Stillbirth: The
Basics for parents, families and the community
This article gives a layman’s overview of
stillbirth which addresses some of the key choices parents should have when
their baby dies. From creating memories to autopsy and funeral, the importance
of saying hello before saying goodbye is emphasized. Involvement of all
family members is encouraged and a discussion of the natural grief response is
also included.
ISA wishes to acknowledge the past ISA Parent
Advisory Committee members for writing this article led by Vicki Culling, Sands
NZ, and Ros Richardson, SIDS and Kids Australia.
Understanding the
Basics of Stillbirth
While stillbirth is defined differently around the
world in terms of gestational weeks and weight, it is generally understood to
be the death of a baby in utero, before or during birth. The baby is born
‘still’, showing no signs of life.
Parents do not expect their baby to die. Instead,
they expect to build a lifetime with their children. Nor do they expect to
outlive their children – the cycle of life is not supposed to end at the
beginning.
When a baby dies it is hard to think clearly, and
parents are faced with many difficult decisions. In Western countries, it is
generally believed that parents need to make these decisions for the baby
themselves, perhaps with guidance from sensitive caregivers. Others may offer
to make the decisions for the parents to protect the newly bereaved. There are
few chances to create a lifetime of memories, and parents need to make
decisions that are best for them, and not what others think would be best.
One of the most important things to do at this time
is not to hurry. There is no need for things to be rushed, although others may be
pressured for quick decision-making. For those who are unfamiliar with death
and its rituals, it may feel as though decisions must be made straight away and
that the sooner the baby is buried, the sooner parents can ‘return to normal’.
However, it is important to remember that there is little time to be with the baby
physically and a limited time to create important memories that can bring much
comfort to parents over their lifetime.
As parents commence their grief journey, their
initial decisions regarding their baby may change. With the allowance of
sufficient time, they can make choices that are right for themselves and their
baby. It is for the parents to decide about having contact and spending time
with their baby and it is common for parents to change their minds about these
things. Healthcare professionals and support people need to be in tune with the
changing needs of parents. In the Western world ‘standards of care ‘are being
developed to ensure that families are offered many opportunities to experience
their baby to the fullest. The goal is to help them to have a meaningful
‘hello’ before they say ‘goodbye’.
Creating Memories
For many parents and families, spending time with
the baby and creating as many memories as possible honours the baby’s life and
existence. Creating memories and then sharing them over time is a real ‘key’ to
healing for many parents who have experienced the death of their baby. These
special times, ceremonies, and rituals can provide much comfort in the
challenging weeks, months, and even years ahead.
There are many things parents can do that may help
them on their grief journey and with the eventual integration of their grief
into their lives:
Many parents choose a name for their baby, no matter how many weeks into the
pregnancy they are, while for others this is not so important. Some names are
suitable for both sexes if it is not clear whether the baby is a boy or a girl.
Naming the baby can confirm the baby’s place in the
family and may also help family and friends to view the baby as real and ‘worth
grieving for’. More support often comes from the community when names have been
given and rituals such as funerals are held.
Parents are encouraged to spend time with their
baby if that feels right for them. If their baby is wrapped, it may be
important for parents to unwrap the baby and look at his or her body. Some
people regret that they did not open their baby’s eyes. Many, many parents
comment on how important it was for them to touch, hold, cuddle, and talk to
their baby.
Parents may wish to sponge or bathe their baby with
salty water, which acts as a natural preservative. Soap may not be helpful as
it removes the natural oils from the baby’s skin. Baby oil can help add
moisture to the skin. Hospital staff can support and assist parents with this.
Many parents make or choose special clothes for
their baby. Some hospitals have a selection of appropriately sized clothing for
the baby. Usually, they will offer this, but parents can ask to see what is
available. Some parents dress the baby in one set of clothes initially and save
another set for the funeral. This way they can keep a set of clothes that their
baby has worn. Dressing their baby themselves, or being present while a
caregiver dresses their baby, can become a special memory for bereaved parents.
