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Hope—a resource booklet for bereaved parents

Hope is not the absence of pain but the belief in the possibility of joy’s return. The pain of grief can coexist with hope and joy; one does not leave to make room for the other. Tanya Lord.

Mater Mothers’ Hospital Perinatal Loss Support Program

We offer our sincere condolences to you and your family at this very sad time and hope that in some small way, this booklet can assist you and those you love as you mourn the loss of your baby or babies.

Mater Mothers’ Hospital Perinatal Loss Support Program provides care and support to families following the death of their baby.

We acknowledge that your loss is a truly devastating experience for yourselves and your families. You may be feeling confused, angry and profoundly sad. We can offer you the expertise of doctors and bereavement midwives, as well as pastoral care workers and social workers to assist you withthe emotional,  psychological, spiritual and practical needs that will arise.

Contact details

While in hospital ask your midwife to contact us to arrange a visit.

Once you have left hospital contact us by calling:
07 3163 3467 or 07 3163 6621 or via mobile phone 0414 828 742.

After hours and weekends contact the hospital switchboard.
Phone: 07 3163 8111 and you will be put in contact with our after-hours social worker or pastoral care staff, who can provide assistance for urgent matters.

What happens after your baby dies

The loss of a baby can leave you feeling numb, exhausted and in complete shock. It can feel as though you are on “auto-pilot” doing what people suggest you should, but often you may be unable to fully take in everything that is going
on around you.

Although it can be distressing to see your baby, it can be a very healing experience for you and your family to spend time seeing and holding them. It is important for you to feel comfortable to spend as much time as you need to with your child. If you would like to bath and dress your baby please let your midwife know and this can be arranged. This time spent caring for your baby is often a sad, but very important opportunity for parents, and one which becomes a treasured memory in the years ahead. You may wish to dress your baby in their own special clothes; otherwise the hospital can provide clothing for your baby.

Creating memories of your baby

We encourage our families that have experienced a loss to collect as many memory keepsakes of their baby as possible. Photos, hand and foot castings/ prints and collecting a lock of hair are just some ways to create precious memories. These will help you in your grief journey and become very precious and a source of comfort as time passes. If you can’t face having these immediately, they can usually be kept with the bereavement team at Mater Mothers’ Hospital so that they are there if you change your mind in the future.

There are many other ways that you can create memories of your baby. Do not in any way feel pressured to do anything that does not feel comfortable for you. In saying this however, parents often find that once they have had contact with their baby, the fear is replaced by an overwhelming feeling of love for their child, and being with, holding them, or attending to other tasks becomes a very natural experience.

Over time memories can fade and the events surrounding your baby can become hazy, so spend as much time as you need with your baby. If possible, spend time with your baby as a couple/family. You should not be hurried to
say goodbye to your baby before you are ready. You will know when the time has come. If you have other children they too may be involved if you feel it is appropriate for them. Sharing the grief and the feeling of being a family may
ease the pain and isolation a little.

Care of your baby in hospital

Your baby will be kept in the baby specific hospital mortuary until the funeral arrangements have been made. Some parents do not wish to see their baby again after the death. If this is the case, no one should force them to do
so. Other times, parents will want to see and hold their baby again, some a number of times. Parents may be afraid of what others will think but it is important to base your decision off what feels right for you.

You can spend as much or as little time with your baby as you wish, allowing members of your family to do the same at your discretion. Each individual will vary in his or her need to say goodbye. If you decide to leave hospital within a day or so after the birth, you can return to see your baby again while he or she is still in the mortuary. Check with the staff before you leave to work out how you can arrange this if you need. If you have consented to an examination of your baby being carried out, your baby will remain at the hospital during this time. 

Examination of your baby

Finding a reason to explain the death of your baby can be very important for some families. There are various levels of investigation that can be carried out. An external examination of the baby’s body can be done by a specialised pathologist who will carefully and respectfully examine the baby’s body, take measurements and clearly document any findings. This examination can be enhanced further by taking X-rays or scans of the baby. A more comprehensive examination of the baby can be done by carrying out an autopsy (sometimes also called a postmortem). This involves a careful examination of the baby externally and internally.

There are only a few instances when the law would require an autopsy on a baby who has died soon after birth. These include when the baby has died while under anaesthetic during a medical or surgical procedure, if there were any unusual circumstances surrounding the death, or when a medical practitioner has been unable to sign a death certificate. If the doctor is unsure as to the cause of death, it is likely that hospital staff will approach you seeking permission for an autopsy to be performed. However, it is still important to remember that it is ultimately your decision to make.

