was afraid for her to see me sad.’

The loss of a baby will have an effect on everyone, including your existing children. In the first few weeks after the loss the practical involvement of a grandparent, aunt or close friend may be invaluable. Someone needs to keep the practical aspects of life under control, such as going shopping and cooking. Many friends will want to help, and will be glad to do something, so accept their help and ask if you need it.

What you tell your children again depends not only on their age but also on past experiences of death and any religious beliefs. Tell the child in very simple terms – if they want more details they will ask.

Children will often mull facts over and ask questions many weeks later, often in not ideal situations such as during dinner or in a shop. Answer them again honestly and openly. Do not be afraid to show your emotions, likewise let them cry.

Explaining the death in terms of ‘it was nobody’s fault’ is very important. Most children at some stage will blame themselves for the death of their baby brother or sister. Again reassure them and explain what a wonderful brother or sister they are because they are thinking about the baby or helping you put flowers on the grave or however they help you. Children sometimes hide their sadness to protect their parents. A recent study identified the three most important aids in dealing with children who have lost a sibling:

• Recognise and acknowledge the child’s grief.

• Include the child in family rituals.

• Keep the memory of the baby alive in the family.

Try to be as open and honest about the situation as you can be. Children are often much more disturbed when they sense something is wrong but don’t know what it is.

A special word for grandparents

As grandparents, you may often feel left out or excluded from the grief. This must obviously be a very difficult time for you – not only have you lost your grandchild but you see your own child suffering. Your support to your son or daughter will be invaluable.

Try to visit them in hospital and ask the parents if they are happy for you to see your grandchild. You may like to cuddle him and spend some time sharing him as a family. This will be invaluable later as you have a shared memory to treasure. You may be surprised about how things have changed over the years. We have learnt that it is best to acknowledge the existence of stillborn babies and help parents to spend time with their babies as well as creating memories by taking photographs or footprints.

How can friends and family help?

If you are reading this to find out how you can help a friend or family member who’s just lost a baby, the most crucial piece of advice is to acknowledge the loss and ask how you can help.

‘Everyone will grieve in a different way. The worst thing you can do is to ignore it.’

Some families will want to be on their own, others may want to keep busy – you have to find out exactly what is needed of you.

People often say they don’t know what to say. It’s better to say, ‘I just don’t know what to say,’ than nothing at all.

‘Ask if you can see any photographs of the baby. This will acknowledge the baby’s existence

– say something positive, such as what beautiful hair she had.’

Remember that there are two grieving parents. Fathers are often forgotten and feel they have to be strong for the mother. Cards, flowers and letters are all very helpful. Many parents keep all correspondence in a memory book – your card will probably be read hundreds of times and will be treasured as part of the memory of their baby.

Many women say they want to go through the events of the birth and the short time they had with their baby over and over again in minute detail.

Listening may well be your most valuable gift. Talk about the baby and use his or her name, this will mean a lot to the parents.

Never push someone into getting back ‘to normal’. Do not worry if they break down in front of their other young children – you can perhaps give their other children a cuddle. The loss of a baby is a bereavement and often it takes months or even years to get over the initial shock.

Stillbirth is often overlooked by society; bereaved parents can often need their friends and family to validate their baby.

Never say ‘at least you can have another baby’ or ‘at least you have other children’ – no baby is replaceable and this can be extremely upsetting. Likewise the old adage ‘time heals’ is often not the most appropriate thing to say. However, if you do put your foot in it, remember it is still better than keeping away and not acknowledging the loss.

‘I never received as much as a card from my antenatal group, and that really hurt.’

Finally, many women really appreciate friends and family when they are sensitive to anniversaries. Important anniversaries may be the date of the birth, the baby’s due date and the funeral. The first anniversary is often the most difficult and a card or phone call around these dates would be a very generous gesture. In fact many parents say it is the weeks leading up to these dates that are the most difficult to deal with rather than the date itself. Christmas, and other times when, traditionally, families are together, can also be difficult.

Creating memories

There can be so little when a baby dies – here are some suggestions to help you create memories and indeed continue to do so as the years pass.

Obviously the first few days are crucial for gathering moments and memories.

Spend as much time with your baby as you want. You can often visit your baby after leaving hospital. Some families may wish to take their baby home with them for a day or so.

‘Memories are all you have.’

It is natural to spend time talking, touching, cuddling and comforting your baby. Being together as a family is often very important. You may want to include other family members or close friends.

You can dress, wash or undress your baby as you wish. Some mothers wish they had undressed their babies to look at their bodies. You may like to keep the clothes your baby wore.

‘You have to pack a lifetime’s loving into a few days.’

Take as many photographs as you wish. You may like some photographs of the baby being cuddled by you and different family members. Don’t be afraid of taking close up shots.

Take a lock, or several, of your baby’s hair. The hospital will also make hand, foot and ear prints if you wish. Keep hospital nametags and other items and keep them in a special memory box.

Keep letters and cards. You may wish to press the flowers you receive.

‘I have the album in my living room with my other family albums.’

Many families find it helpful to write about their experiences. Try writing a diary or a letter to your baby. It is never too late to start creating memories.

Seeking help

If you feel you are unable to cope with your loss, and as the weeks and months go by there is no lift in your mood, please seek help. Firstly, you may find it very helpful to speak to other parents who have been through a similar loss. This is something that we would recommend everyone considers. Many parents find it a very positive experience and often lifelong friendships are made. SANDS are an excellent organisation for giving you contact names. Your midwife will also be able to help.

‘The best counselling was talking to other parents.’

It is natural to feel overwhelmed and to have a sense of hopelessness after experiencing a bereavement, this can be part of the grieving process and often no medical intervention is necessary.

However, if this deepens and persists it may become a clinical depression. Please seek help through your midwife or general practitioner. You may need treatment with possibly counseling and/or anti- depressants. Talking can help to take the isolation out of grief. If you do not receive the help the first time you seek it, ask again. Seeking help can be important in helping to lessen the intensity of your feelings. It can take more than a few phone calls to get the help you want. If you want, get your partner or a friend to accompany you. There are many things that can help so please do get assistance.

‘My counsellor helped me to come to terms with things I couldn’t cope with – like seeing newborn babies.’

Helpful contacts

There are many excellent organisations to help you. If you find that one does not give you the help that you need, contact another one. Remember everyone is an individual and will respond to different help and advice.

About Tommy’s

At Tommy’s, we believe it is unacceptable that one in four women will lose a baby during pregnancy or birth.

We want to give every baby the best chance of being born healthy, so we work to fund medical research into the causes of premature birth, stillbirth and miscarriage, and provide a free information service that educates all parents-to-be about health in pregnancy.

Our information service is informed by our medical research and includes a telephone midwife service, a comprehensive website and free books and leaflets promoting health in pregnancy.

By 2030 we want to halve the number of babies who die during pregnancy or birth. If you have any questions about pregnancy you can speak to a Tommy’s midwife by emailing info@tommys.org or visit our w

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