Parents may wish to spend time with their baby at
home, before the funeral. For centuries birth and death took place at home and
only during the past few decades has this changed. It is a parent’s right to
take their baby home and/or arrange for the funeral director to bring the baby
to their home. Many hospitals and health professionals will provide this option
and assist families in arranging this. Parents can still take their baby home
even if an autopsy/post-mortem has been conducted. Parents may wish to lie with
their baby in bed (in or out of a basket or a casket). They may wish to see the
baby in the cot or cradle they had prepared for him or her. Being at home with
the baby may also be a further opportunity for family and friends to ‘meet’ the
baby in a more relaxed environment than the hospital.
For many parents, photographing and taking video
footage of their baby can be a very special way of remembering him or her. The
use of digital photography means that many photos can be taken and then stored
on a disc or printed out. There are a few things that may complement the baby’s
features when taking photos. For example, if the baby is very premature, using
a light blue rug or blanket as a background may allow for some of the baby’s
features to be shown. Editing pictured in black and white or monochrome creates
a soft and more appealing touch. Photographing feet, hands, or ears showing the
perfect parts of the baby can allow for lovely memories, particularly if the
baby has some imperfections. It may be important that the whole family is
included in photos of the baby, rather than only the mother with the baby or
the baby on his or her own. Many parents and families speak proudly of the
photos they have of themselves and their baby, especially those where despite
the tragedy and sadness, they managed to smile and feel proud as parents. A
professional photographer may be able to come to the hospital or home to take
photos.
Video footage can be taken in the hospital, at home,
and the funeral. At a later time, it can be set to music or the parents may
like to narrate the film.
It is never too late to make some memories:
- Write a letter, song, or poem to or about the baby
- Prepare a family tree including the baby
- Keep a journal to record thoughts and feelings about the baby
- Hold a memorial service or blessing – a year, or even 20 or 30
years later
- Plant a tree of remembrance – perhaps one that flowers around the
anniversary of the baby’s birth.
- Design a memorial to place on the baby’s grave or in another
special place
- Enter the baby’s name in a hospital book of remembrance
- Make a cross-stitch birth sampler, a photo frame, a memory box, a
ceramic tile
- Adopt a star
- Give gifts to other children during the year in honour of the baby
Amongst the many decisions that parents and
families must make when their baby is stillborn is whether or not to give
consent for an autopsy or post-mortem examination of their baby’s body. Another
difficult decision is regarding the burial or cremation of their baby’s body.
Autopsy/Post Mortem
Autopsy or post-mortem are terms that describe the
same procedure – a surgical examination of a body after death, which is
conducted by a qualified pathologist to determine the cause of death or to find
out more about factors that might have contributed to the death. Regulations
about autopsy differ throughout the world, but parents usually have to give
their written consent for an autopsy to be conducted on their stillborn baby’s
body. In many countries, when parents consent to an autopsy they are often unaware
that they are also consenting to clinical photos of their baby being taken. Different
examinations such as x-rays, ultrasounds, and blood tests can be conducted in
place of a full autopsy if parents prefer.
The information from an autopsy can sometimes help
understand what might have happened to cause the baby to die, answering an
important question for many families. However at this point, up to 60% of
autopsies in Western countries do not explain and the figure is higher in
developing countries. In addition, a standard examination has not been adopted
within most countries, let alone throughout the world, which makes finding
causes very difficult. Medical and nursing care providers can give parents
information about autopsies and the regulations in their local area. For many
families, it is important to see, touch, hold, and dress their baby following
the autopsy.
Cremation or Burial
Along with the decision about autopsy, the decision
to cremate or bury their baby’s body is another complex decision that parents
have to face following stillbirth. There are often many religious, cultural,
family, and even financial issues to consider. Cremation is becoming more
commonly chosen worldwide, with grounds for burial plots becoming increasingly
expensive and less available. When a baby’s body is cremated, only a small
amount of “ashes” remains. Some families choose to scatter the ashes at a
significant place, while others keep the ashes in their care. Many young
parents have not contemplated notions of burial or cremation for themselves at
the time of their baby’s death, and so they may make decisions for both their
baby’s and their final resting place at this time.
Babies may be buried in a particular section of a
cemetery that is especially for babies and children, which can provide great
comfort for families. The cost of burial can become very high and hospital
staff will be able to provide information about local options for families.