Medical authorities recommend an autopsy for a number of reasons.

• It may provide answers to the specific cause of death, if not obvious.
• At times what appears to be the cause of death may actually mask the real cause, e.g. death may have been due to a malformed heart, not the cord around the baby’s neck.
• There can be identification of any genetic or developmental problems. This information can be vital in counselling parents about future pregnancies.
• More can be learned about understanding various conditions that may contribute better outcomes in the future.

Although doctors often prefer a full autopsy, a limited or partial autopsy may also be an option. For example, if your baby died from breathing difficulties with no sign of haemorrhage in the brain, you may request an autopsy involving the chest only.

Incisions are made in such a way that after they are surgically repaired they should not be obvious under the baby’s clothing. If you wish to know more about the actual procedure, discuss this with the doctor or bereavement midwife. It is still possible to see your baby after the autopsy, and it may be possible to hold them also, but it is best to discuss this with the Funeral Director, medical staff or other support staff at the hospital.

A preliminary report from the autopsy is usually available from your doctor within a week or so. Some other more involved tests may take much longer, so it is important to discuss this with the doctor or bereavement midwife so that you are aware of what length of time is likely to be involved. Often the results are available at the time of the mother’s six-week postnatal check-up.

Care of your baby after leaving hospital

You will need to make contact with a funeral company soon after you leave the hospital. If you have never had to deal with a funeral director before, your bereavement midwives can offer some advice to help you make this decision. The appropriate forms will be given to the funeral company by the hospital before they can take responsibility of your baby. At the funeral home your baby’s body will be dressed and arranged in the casket chosen by you. It may be possible for you to do this yourself, but discuss this with your Funeral Director.

Due to various cultural reasons some families may choose to take their baby home with them to have more personal time with their baby. When they are ready, the funeral director will collect the baby from their home. Discuss this with your bereavement midwife if this is something you would like to do.

You can be reassured that your baby will be treated with gentleness and respect. Many of the midwives, mortuary staff, pathologists and funeral directors are parents themselves, and all are deeply touched by the death of a child.

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Your baby’s belongings

Some parents’ initial reaction after losing their baby is to give away all of their belongings. The nursery furniture, the clothes and the toys can all trigger intense grief and sadness. This is a very normal reaction, however your baby’s belongings are often the most tangible link to your beloved baby, and you may change your mind about giving them away in months to come when the grief is not as intense.

You could pack and store them at the home of a relative or friend for a few months before you make a final decision about what you wish to do with them ultimately.

It is something that you and you alone, must decide. Often well-intentioned partners or family members pack away the baby’s belongings when one or both parents are not there. If this is what you have requested, that is fine.

Unfortunately, it is often done without a parent’s permission and before a parent is ready to have this occur. Many couples pack away their baby’s belongings together. Although finding this difficult, many such parents find the sharing of this experience brings them closer in their grief.

Registering the birth of your baby

In most Australian states it is a legal requirement to register the birth of a baby that is either live or stillborn, over twenty weeks in gestation, or who weighs more than 400 grams. The hospital staff will help you with this information. If your baby is born before twenty weeks or weighs less than 400 grams there is no legal requirement for a funeral service, burial or cremation. Therefore, arrangements for the baby’s final resting place becomes a personal choice. Parents should be aware of the range of options available to them.

Arrangements for your baby’s final resting place

After you have experienced the loss of a baby, it is not unusual to initially feel a sense of unreality or numbness, as if you are walking around in a fog. Add to this the fact that most young people have not had to deal with funeral homes
or crematoriums before in their lives, and it’s not surprising that the thought of having to make decisions regarding the final resting place of your baby can be a daunting one.

What are the alternatives?

You may choose to have your baby’s body buried or cremated. This is a personal choice and one you should feel comfortable making. Is it also your decision as to whether you have a funeral service or private ritual to say goodbye. Most families feel some type of ritual helps them in their grief, and gives them a chance to say goodbye to their baby the way they want to. This can be particularly helpful for other children in the family, who may not be old enough to fully comprehend the meaning of death, but are aware that their hoped for brother or sister is not coming home. Some families will feel that this time is a deeply private one, and only want to have a few close family members or friends attend; other families will value the support and comfort offered by a larger gathering of people. The decision is a personal one, and important to talk about. If you choose not to have a funeral service, the Funeral Director will assist you to organise a private burial or cremation. If you choose not to attend the burial or cremation at all, the Funeral Director can make the necessary arrangements for you. A decision not to attend is one that should be made carefully, and made by each individual without pressure from others.

