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Abstract

The illustrated booklet Stillbirth, Neonatal Death and the Grief Journey was funded by the Elizabeth Blackwell Institute for Health Research and the Wellcome Trust Institutional Strategic Support Fund as part of a wider project on grief and baby loss. The booklet is a co-produced resource, based on research evidence from an NIHR study of perinatal bereavement (iCHOOSE, PI Danya Bakhbakhi, collaborator), Dawson’s research on grief, and the experiences of parents; it was made in collaboration with Sands, the UK’s largest stillbirth and neonatal death charity. It is being offered as a free resource to hospitals and charities. We developed Stillbirth, Neonatal Death and the Grief Journey because we felt there was a need for an accessible resource which conveyed key information about the emotional and physical experiences that follow the death of a baby, with illustrations that capture the lived experience of grief. Current resources on this topic are sometimes dry or buried in information packs that also cover the practical, medical, and legal aspects of stillbirth and neonatal death. We wanted our booklet to promote tolerance and understanding by emphasizing that everyone’s experience is different and there is no one right way to grieve.
Stillbirth, Neonatal Death
and the Grief Journey
When our baby dies
Only we know how we feel about our baby who has died. The grief we
feel about their death is not equal to the length of time they lived, but
rather reflects the love, hopes and dreams we invested in them. There
is no hierarchy to different kinds of losses.
As bereaved mum Kaeti observes, ‘you become a parent as
soon as you see that positive pregnancy test’. Both before and during
pregnancy, we often imagine our child and our future with them so
that our baby’s death is also the loss of these cherished plans and the
life we had hoped to live.
Grief often comes in waves. It is common to feel guilt,
self-blame, or failure. We can also feel shock, sadness, anger, and
disbelief, sometimes moving from one emotion to another in rapid
succession. Although it can make us feel like we are going mad, this
barrage of emotions is a perfectly normal response to grief.
Whilst it is natural to want to avoid suffering, it is by allowing
ourselves to feel grief that we begin to comprehend the reality of our
baby’s death and slowly adjust to our loss. As psychotherapist Julia
Samuel MBE reminds us in
Grief Works
, ‘pain is the agent of change’:
it is through grief that we ‘find a way of living with a reality that we
don’t want to be true’.
However, grief is exhausting and it is important that we take
breaks from the emotional turmoil. We need to find ways to distract,
sooth and sustain us. We could consider going for a walk, meditating,
watching tv, exercising, cooking, gardening, or meeting up with a good
friend.
The physical and emotional
impact of grief
When our baby is stillborn or dies in infancy, we will usually be offered
choices on what we would like to do in the delivery suite. Everyone
reacts to bereavement differently, and there is no ‘right’ way to
respond, but many of us will value these opportunities to make
memories with our child. We can hold our baby, take photographs,
read to them, and have imprints of their hands and feet taken.
Most of us feel grief physically as well as emotionally. This
experience is often heightened for mums after a stillbirth or early
death, as we feel all the usual physical sensations following a birth
without having our baby with us to care for. Some of us may be upset
by our pregnant shape, while others want to retain it as a way of
remaining close to our baby. Many of us also find that our arms
physically ache as we long to hold our baby.
We can experience vivid flashbacks of the moment we heard
about our babys death, the birth itself, or nd it difcult to think of
anything other than our baby. Most of us will nd these memories
become less intense and frequent over time, but there is support
available if this doesn’t happen. We might consider having Grief
Therapy to help us process what’s happened or try Eye Movement
Desensitization and Reprocessing therapy (EMDR), an effective
treatment for trauma and post-traumatic stress disorder (PTSD).
We should try to surround ourselves with as much love and
support as possible. Many of us will value opportunities to share
experiences with those around us, acknowledging that our baby lived
and died and respecting them as a person. We might also find it helpful
to talk to other parents who have had similar experiences (which we
can do through Sands), or join a supportive community to share our
loss and remember our baby with other families.
Relating to our partners
and other people
Our experience of grief is as individual as we are. While some of us cry
and rage, others experience a numbing state of shock, become angry or
withdrawn, or actively try to keep emotions in check for fear they will
overwhelm us or distress the people around us.
Grief can affect siblings,
grandparents, and friends. We might
nd that our partners or other
people around us respond to the
emotional shock differently to us,
and this clash of grieving styles can
often cause more tension than the
loss itself. Although it can be easy
to assume that others feel less
intensely than we do, it is important
to remember that there is no single
‘right’ way to grieve. We all have
our own timeline for emotions and
ingrained coping mechanisms and
all these responses are valid.
Remembering our baby
and carrying them with us
Psychotherapist Julia Samuel suggests that externalizing our relationship
with our baby can help us maintain our continuing bond with them.
