Resources for parents, health care professionals and researchers

ISA is aiming to provide a high quality comprehensive source of information from across the world towards improving understanding and prevention of stillbirth for parents, health care professionals and the community with key information on some fundamental issues and questions regarding stillbirth as well as links to other relevant sites.  Please contact us if you would like to contribute to our growing international library of resources.  Thank you in advance for your contribution!

 

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, prior to 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 in an effort 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 pressure 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. Health care 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 were, 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 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 are able to 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, prior to 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 to arrange 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 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. 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 at 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. There are different examinations such as x-rays, ultrasounds and blood tests that can be conducted in place of a full autopsy if parents prefer.

The information from an autopsy can sometimes be helpful in understanding what might have happened to cause the baby to die, answering an important question for many families. However at this point in time, up to 60% of autopsies in Western countries do not provide an explanation 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 about 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” remain. 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 own 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 web sites 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 with others who have been through this journey can help lighten the load and comfort their hearts.

The Impact on Family

Couples will likely respond and grieve differently following the death of their baby. This relates to gender, past 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 may be 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 then 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 who 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 themselves 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.