No one should prevent another from attending, or having a burial or cremation. For example, a father, whose partner is still in hospital after a caesarean section or natural delivery, should not make the arrangements to have a baby buried or cremated without the mother’s consent.

How do I organise the funeral?

The bereavement midwives or social workers will generally discuss with you the need for making arrangements for your baby’s final resting place and your options according to how it can be arranged. Often this will be your first encounter with death and funeral arrangements and this may concern you. As long as you select a reputable funeral director, he or she will handle all the details for you, or allow you as much involvement with arrangements as you wish. Hospital staff will provide you with the names of funeral directors who regularly make arrangements for the burial or cremation of infants.

Contact with your baby

Generally, only one or two people will handle your baby’s body and prepare them for the funeral. These people are often parents themselves, and you can be reassured that they will treat your baby with respect. Sometimes it may ease
your mind to actually meet the staff involved. Once your baby’s body has been prepared, then you have the option to arrange a time for you and any others who wish to see your baby at the funeral home. This is known as a viewing, and is a personal choice usually based on your past family traditions and experiences. If you have some special mementos that you would like to place in the coffin with your baby, this is quite acceptable too. If you have other children, they may wish to place something, such as a toy or drawing, with their baby brother or sister. Alternatively, you may be able to be involved in dressing your baby yourself. If you wish to do this, let the funeral director know this at the first meeting.

Planning the service

You can participate in the funeral as much or as little as you wish. There is no need for it to be hastily organised. It is best to wait until the mother is feeling physically well enough to attend. Some families feel that the sooner the funeral
is over the sooner the pain stops. Sadly, this is not the truth. Funerals are often emotionally distressing, yet many parents acknowledge the importance of such rituals in assisting them in the healing process of mourning. Such services can provide you with the chance to do something personal and special for your child in your own way, and provides an opportunity to honour and respect your child. It also gives others who care about you, the chance to show their concern. The funeral may provide a special memory of your baby that will remain long after the hurt has eased.

How much does it cost?

Most Funeral Directors feel uncomfortable about discussing costs with grieving parents but, as with any business, it is a necessity. If the baby is to be buried, the greatest expense likely to be incurred, particularly for city dwellers, is the
purchasing of a burial plot. This cost may or may not include a basic plaque to be placed at the site. A burial plot is usually able to accommodate three coffins. Therefore, it may be used by the family in the future. Crematorium fees are generally less. This fee generally does not include a memorial plaque or flower bush, which would be an additional cost.

Besides the choice of burial or cremation, factors that affect the cost of a funeral include whether or not you attend the funeral, whether you wish to include a service at a venue different to the actual place of burial or cremation; the type of coffin you select; whether or not you advertise the details of the funeral; whether clergy or a celebrant is used and the amount of other extras such as cars and flowers you wish to have. Hence the cost can vary from a few hundred dollars to well over $1,000.

Help with the cost

If you have difficulty finding the necessary amount for payment, discuss with a social worker or Funeral Director other options you may have. For all registerable births you may be eligible to receive some financial assistance through Centrelink—ask to speak to the hospital social worker who can provide more information about this. Those in private health insurance schemes may find they are entitled to some part payment for the cost of a funeral.

What is grief?

Grief is a normal natural reaction to the loss of someone or something important to us. In this case it is the loss through death or miscarriage of a child that was hoped for. Throughout the pregnancy, you and your partner have more than
likely experienced a developing bond with your baby, and have had some strong feelings of excitement and hope, as well as dreams, for the future. As the pregnancy continued, the relationship with, and attachment to your baby is likely
to have strengthened, as you became more aware of the signs of growing life, particularly at times such as when you heard your baby’s heartbeat, saw images on the ultrasound or felt your baby move.

During your baby’s short life, your love, in the form of a strong emotional bond is likely to have grown. When a baby dies, it feels as though these have been lost. Over time, however, this special bond with your baby will continue, but in a changed way that recognises your baby will not be with you in a physical way in this lifetime, but will always be an important part of you and your family life. In this way hopefully you will be able to eventually move on in your life, without ever forgetting this child. This slow process is often referred to as ‘mourning’ and it can take a long time. There is no ‘right’ length of time to mourn, it is an individual journey.