Physical objects that remind us of our baby often provide valuable
‘touchstones to memory’ by connecting us with our child in a concrete,
sensory way. We might, for example, create a memory box which holds
physical reminders of our baby, such as the blanket we held them in or
scan photographs. As time goes by, we can add to our box with the
letters and cards we write to our child on special occasions and
photographs of things we do to remember them. The evolution of our
memory box thus can express both our enduring love for our baby and
the way our grief journey has changed over time.
Although memory boxes provide a powerful way to maintain
our bond with our baby, some of us might find that they trigger
flashbacks or a feeling of panic. This can be a sign that we should
consider seeking additional support for our grief. We can then return
to our memory box when we feel ready.
As time passes, we may look for other ways to stay connected
to our baby and integrate them into our lives, finding ways to honour
their absent presence on birthdays, religious holidays and special
occasions. For example, we can:
plant or visit a tree that honours our baby
arrange a birthday party or bake a birthday cake
visit memorial gardens such as the Sands Garden at the
National Memorial Arboretum in Staffordshire where
we can write our baby’s name on a stone and add it to
one of the paths
visit – and perhaps scatter ashes in – a special place
arrange a family outing that we might have chosen for
our child that year (for example, we could visit the zoo
or have a picnic on younger birthdays, and go bowling, to
the cinema or a restaurant on older birthdays).
We may also think of other ways to mark the day and we might
consider taking time off work to allow ourselves space to focus on our
family and our baby. For example, Natalie chose a series of personal
celebrations for her daughter’s birthday this year: ‘This year our family
scattered petal confetti in the river for her and had lunch outdoors so
that I could escape the feeling of being “trapped” on this day which is
a recurring feeling tied to Auroras death. We then nished the day by
blowing bubbles with her brother to send up to her.
Post-traumatic growth
Psychotherapist Robert Neimeyer suggests that we process grief by
retelling our story of loss, integrating our loved one into ourselves, and
reinventing ourselves and our lives in light of our bereavement. Many
of us eventually find that grief also gives us a deeper understanding of
ourselves, our relationships, or our spiritual or material world – a
process psychologists call post-traumatic growth.
As bereaved mum Lucy explains, ‘you can’t opt out of trauma,
and nor does focusing on the positives make the negatives go away.
Finding meaning and purpose on the other side of deep grief required
the perspective that only time affords […] After a year I was able to
see glimpses of a possible strength or benet from the loss of Ada: a
renewed recognition of the fragility of life, a profound appreciation of
what is truly important – love, kindness, work for the common good.
Three years later, the grief remains, but I also feel the love and wisdom
she gave us in her short life’.
We can’t control our losses, but we can choose the way that
we reshape our lives in response to them. Like Lucy, we might discover
that we have a greater compassion for others, an enhanced
appreciation of those we love, or a new understanding of life’s precious
brevity. Some of us might also decide to reach out to others through
charity work or find other ways of supporting people in need.
While we will never forget our baby or ‘get over’ our loss, most
of us will nd that time changes our relationship to grief and we can
eventually remember our babies with more love than pain.
Bereavement support after the death of a baby
A Child of Mine – Help for Bereaved Parents
(www.achildofmine.org.uk);
Helpline: 07803 751229
Antenatal Results and Choices (ARC) (www.arc-uk.org);
Helpline: 0845 077 2290 or 0207 713 7486
At A Loss (http://www.ataloss.org/nd-support/search)
Child Bereavement UK – CBUK www.childbereavementuk.org);
Helpline: 0800 02 888 40
The Child Death Helpline (http://childdeathhelpline.org.uk);
Helpline: Freephone 0800 282 986 or 0808 800 6019
The Compassionate Friends (www.tcf.org.uk);
Helpline: 0345 123 2304
Cruse Bereavement Care (www.cruse.org.uk);
Helpline: 0808 808 1677
Lullaby Trust (www.lullabytrust.org.uk); Bereavement Support
Helpline: 0808 802 6868
Miscarriage Association (https://www.miscarriageassociation.org.uk/);
Helpline: 01924 200799
Petals (www.petalscharity.org)
Sands (https://www.sands.org.uk/);
Helpline: 0808 164 3332
For further resources, see: https://www.sands.org.uk/usefullinks
& http://www.ataloss.org/nd-support/search
Written by Lesel Dawson
Illustrated by Jayde Perkin
This booklet grew out of the research and experiences of many
people. Thanks especially for the contributions from:
Danya Bakhbakhi, Peter Byrom, Jen Coates, Lesel Dawson,
Cleo Hanaway-Oakley, Natalie Le Grange, Mary Lynch,
Kaeti Morrison, Tamarin Norwood, and Lucy Selman.
Research Associate: Rachel Hare
This work was supported by the Elizabeth Blackwell Institute for
Health Research, University of Bristol and the Wellcome Trust
Institutional Strategic Support Fund.
With special thanks to:
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