CANBERRA MOTHERCRAFT SOCIETY (CMS)
The Canberra Mothercraft Society Inc (CMS) supports families of young children living in the Australian Capital Territory and surrounding region of New South Wales.
CMS has provided professional health and social services to families of young children in the ACT and surrounding region of NSW since 1926.
Through the Queen Elizabeth II (QEII) Family Centre and CMS community development programs, we deliver complex primary health care services in a modern, flexible, effective and responsive way. These services extend to partners, grandparents, friends and other primary carer
THE PARENT-INFANT RESEARCH INSTITUTE
PIRI is committed to supporting parent well-being and infant development (conception to 2 years) through research and evidence based treatments.
The Parent-Infant Research Institute (PIRI) is a vigorous and innovative Australian research institute whose vision is to improve the emotional well-being of parents and to optimise infant development.
PIRI provides a unique contribution to early intervention in Australia by combining basic research and clinical expertise to address perinatal depression and other difficulties facing parents and infants. The Institute aims to become the pre-eminent body in Australia conducting research in parent-infant difficulties.
Our areas of specialty include:
- Supporting the mental health of parents in the transition to parenthood
- Antenatal and postnatal depression and anxiety
- Mother-infant relationships
- Infant development
- Mitigating the impacts of premature birth
- Screening and identification of antenatal and postnatal depression
- Developing intervention
CANBERRA HOSPITAL FOUNDATION
The Canberra Hospital Foundation has been set up by the ACT Government to raise funds for all areas of the Hospital including the Centre for Newborn Care. Go to www.canberrahospitalfoundation.org.au
MULTIPLE BIRTHS ASSOCIATION
Canberra and Region Multiple Birth Association (CARMBA) is a support network for parents, grandparents, legal guardians, and expectant or adoptive parents of twins, triplets, or more! Their aim is to offer support and provide information to multiple birth families throughout the ante and postnatal periods, the pre-school stage and the primary and secondary school years. Membership is open to all parents, guardians and grandparents of multiple birth children.
Go to www.carmbra.org.au
PREGNANCY, BIRTH AND BABY
Pregnancy, Birth and Baby is a national Australian Government service operated by Healthdirect Australia. They provide a range of services that can help Australians in their parenthood journey, from practical advice and resources, to help finding support services including:
• A video call service with a maternal child health nurse
• Help finding local health services
• A-Z general advice on the parenting journey
• Pregnancy, Birth and Baby helpline for confidential advice
• Due date calculator
Their clinically approved health information is easy to understand and simple to follow and their pages link to related content from some of Australia’s most trusted organisations and peak bodies, to help guide visitors to quality Australian content. www.pregnancybirthbaby.org.au/neonatal-intensive-care-unit
MAKING CRITICAL CARE DECISIONS
One of the hardest things about having a very sick baby is that no one can tell you exactly what to expect. Your baby’s condition can change quickly and therefore the treatment options can change rapidly as well.
Making the decision to limit or stop your baby’s intensive care is devastating and very few parents feel emotionally prepared to deal with this. You may disagree with the medical staff or even your partner about it. You may feel that you are not ready to make that decision.
Take your time and talk to the nurses, doctors and other support staff around you; with their experience and knowledge in these matters, they can be invaluable at such a crucial time. All information and advice will be given with your baby’s best interests at heart. The Hospital has a social worker on site to help you and there is also spiritual support available, should you wish.
Getting as many facts as possible will give you more confidence that you are doing what is right for your baby. It’s important that the doctors and nurses talk openly with you so you know what’s happening and so that they recognise all of your concerns. Don’t be afraid to ask lots of questions, or the same questions over again. Keep asking until you really feel you understand the situation.
Your baby’s condition can change rapidly and you may need to respond by making decisions quickly. But wherever possible, you should have time to think, seek more advice and find support. You should never feel pressured into making a decision you don’t really agree with.
Your baby’s doctors and nurses can take some of the pressure off you by sharing in the responsibility. Making decisions together with parents is the way that doctors and nurses are expected to work, under professional guidelines and the law. They bring their knowledge and experience to these difficult decisions. At the same time, you are closest to your baby and bring your own perspective. All the information is weighed up so you can feel confident in the decisions that you all make.
You don’t have to face this alone. Talk to the people you are closest to – your partner, family and friends.
Medical care for preterm and sick babies has made huge advances. But some babies are so unwell that they are not likely to make a straightforward recovery. It’s a terrible situation for parents when they hear their baby might not survive. The fact that it can all happen very quickly makes it even harder. There is a lot that the team can do to support you and your baby during palliative care.
MAKING DIFFICULT CHOICES
At a time like this, you may have to make some difficult choices. You and your family should receive care that helps you find the right information and support at the right time to make these decisions for your baby. Along with the doctors and nurses, you might decide to start or continue intensive care for your baby. This means a ventilator to breathe for your baby and other life support and drug treatments. You may decide that it is time to stop all or some of the active medical treatment for your baby, or not to start any new treatment, should your baby’s condition change.
Whatever you choose, keeping your baby pain-free and comfortable will be a priority for all the doctors and nurses. This is often referred to as palliative care. This care is for babies and their families when the baby is recognised as having a life-threatening or life-limiting condition. It does not necessarily mean that your baby won’t survive. Palliative care focuses on improving quality of life, reducing pain, and supporting you and your family, helping you to make practical arrangements and cope with your emotions.