Grief is a bit like a wave as it rolls in. Initially it crashes down with incredible force, taking all in its path with it.  As it rolls towards the shore, it is still obvious, but its power is diminished, until it becomes just part of the water again. So it is with grief. Initially, its power can be frightening and overwhelming. It upsets the whole balance of life because it can affect people in a variety of ways; physically, emotionally, how you think about the world and the people in it, spiritually and socially. With time, its power to cause pain will ease somewhat, and the grieving parent finds they are gradually better able to cope.

What you are experiencing during these early hours and days after after the loss of your baby is the frightening, raw power of grief.

What will grief be like?

Shock

• numbness, disbelief, denial ‘This isn’t happening’
• the reality of the death or miscarriage hasn’t hit home
• allows you to keep functioning to some extent
• can last a few seconds, a few hours or days
• sense of unreality as if you are watching another person carry on with life
• feels as though you are in a dream.

Anguish

• the reality hits home
• devastation, incapacitation or profound sadness
• not able to think of anything else but your baby
• may fear you are going crazy
• inability to concentrate
• the emotional pain can seem overwhelming
• uncontrollable tears or sobbing
• physical symptoms such as heart palpitations, dizziness, stomach pains, aching arms and breasts, loss of strength
• inability to sleep or bad dreams
• hallucinations, such as hearing your baby crying or feeling movements are not uncommon.

Suffering

• usually the longest phase
• intense anguish gradually turns into a deep sadness that makes doing anything an effort
• intense longing for what might have been
• feelings of loneliness, and that no-one really understands you
• symptoms such as sleeping and eating problems, repetitious dreams, poor sex drive, tiredness and irritability
• loss of interest in work, appearance, friends, partner and other children
• self-doubt and questioning of everything you have valued or held dear
• bouts of tears or feelings of anger and rage
• initially some ‘highs’ but mainly ‘lows.’ This changes over time so that there are more good times and the bad times don’t seem to be as intense
• time of learning to adjust to life without your baby.

Recovery

• little by little you notice that you are feeling more like your old self, and you feel part of the world again
• your baby is never forgotten but his or her death has become part of you, and integrated into your life experiences. It still has the power to hurt you but it is no longer the prime focus of your thoughts and actions
• thinking about your baby doesn’t cause you as much pain, rather, memories are comforting now
• you are able to move on in your life with some enthusiasm and perhaps some new understandings.

Can grief be stalled?

Some people find that their grief doesn’t ease over time, that it still affects them seriously, even years later. This is usually because people have become ‘stalled’ in their grief, maybe because of an unresolved issue or a lack of support. If you find your grief is still a central part of your life for what seems like an unusually long time, perhaps it would be helpful for you to seek out some support from a professional counsellor or support group who have experience in assisting bereaved families. Speak with the bereavement midwives about this and they can direct you to the
appropriate support network.

Can I do anything to make my grief easier to deal with?

There is nothing you can do to save yourself from experiencing grief, because grief, although unpleasant, is normal and part of the healing process. However, there are some things you can do which can help to ensure that you don’t get ‘stuck in your grief, eventually the memories of your baby will be comforting rather than painful ones.

Do	Don't
Express your feelings and needs	Feel pressured by others to “put it behind you” and “get on with life”
Spend as much time with your baby as you need	Express only the positive thoughts and let the negative thoughts and feelings eat away at you
Remember that your partner, your children, your family and friends may all react differently to the death or miscarriage	Feel embarrassed or afraid to ask questions about your baby’s death or the miscarriage and effects on future health, pregnancies or other children
Make sure there is at least one person who you feel you can be completely honest with	Be afraid or feel ashamed to seek help if you feel it is all getting too much for you. Your doctor, the midwives or the social worker should be able to suggest assistance if you can’t find it among family and friends
Seek out the information you feel you want about your baby’s death or the miscarriage	Forget that you are valuable and your baby was real and special
Be as gentle with yourself as you would be if you had experienced a serious physical injury	Expect too much too soon. Grief is a long, slow process. If you face the pain and work on processing the loss it will ease more quickly
Listen to your partner when he or she expresses feelings, thoughts and needs	Compare your reactions to those of others, even your partners. Each individual is different and his/her particular reactions to a death or miscarriage are acceptable.
Do not be frightened by thoughts and feelings that you have never experienced before, you are not going mad
Allow yourself time and permission to grieve
Accept the grief reactions of others as resonable for them.

