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SUPPORT FOR PARENTS AND SIBLINGS

STORIES FROM THE STARS

Our NICF ‘Stories from the Stars’ drive supports siblings and parents navigating immense grief after the loss of a baby. Through storytelling and picture books, parents are supported to have difficult and honest conversations with children on the loss of a baby in their life.

How do books help?
Sadly, many families leave the Canberra Hospital without a baby, through miscarriage, stillbirth or neonatal loss. Many of these babies have older brothers and sisters who have their dreams shattered, are left confused, in shock and trying to understand why their baby has died. After traumatic events like the loss of a baby, a new version of a parent is born, as they navigate grief and parenting.
Books on loss and grief help parents to explain this challenging life topic, find comfort knowing that they are not alone on this journey and use rhyme and pictures to help make sense of this life changing event.

How was “stories and the stars” born?
Baby Francesca was born full term at 316 am on a November morning. She was beautiful with hazel eyes and long dark hair. She left this world suddenly, 36 hours later, cradled in her mummy’s arms and surrounded by the love of her Dad and two older siblings. That night her sister went out to the stars and said goodnight, and so started a ritual in the family home of talking to Frankie in the stars. The grief journey for her siblings has been long and hard. In the weeks following her death, they were gifted many beautiful stories to console and support them during this time. Books were healing and helped start many conversations around life and death.
Through these stories, Mum (Lyndsay) and dad (Ian) tried to answer some of the hard questions;

Why did Frankie go to heaven? 
Why did they choose her? 
When can we see her? 
Was it our fault? 
Is she safe? 

How can you help?
November 2022 was Frankie’s 4 th birthday in the stars. To honour every baby taken too soon, you can donate a book for families new to this heart-breaking journey. A collection of grief books will be provided for staff at the Canberra Hospital to gift families and siblings when a baby dies.

1) Gift a special book through our local Canberra bookshop ‘The Book Cow’, Kingston, in honour of a baby you know taken too soon, who lives in the stars.
– Follow this link to The Book Cow
– You will find collection of books selected by the Hospital, the Pastega family and
The Book Cow.
– Please select register to purchase
– Proceed to ‘Delivery Options’ and select ‘Stories from the Stars delivery’
– In the section “Notes (Optional)”, please advise in comments if this book is in honour of a baby you know taken too soon (name and year). If you would like us to notify the bereaved family of this donation, please also list contact detail (email or phone) and we will send a message
– Books will be collected and delivered to the NICU and Maternity wings of the Women and Children’s Hospital Canberra

OR

2) Donate – a tax deductible donation through the following to the Newborn Intensive Care Foundation’s Stories From The Stars account. All funds will be used to carefully select a range of books for local families.

If you would like your donation to honour a baby you have known and loved, please email our Projecteers with the baby name, and year. Please also notify us if you would like your name listed as the donor of the book, and/or if you would like us to contact the family to advise them that their baby was honoured through this campaign.
All details can be emailed to our team at storiesfromthestarsNCIF@gmail.com

3) Vouchers will also be provided for parents to select a healing book for their journey.

Books donated in honour of your loved one will include a card attached to the front, acknowledging their life. Sharing the name and life of our loved one taken too soon will provide hope and support to other families, reassuring them they are not alone.

Our Projecteers can be contacted with any questions at storiesfromthestarsNCIF@gmail.com
We look forward to hearing from you soon.

FATHER’S EXPERIENCES of LACTATION AFTER INFANT DEATH

The Newborn Intensive Care Foundation has sponsored research from the ANU into Father’s Experiences of Lactation After Stillbirth and Infant Death. The report is now available at:

https://sociology.cass.anu.edu.au/research/publications/lactation-after-infant-death-partners-experiences

You may also be interested in the link to the Australian Breastfeeding Association website that offers comprehensive advice about lactation care following infant death.

https://www.breastfeeding.asn.au/bfinfo/lactation-after-infant-death

 

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.

PALLIATIVE CARE

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.

BEREAVEMENT

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 HELP

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.