Death of a baby

Miscarriage, stillbirth or neonatal death (death of a newborn infant) can be a shattering event for parents, their families and their community. Everyone experiences and expresses their grief in different ways.

Reactions to the death of a baby

Grief can impact on all aspects of your wellbeing. It can affect your emotional, social, physical, spiritual and mental wellbeing.

Some common grief reactions include:

• Shock and disbelief – many people report feeling numb and empty when they learn their baby has died. Common grief reactions include shock, physical pain, and feelings of loss, anger, sadness and guilt.
• Guilt, anger and blame – are all normal reactions. For example, parents worry that something they did or didn’t do during the pregnancy caused the baby’s death.
• Isolation – friends and relatives may not know how to handle the situation and choose to avoid the grieving parents and their families. Or they may lend support for a month or two before leaving them to cope alone. Sometimes they don’t know what to say and can say the wrong thing unintentionally.
• Family conflict – people may grieve in different, and sometimes conflicting, ways. Parents may notice behavioural changes in their other children, or impacts on other family members such as grandparents. Men and women may cope and express their feelings very differently, which can cause friction between couples. However, contrary to popular belief, most couples stay together after the death of a baby.
• Lack of acknowledgment of loss – sometimes those around bereaved parents think that the best way to support them is by pretending the loss never happened. For bereaved parents, if the loss is not recognised or acknowledged, they may feel very unsupported.

Miscarriage

Losing a baby by miscarriage can be particularly isolating. If the baby dies during the first trimester, it is possible that most people didn’t even know you were expecting a baby. In such cases a miscarriage can go unrecognised by others.

Other difficulties include:

• The suddenness of the miscarriage – there is often nothing that can be done to prevent a miscarriage. With the miscarriage comes the loss of hopes and dreams those parents had for their family unit.
• Lack of ritual – people who experience a miscarriage don’t have the opportunity to express their grief through rituals such as a funeral and burial.
• Understanding – often there is no medical explanation for a miscarriage. This can leave parents feeling a range of emotions including guilt, anxiety and fear of having another miscarriage.
• Lack of community understanding – members of the community often don’t realise the extent of the loss felt by parents when they experience a miscarriage, which can lead to parents having to hear insensitive comments and invasive questions.

Stillbirth and neonatal death (including Termination for Medical Reasons or TFMR)

A neonatal death is when a baby dies during the first 28 days of life.

A stillbirth is classified as a pregnancy that ended after 20 weeks or more, or of a birthweight of 400 grams or more.

A Termination for Medical Reasons (TFMR) is when a pregnancy is ended due to the health of the unborn baby or that of the mother.

Families who have experienced a stillbirth or neonatal death often express disbelief, shock and report not knowing that this was a possibility.

Other difficulties include:

• lack of understanding how or what caused the stillbirth
• feelings of guilt or self blame that somehow they were responsible for the baby’s death
• if a TFMR was required, feelings that they made the decision for their baby to die
• other people’s lack of understanding about stillbirth and neonatal death, and the stigma often surrounding terminations.

Sudden unexpected death in infants (SUDI)

SUDI, including sudden infant death syndrome (SIDS) and fatal sleeping accidents, is the sudden and unexpected death of a baby.

Concerns for grieving parents and families include:

• never knowing what caused their baby to die
• feeling guilt or self-blame that somehow they were responsible for the baby’s death
• the distress caused by police and coronial involvement
• the autopsy of their baby
• other people’s lack of understanding about SUDI. This may lead to parents not receiving support and even being blamed for the death of their child.

Coping with the death of a baby in the long term

In the months and years ahead, parents may experience painful reminders from expected and unexpected sources, including:

• the pregnancies and newborn babies of friends and relatives
• packing away items bought for the baby (such as a cot, pram and clothes) to be stored or given away
• special dates – such as the child’s birthday, estimated due date or anniversary of their death
• family occasions – such as Christmas, Mother’s Day or Father’s Day
• when their child was due to reach certain milestones, such as crawling, walking and talking
• dealing with well-meaning questions such as ‘how many children do you have?’ or ‘was it a girl or a boy?’ when meeting acquaintances who don’t know the baby has died.

They may also find themselves:

• being excessively vigilant or protective over other children
• feeling anxiety and fear during subsequent pregnancies or when subsequent babies are asleep or sick
• not receiving the acknowledgement or support they would expect from their inner circle and wider community.

Suggestions for grieving parents

Suggestions include:

• Consider asking your health care provider to refer you to Red Nose Hospital to Home program. This program operates throughout Australia, providing outreach support within 3 months of loss to bereaved parents who have experienced the death of a baby or infant through stillbirth (including TFMR), neonatal death or the sudden unexpected death of an infant (SUDI).
• Find ways to continue an ongoing connection with your child. This may include creating ongoing rituals, acknowledging birthdays, death days and other significant milestone events. This will allow for healing and help your baby remain part of your life.
• Take your time with the difficult task of packing or giving away the items bought for the baby. Dealing with the physical reminders of your expectations and hopes is an important and often painful part of grieving.
• Talk to your doctor and other healthcare professionals about the cause of your baby’s death. Reassure yourself that it wasn’t your fault.
• Contact bereavement services or self-help groups such as Red Nose for information, advice and support.
• Seek counselling.
• Remember that grief is an individual experience and different people grieve in different ways. If your significant relationships are suffering, seek counselling together.
• Get in touch with other bereaved parents. Organisations such as Red Nose have trained parent supporters and offer peer support groups.

Subsequent pregnancies after the death of a baby

Many parents who experience a miscarriage, stillbirth (including TFMR) or neonatal death choose to try again for a child. However, pregnancy and new parenthood can be an anxious and bewildering time until the health and survival of the new baby feels more certain.

Some reactions include:

• emotionally reliving the death of your child
• feeling that conceiving another child will ‘betray’ the child who has died
• anxiety that the next baby will also die
• lack of confidence in yourself as a competent parent because you couldn’t prevent the death of your baby.

Suggestions for subsequent pregnancies

Suggestions for any further pregnancies include:

• If your baby died from a genetic disorder, try to find out as much as you can about the disorder and seek genetic counselling.
• If you are pregnant again, starting a pregnancy diary may help you work through your thoughts and feelings, both positive and negative.
• Tell your doctor and other healthcare professionals about your feelings. Ask for and expect sensitive emotional support during subsequent pregnancies.
• Join an in-person or online support group focusing on pregnancy after loss, such as those offered by Red Nose.
• Access safer pregnancy information through Red Nose to help understand what you can do to keep you and your baby safe throughout pregnancy.

Where to get help

• Your GP (doctor)
• Red Nose 24-hour Bereavement Support Line Tel. 1300 308 307
• Red Nose Australia’s Guiding Light (Red Nose Grief and Loss bereavement support website)
• National Association for Loss and Grief (NSW) (NALAG) Tel. (03) 9329 4003 or 1800 100 023 – for referral to an accredited grief counsellor
• Post and Antenatal Depression Association (PANDA) Tel. 1300 726 306
• Grief Australia Tel. (03) 9265 2100 or 1800 642 066
• Griefline Helpline Tel. 1300 845 745 – for grief counselling and support groups