The different ways people grieve

Mums, dads, grandparents, and in fact all people, grieve in many different ways. From how much they wish to discuss the baby, to how, and to whom, they direct their anger. Many mothers often feel the need to concentrate on and deal with their emotions for quite a while before they are really ready to get on with life. This may be difficult for many fathers to cope with if their way of coping is to get things ‘back to normal’ as quickly as possible.

What each parent sees as their role

Many partners do see their role as the provider and protector of their family. Some will even suppress their grief as they try to support their family during this time. If they are the primary income provider, many partners feel they must keep functioning efficiently and therefore put their sadness aside at least for a while.

Mothers who see themselves as nurturers may feel they have failed in their chosen role as a mother. There are a couple of small ways that you can let your partner know you care and understand them.

• Listen—Be prepared to listen to your partner if he or she wants to discuss their thoughts or feelings. Even if you don’t want to share yourself, listening can be just as important. Don’t assume you know what he or she is going to say or how he or she feels.
• Don’t expect your partner to be a mind reader—Too often people assume that their partner knows what they need and what they are thinking. They then get angry when their partner fails to respond as they would expect. Your partner can’t read your mind, particularly when you are both so emotionally distressed. You must tell them how you feel and what you need. ‘I’m not trying to avoid you but I do need a little time alone to sort through my feelings’ is better than simply saying ‘I’m going out!’ and leaving a partner feeling that you don’t care.
• Provide support for as long as it is needed—Couples may not only grieve differently but also the time frame can look very different. One partner may move fairly rapidly towards accepting and integrating their loss while the other takes much longer. Keep supporting your partner, even if at times he or she is frustrating. Don’t expect too much from your partner or yourself too soon.
• Recognise that men and women sometimes grieve differently—It is important to remember the differences in the ways mothers and fathers may grieve. If you think these differences apply to your relationship, discuss them with each other.

Children and grief

It is difficult enough for adults to deal with the death of a baby or a miscarriage, but for children it can be very confusing. We know that children do grieve, although sometimes their grief can look very different from adult grief. Like adults, children may cry and become withdrawn. Yet, in the next minute, they may be off playing as if nothing has happened. This can be bewildering for adults who may interpret this as the child being unaffected by the death. This
is not the case. Play is an important way that children sort out their thoughts and feelings.

Children may show their grief through changes in their behaviour. Some children may become clingy, withdrawn or fearful. Others may become aggressive, active or refuse to go to childcare, preschool or school. The changes in behaviours may be a sign that they are grieving.

At the time of your loss, sometimes children can be overlooked by others or even sent away to be ‘entertained.’ Nevertheless, to deal with the loss of their baby sister or brother, children need information about what has happened in a way that is suited to their age and comprehension level, they need reassurance of their relationship
with their parents, and they need to feel secure. Unfortunately, children’s grief, and their behaviour, requires patience and understanding at a time when parents’ emotional strength is at its lowest ebb. Misunderstandings are not uncommon, but telling a child you are sorry for an unjustified outburst and that you love them can go a long way.

You and your children may find counselling is a good option, even if it is just for a short period of time, while you move through your own grieving process.

Behaviour changes may include:

• withdrawal from parents, friends and teachers
• fighting, hitting, irritability, argumentative, moodiness, temper tantrums and whinging and whining
• refusal to go to school, pre-school, childcare or day-care
• fear of being separated from parents
• going back to doing things you thought they had outgrown, such as bedwetting, baby talk or refusing to talk
• sleep disturbance or ‘bad dreams’
• appetite changes
• becoming fearful of many things, e.g. monsters
• loss of interest in things
• loss of concentration

What should you tell the children?

If the miscarriage or loss has occurred before you have shared the news of your pregnancy with your children, this time may be particularly difficult for you. You may want to deal with your sadness in private and not wish your other children to see you upset. If this is the case, you may decide there is little value in telling your other children now of the pregnancy and miscarriage or loss. However, children are very perceptive and very quickly figure out when something is wrong, therefore trying to keep up an appearance that appears normal, may be difficult.

Some parents may choose to explain in a simple way, the reason for their sadness. As parents, you know your children best and will be able to make the appropriate decision for your family. Most importantly children need to feel secure and that they are not responsible for something they do not understand and for any change in your behaviour or mood.