It should be possible to have the care you want for your baby in the place you want – at home, in Canberra Hospital, in a hospital closer to your home or in a hospice. The hospital team should also offer you and your family emotional, spiritual, psychological and practical support.
At Canberra Hospital neonatal unit and children’s ward staff are very skilled are caring for individuals with life limiting conditions. There is a team of staff to support you including medial staff, nursing staff, palliative care nurse, social workers and Aboriginal Liaison officers. Care can be provided in the ward, in a private family room or even some-time in the reflective garden. If you live in an area with a hospice, this offers more home-like surroundings than a hospital. People working in a hospice are very skilled at caring individuals with life-limiting conditions.
Every parent’s experience is individual, and every circumstance is different, but the death of a baby can bring a grief that is deeper and lasts much longer than most people realise.
“After 25 years I still choke up and get emotional when I talk of her.”
Peter, father of Hanna (born full-term, lived to two days).
CARING FROM THE START
Many parents who have been through this experience have talked about not wanting to get too attached to their baby because they are afraid that their baby will not survive. However, research has shown that those who did get involved in their baby’s care, even though their baby eventually died, say that knowing they had done all they could while their baby was alive helped them to deal with the loss of their baby later.
HOW YOU MIGHT FEEL
The grief that comes from losing your baby can be much deeper and last longer than most people expect. Although people may say that you will ‘get over it’, you are likely to ‘contain’ the experience and carry it with you for the rest of your life. Everyone’s circumstances are different and every experience is individual.
In the first few days, you may find it difficult to believe that your baby is no longer with you and it may seem as if you are in a bad dream. The reality will slowly unfold and you may experience the pain at its worse just when you, and others, think that it should be ‘getting better’.
Parents, especially mothers, easily blame themselves for their baby’s condition and often feel guilty, as if they should have been able to stop the death from happening. You may feel angry with yourself, your loved ones and the health professionals who looked after your baby.
The death of a baby is a devastating experience. The effects of grief can be overwhelming and it can be hard to take in information, to make decisions or to imagine how you are going to cope. Often parents feel overwhelmed and frightened by the intensity of their emotional and physical pain. The grief process will take its course, but if you are concerned, it may be beneficial to seek help.
Talking things through with someone who understands can make you feel less isolated and help you see that your feelings are entirely appropriate. Understanding the grieving process can help to reassure you that what you are feeling is normal. It may be helpful to talk to your GP, social worker, a bereavement counsellor, a red nose counsellor or another professional supporter.
You might also find it helpful to visit the Rednose grief and loss website.
SAYING GOOD BYE
When your baby has died around the time of birth, you may have only a few memories of him or her. You may also have very few keepsakes.
Hospital staff now offer parents opportunities to create memories of their baby and to collect keepsakes that will help them to remember their baby. Although you may feel unsure about doing this, photos and other items can be precious, especially in the years to come. Having keepsakes to share with family members and friends may also help them to understand what the death of your baby means to you.
The staff caring for you will suggest a range of things you could do. Take time to think about what is right for you. If your baby died in the neonatal unit, you may have had time to start doing some of these.
The neonatal unit has a room where you can be alone with your baby if you wish. Staff may ask if you wish to wash and dress your baby, or if you would prefer them to do this for you. Most units will take a photo of your baby, if you give permission. The hospital might offer to arrange a professional photographer who is experienced in taking photographs of babies receiving palliative care. You might also receive a memento card with a footprint or handprint and a lock of your baby’s hair. Some parents keep the baby’s namecard, blanket and hat. Keepsakes like this affirm that this baby was part of your family and always will be.
You will be able to stay with your baby for as long as you like. The Hospital has multi-faith prayer rooms and chaplains to offer their support if or when you need it.
The Hospital can also offer some bereavement counselling to help you. You can also talk to your faith leader or a funeral director.
SUPPORT FOR SIBLINGS
It can be extremely difficult to explain to your other children why their brother or sister has died. Try to encourage your children to talk about how they are feeling and to acknowledge what has happened to their baby brother or sister. Be as open and honest as you can about what has happened and explain things in language that they will understand. Most of all, be honest and open about how you feel. Do not be afraid to show your emotions, likewise let them cry.
At some stage, most children blame themselves for the death of their baby brother or sister, so explaining the death in terms of ‘it was nobody’s fault’ is very important. A recent study found that the most important things in dealing with a child’s grief included:
- Recognising and acknowledging their grief.
- Including the child in family rituals.
- Keep the memory of the baby alive in the family.
For more information and support for the death of a baby sibling speak to the hospital nursing staff and social workers.
Financial difficulties can also have an impact at this time and add to the anxieties that you may already be facing. The rights and benefits to which bereaved parents may be entitled are complicated and depend on many things, including the length of the pregnancy, whether your baby was stillborn or lived for a short time after birth, whether you are employed and your earnings before the birth. The hospital social workers can help with financial questions.
The NICF would like to acknowledge and thank Bliss in the United Kingdom for allowing us to use the information on their site www.bliss.org.uk as a template for the above information.