Placing a notice in the births and/or deaths column
in the newspaper can be a helpful way to acknowledge the birth of the baby. If
a private funeral is chosen, parents may wish to wait until afterward before
placing a notice. One benefit of placing a notice in the newspaper is that it
may be a slightly easier way to let the community know that the baby has been
born and has died.
Milk Suppression
It can be very distressing for bereaved women that
following the death of their baby, their body will still produce breast milk.
This is one of the most difficult issues for bereaved mothers to cope with,
both physically and emotionally. This can seem so unfair when their baby has
died, yet their body continues to function as it would if their baby were
alive. In some communities and in some hospitals, breast milk can be expressed
and donated to sick babies.
The amount of physical discomfort once breast milk
‘comes in’ will vary with each individual. Fresh cold cabbage leaves inside a
firm bra or binder are the most common ways used to suppress lactation,
combined with a painkiller to reduce the discomfort. Doctors can prescribe
tablets to prevent lactation. These are effective for some women; however, many
women find they simply delay milk production, which can prolong the body’s
natural process. Health professionals caring for the family can provide
information about medication and natural alternatives.
Grief
Society’s response to the death of a baby can leave
bereaved parents feeling confused and alone. When others have not met this
unique little person of whom there is little history and memory, the advice to
‘move on quickly’, ‘have another,’ and ‘don’t dwell’ are often given, in the
belief that such recommendations will be helpful and will somehow soften the
blow. For parents, however, the tragic loss of their beloved child and the
future hopes and dreams they held for themselves as parents, can be
devastating. The memory of these precious little ones is treasured forever by
many parents and siblings. The grief that comes with such loss is real,
important, and life-changing for many people. Finding support in the family and
community is critical. During the past few decades, the increase of support materials,
groups, organizations, and websites has increased tremendously. Bereaved
families are encouraged to know their pain is real, their grief is necessary to
heal, and their love for their baby will never end. Finding support from others
who have been through this journey can help lighten the load and comfort their
hearts.
Secondary
loss
It involves grieving for the dreams and hopes they had
for their baby, as well as the loss of their identity as parents. The role of the
caregiver is suddenly taken away, leaving a void in their sense of purpose.
This loss can shake their self-confidence to its core, leaving them questioning
their abilities and worth. For many, it also challenges their faith and belief
systems, as they struggle to reconcile the unfairness of losing a child. This
can lead to strained relationships with friends and family, creating distance
and isolation. The sense of community may also decline, as they may feel
disconnected from others who haven’t experienced such.
Couples will likely respond and grieve differently
following the death of their baby. This relates to gender, history, and
personality. One partner may wish to stay with their sadness and memories,
recounting and replaying their experiences over and over and considering the
loss of the future with their baby. Crying and showing emotions may very well
be the path to grieving and healing over time. Others may be just as devastated
and upset but may show it differently. Tears, sadness, anguish, and even anger
may be kept more private.
Showing an upbeat attitude after a short while maybe
this person’s goal, in hopes of helping their partner to feel happy again.
For many couples, the best approach is to try to
discover each other’s style of coping and to honour it and not try to change it
for each other. Asking the ’emotive’ person to hold it in and ‘buck up’ or
‘move on’ can make things worse and vice versa. Knowing that different ways of
grieving do not equate to how much pain the parent is in or how much love the
parent has for their baby, can help a relationship. Making assumptions about
what the other person wants or feels may be unhelpful. Communication,
understanding, and patience are the keys to living through this together and
becoming stronger as a couple.
Other family members also grieve, most often
according to their personalities and experiences. Many parents have found it
helpful to include their other living children in this experience, rather than
keep them in the dark. Children always know that something is going on and they
will use their imagination to explain the upset and changes at home. There are
many resources for children regarding death on the internet and in publications
available through bookstores and organizations that assist bereaved families.
Other family and friends may say some things that
are not always supportive, in an attempt to help the bereaved family. While
they may have a genuine desire to help the bereaved parent and they may also be
hurting, they may operate out of fear, confusion, or ignorance. Once again,
communication is the key and there are many resources available to help family
and friends understand the significance of the loss.
Some liken grief to the waves of the ocean – there are feelings that lap at our feet like a gentle tide and other feelings that swamp us like an unexpected wave. Take things slowly and gently.