Pre-schoolers/young school age children

• will not realise death is permanent nor that it will happen to them
• often curious about the facts of the death and dead people
• feel sadness, but this may be short lived
• 'magical’ thinkers who may believe something they thought or did caused the baby to die
• see themselves and what they do as the centre of the world.

Adolescents

• have a more mature understanding of death, therefore recognises the irreversible nature of death
• may be troubled about his/her own death
• may hold fears for the future including death of parent/s
• may concern teenage girls that this could happen to them
• may have physical and psychological issues
• may hide feelings
• question religious beliefs
• may withdraw from family or peers
• grief may be made worse by the moodiness of adolescence.

What can help them?

• give them opportunities to express thoughts and feelings
• give them opportunities to be involved in funeral service
• provide them with some privacy without isolation
• be available
•  set appropriate limits
• allow yourself to have some time out from caring for younger siblings
• maintain contact with the school to inform teachers or support staff
• give simple explanations over and over again
• continue domestic consistency and routine
• provide reassurance, physical care and extra affection.

How can I deliver the news?

This is likely to be a painful experience for your children, and although you can’t prevent this pain, your love and reassurance will help them.

Ensure explanations are clear and tailored to suit the child’s age, understanding of death and their need for detail. Teenagers may need to be told separately, or provided additional information later away from
younger siblings.

Use the words ‘death’ or ‘dead’, rather than words like ‘lost’ or ‘asleep’ which can lead to children developing fears of ordinary events.

Take time to explain. Speak slowly and let the child take in what you have said. Pause at times to gauge the child’s reactions.

Let children share pictures and other mementoes of the baby.

Be guided by the child’s reactions and questions. Children’s play and drawings may also give you some indication of what they understand about what has happened. Be prepared to repeat your explanations and give more detail if, and as often as the child needs it. Their questions and the need to have the story retold can arise hours, days, weeks, even years later as the child thinks about the death and develops intellectually and emotionally.

Regularly check what the child has understood about what death is, what has happened to the baby’s body and what caused the baby’s death. Children often misinterpret what has been said or take things said out of context. Asking them questions about what you have said can help you check their understanding and correct any misconceptions.

Telling others about your baby’s death

At a time when you, as parents are so emotionally hurting, it is very difficult to tell others about what has happened. Employers, teachers and others may need to be informed fairly quickly for practical reasons. Sometimes they will not handle the situation as well as you may hope, and this can be an extra burden during this difficult time.

There are others you may wish to tell, but not immediately. Often other family and friends will inform these people for you. Don’t push yourself to do this until you feel ready.

Dealing with the reactions of others

People around you are often very uncomfortable after the loss of a baby or a miscarriage. They don’t know what to say and so often say things that although well meaning, can be hurtful. The abilities of different people to support you at this time will vary greatly. You may find yourself surprised with the caring support from some who you did not realise were so understanding. At the same time, you may be disappointed in what you feel is a lack of support by someone you expected more from.

Why do people say these things?

Following are a few points that may be helpful to consider as you deal with the reactions of others.

• People are mostly well-intentioned. The vast majority of people are upset for you and want to say or do something to make you feel better. Often they don’t know what to say, so they use old clichés or give advice, both of which are unlikely to comfort you. Try to remember when this happens that usually such people are well-intentioned.
• People’s abilities to support you will depend on their life experiences and relationship with you. Some people, through their own experiences, are comfortable dealing with loss and death, and are able to provide valued support. Others just can’t deal with it. They may avoid confronting the idea of death by avoiding you. Often the closer your relationship with someone in the past, the more likely they will be understanding of your needs and be able to support you. Unfortunately, this is not always the case and those nearest and dearest may be those least able to cope with your grief or their own grief.
• People will want to see you getting better. It is painful to watch someone you care about in such distress. Those close to you will generally be more comfortable as you seem to be getting better. Therefore many will try to
  force a solution on to you; ‘get busy’, ‘think of those less fortunate’, ‘don’t dwell on it’, ‘have another baby’. Some who have limited experience of grief may believe it is something that is over and done with, in a matter of a couple of weeks. They may then make you feel guilty for your sadness and withdraw their support after this time. Politely they may suggest you are feeling ‘sorry for yourself’.
• The lives of others will go on. Initially, you may receive a lot of support from those around you. Fortunately, some may continue to support you for as long as you need. But the lives of others will go on and soon some will begin to forget you are still grieving. This is usually just how life is, and not intended to hurt you.
• Some around you will need your guidance to cope with your loss. Many of those who care about you will need you to help them cope with the situation. Partners and children are often in this situation. Others may want to help but don’t know how. Asking for particular, practical or emotional support from them will give them some guidance and make them feel more comfortable.

