SANDS Support

By Vicki Culling, Sands NZ

Yesterday I visited a couple in our local hospital. Their baby was born two days before. There was the usual business associated with a maternity ward – midwives rushing around with handfuls of notes, support staff distributing meals to the rooms, the sounds of brand new babies crying. However, the room I visited was very quiet; it was imbued with the heaviness of grief. Sally and Jim’s[*] baby, their firstborn son, had died eight hours after birth and was downstairs in the mortuary with the perinatal pathologist for a post-mortem.

A routine visit to the GP at 36 weeks of pregnancy turned from that wonderful pre-birth time full of wonder and anticipation to total and utter devastation, to tragedy being played out before their eyes. A slow heartbeat, concern for this little one still in utero, an emergency caesarean section and then a rushed transfer to the Neonatal Intensive Care Unit. And their baby died. Their precious little first born baby.

This is a real story of one family’s experience and for hundreds of families in New Zealand every year, it will sound far too familiar and bring up many memories of those awful, awful first couple of days when dreams are shattered and our world feels as though it’s coming undone. Birth is supposed to be all about joy – is there anything more joyful than a newborn baby? The combination of birth and death is heart-breaking, there is little or no joy and the innocence that we have as parents is gone.

In 2007 there were 677 perinatal deaths in New   Zealand. The term perinatal is used here to cover the death of a baby from 20 weeks gestation up to 28 days after birth. In New Zealand, stillbirth is defined as a baby who died after 20 weeks gestation/in utero or weighed more than 400 grams at birth. Early neonatal death takes into account the period from birth to seven days; while late neonatal death covers the period from seven days up to 28 days. (See the Perinatal and Maternal Mortality Review Committee website www.pmmrc.health.govt.nz for further information about perinatal mortality statistics in NZ).

Stillbirth and newborn death is a phenomenon that was experienced at much higher rates over the last couple of centuries – many of our great-grandmothers would have had babies that died; indeed they would have expected to experience a baby’s death during their reproductive lifetime. Nowadays it is something that is certainly not expected and a topic for which there seems to be less awareness and understanding. We know that things have changed since the 1940s, 50s and 60s when babies were whisked away without their mothers having the chance to see them, hold them and even know what sex they were. Unfortunately, some things have not changed tremendously. Parents of babies that have died during pregnancy or soon after birth report expectations from family and friends that their grief will be minimal because ‘it was only a baby’. There are still many comments said years ago that are still said today to parents in the hope that they will bring comfort – ‘never mind, you’re young, you can have another’, ‘it’s better that she died as a baby and not when she was older’, and ‘it’s for the best’. Parents also tell us that there is an expectation that once they have a subsequent, living baby, they will ‘get over’ the death of their stillborn or newborn baby and ‘move on’. This says something about our societal attitude to death and grief as well, not just about the stillbirth and newborn death.

So what support is there for parents and families who experience the tragedy of stillbirth and newborn death? One organisation exists primarily to support bereaved families and to raise awareness of perinatal death. It also extends beyond the definitions of perinatal death to support anyone dealing with the death of a baby in pregnancy, birth, as a newborn or infant, and due to medical termination or any other forms of reproductive loss. Sands [www.sands.org.nz] has groups around the country that offer support in a variety of ways. Some run support groups in which parents and family members come together and talk about their experience and their child. Sands recognises the power of telling and sharing stories and offers a non-judgemental space for bereaved parents to tell their story, share concerns and express their feelings. Groups also provide Moses baskets to local hospitals with clothing, bath packs and memory making materials that may be of use to parents. We also produce the Sands Support Pack, a folder containing six pamphlets that cover a range of topics – from planning your baby’s funeral to recognising grandparents’ grief. The pamphlets can also be downloaded from our website www.sands.org.nz. Telephone support, library books, and newsletters are also part of Sands’ support.

How can you support a friend (family member/ workmate) whose baby has died? The most important thing you can do is to keep on being a friend. As a friend prior to the death, you probably talked about what was going on in their life, about things that were on their mind and about life and the universe! Keep doing that. It might be that their baby is on their mind and they want to talk about it. Part of being a good friend is being a listener – there is nothing as helpful as having someone listen, really listen to us. They may want to talk about their baby six weeks after the death, and six months and two years and ten years! Being a friend is about sharing part of someone’s life and this incredible and sad experience is a part of theirs.

Don’t be too scared to mention the baby, in case you might upset them. Your friend will be thinking about the baby a lot and your mentioning their precious child might well bring tears to their eyes, but they are tears that would be shed whether you mentioned their name or not. Yes, call them by name and remember that they are a part of the family. They may not be there physically but they are a part of many people’s lives – their mother’s, father’s, grandparents’, siblings’, cousins’, neighbours’….

If you have problems talking about or even acknowledging the baby, maybe you might want to think about your own grief. What is it that is holding you back from talking about a beautiful and much loved baby that has died? If it’s just too sad, think about why that is.

Finally, (and this relates to anyone that is grieving) if you want to offer some support (and we tend to be a nation of do-ers who just want to get in there and do something for others) then saying the universal ‘if there’s anything I can do, just let me know’ will be of no help at all. You need to get specific. Your family members, friends, neighbours are in the throes of grief and despair and they will not think to ring and ask for a meal or for the dog to be taken to the vet. You need to get specific and offer tangible things like looking after siblings, cooking a meal, making phone calls or returning the car seat to Plunket.

If you, or anyone you know, would like to talk to someone or would like some support following the death of a baby – please feel free to contact Sands. Details of local groups can be found on our website. Sands survives on grants and donations, we receive no government funding, so if you are looking for a worthy cause/charity to support – we would appreciate any gesture.

Other New Zealand groups and websites that offer support and information to parents, families and whanau following the death of a baby are:

Babyloss Awareness Week – the 9th to the 15th of October is International Babyloss Awareness Week (also known as Pregnancy and Infant Loss Awareness Week) (see www.babyloss-awareness.org and http://october15th.com). Sands NZ and other baby loss support groups in New Zealand will be undertaking many activities during that week to raise awareness and provide opportunities for bereaved parents, families and whanau to come together to remember their precious babies. Please keep an eye on the Sands website for updated information of what is happening around the country.

[An earlier version of this article first appeared in Tots to Teens in 2006]


 

[*] Not their real names

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