How do you deal with the reaction of others?

• Look beyond the inappropriate comments to the good intentions of the person. Look beyond what they say—try to remember how they feel about you.
• If you disagree with something said, say so honestly but calmly. Replying in anger will allow people to convince themselves that you are being unreasonable, rather than them needing to consider what they say more carefully.
• If you want or need something, ask a trusted friend or family member. They will welcome the chance to do something for you because they are probably feeling extremely helpless.
• Remember lots of people who don’t know you well may give you advice or tell you about ‘someone they knew’. Be prepared for this and try to be patient. We have all made mistakes like this with others in the past. We are likely to make more mistakes in the future.
• Try to be assertive, not aggressive in helping others to understand your grief. There may be times when your feelings of loyalty to your baby that has passed will be so strong that you will feel urged to let others know that they have offended, misunderstood or hurt you. This is normal, but often if you lash out in anger, others will become defensive, and still not really understand you. Take a breath, think it through and find a way to calmly but firmly let them know what it is that is important to you, and how they can be more supportive in the future.

Coping with demands of normal life

Some of the most common symptoms experienced by bereaved parents are a lack of energy, a tiredness that won’t go away, or a lack of enthusiasm for doing anything.

Initially, your mind may be so preoccupied with constant thoughts of your baby, that it’s difficult to think about mundane things such as what to have for dinner or the washing, however, life continues around you. Parents may
also have to carry on with their work outside the home. If there are other children in the family, they need to be cared for. Families need to be fed, clothed, washed, shopping done and employment duties carried out. Things that used to be done so routinely and easily with little thought may now take a lot of effort and time, if they get done at all.
It is important now to decide what really needs doing and what can wait. Talking to your children and feeding them takes precedence over a dustfree house.

Many family members and friends who feel so helpless to relieve your distress would be happy to help out with some practical chores and will offer. Don’t be afraid to say yes, this may be their way of helping or dealing with grief of their own.

Lactation

It is normal for your breasts to produce milk after you have had a baby, and this still occurs even when your baby dies. This can be very distressing for mothers to experience the painful and sad reminder of what should have been. If your baby lived for a while before he or she died, your milk supply may be well established and your breasts will continue to produce milk for some time. Without breast stimulation either via a breast pump or breastfeeding, your breasts are likely to become full, hard, hot and very tender. This period of discomfort is worse in the first few days in any situation and should then improve over time.

Suggestions to help minimise your discomfort and avoid problems:

• Wear a firm fitting bra day and night from the beginning. A sport style bra works well as there are no underwire; they provide good support and are comfortable to wear at night.
• Use breast pads if necessary. Also, a loose patterned top is less likely to show any ‘wet spots’.
• Drink to your thirst—restricting fluids has no effect on reducing your milk supply.
•  Avoid hot water on your breasts and have mild showers.
• Cold compresses applied to your breasts as often as is necessary, will help ease any discomfort. Try using covered gel ice packs or a face washer dipped in a bowl of iced water. Remove when no longer cold.
• Don’t be afraid to express some milk to relieve your discomfort. Express manually or with a hand or electric breast pump; enough to relieve the discomfort, but not to empty your breasts. Reduce the frequency and length of expressing gradually. By removing less milk, less frequently your supply should decrease without causing you problems.
• Research has shown the practice of binding breasts is not that effective and may place undue pressure on the milk ducts leading to further problems e.g. mastitis.
• Simple analgesia e.g. paracetamol (Panadol) will help ease your discomfort.
• Medications to ‘dry up your milk’ may be prescribed. Please discuss the effects with your doctor or midwife.
• As an alternative, if you would like to donate your breast milk, speak to your bereavement midwives about this as an option.

The length of time it takes for your breasts to return to normal depends on your milk supply. If lactation has not been initiated or you have a limited or no milk supply, you may not need to express at all. If your milk supply has been initiated or you have a greater supply, you may find it can take two to three weeks for your supply to taper off. It is normal to be able to express a few drops of milk for weeks or months after suppressing lactation.

Blood loss

It is common to have some blood loss (lochia) after the birth of your baby. It can take a few weeks for this to subside. This can be difficult emotionally as it is a constant reminder of the loss of your baby.

Returning to work

There is no right time to return to work. For each person this will be different, depending on your circumstances and the type of work. Whatever you choose, just remember that you have been through a difficult time, and it is often a good idea to just go gently and to allow yourself some time without extra undue pressure.

Sometimes colleagues don’t know what to say and may, due to their own discomfort, behave as if nothing has happened. Other times you may be concerned about what to say when people are sympathetic, and how to
maintain some control over intense emotions. Having a plan for the first few days can help. This may include making sure managers, or close coworkers have been provided some information beforehand. How much you
tell them about your baby’s death or the miscarriage is a personal choice.

Often telling colleagues how you want them to act and support you helps them as much as it will help you. A sensitive colleague who can provide you some ‘space’ if you need it, or to have lunch with, can help you feel less vulnerable. Many work places provide staff support or counselling services for staff; you may need to find out how you can access such support if you want it.

Often when fathers/partners go back to work, they do not have their feelings of loss recognised. Often people incorrectly believe they did not know the baby and therefore the grieving process is not as complex. They may be asked, ‘How is your wife/partner?’ This can put extra pressure on a father who is already trying to ‘hold it all together’ for his partner and family.

Remember that work performance may suffer as you find it difficult to concentrate and you are more prone to make errors at this time. Don’t expect too much of yourself too soon, and hopefully your co-workers will do this also. You may find yourself being more impatient and easily irritated by others. If possible, explain your feelings to co-workers, or work on something that is less demanding, at least for a time.

Community resources and support

The following organisations provide support for parents and families when a baby dies.

SANDS QLD INC.
Phone: 07 3254 3422
Free call 1800 228 655 (outside Brisbane and within Queensland).
Email: admin@sandsqld.com
Website: www.sands.org.au/

Red Nose
Phone: 1300 308 307
Email: rednose.com.au

Websites about pregnancy loss and grief

www.sands.org.au For more than two decades SANDS has provided sensitive support to parents and families who experience reproductive loss.

www.stillbirthalliance.org The International Stillbirth Alliance (ISA), a nonprofit coalition of organisations dedicated to understanding the causes and prevention of stillbirth. Their mission is to raise awareness, educate on recommended precautionary practices and facilitate research on the prevention of stillbirth.

www.stillbirthfoundation.org.au the Stillbirth Foundation aims to fund research into the causes of stillbirth and to raise public awareness of stillbirth.

www.nationalshare.org The mission of Share Pregnancy and Infant loss Support Inc. is to serve those whose lives are touched by the tragic death of a baby through early pregnancy loss, stillbirth or in the first few months of life.

www.hygeia.org Hygeia® is an international community of families who have endured the tragedy of miscarriage, stillbirth and neonatal/infant loss.

Websites about loss and grief

www.bereavementcare.com.au This Australian website has general information about grief and bereavement. It has an interactive site for children who have experience the death of a family member. It also provides some information on grief books.

www.grief.org.au The Australian Centre for Grief and Bereavement provides this site with information related to loss and grief education. It has some helpful information about the grieving process

www.grieflink.org.au The National Association for Loss and Grief provide this website which provides invaluable practical information on grief, how to cope with grief and how to support people who are grieving.

Recommended reading

For a comprehensive range of loss and grief books Open Leaves Bookshop provides an extensive catalogue and has an outlet in Brisbane at Highgate Hill.
Website: www.openleaves.com.au
Some excellent resources for children include the books:

• The Invisible String
• On the Wings of a Butterfly
• Water bugs & Dragonflies 
• Somebody came before you.

Further information and support

Please do not hesitate to ask your doctor or midwife if you have any questions or require further support.
The Mater Mothers’ Bereavement Support midwives can be contacted on:
07 3163 6621, 07 3163 3467 or mobile: 0414 828 742 

Mater’s Social Work Department reception can be contacted on:
07 3163 8031, and after hours via the hospital switchboard on 07 3163 8111.

The Pastoral Care Department is available seven days a week and can also be contacted via the hospital switchboard on 07 3163 8111

You may also like to attend our Perinatal Support Group - Cirlce of Hope - on the second Wednesday of each month. Click here for more information.