Perinatal loss service cares

Parents experiencing their worst nightmare are extended care and some answers. Paediatric and perinatal pathologist Dr Bligh Berry explains how.

The death of a baby, while in utero, is devastating for parents. A late stillbirth (28 weeks or more) can have a profound and long-lasting effect. For many parents, the baby has been named, nursery painted, car seat installed, and grandparents are excited. 

Dr Bligh Berry

In 2016, Australia’s late gestation stillbirth rate was estimated to be 35% higher than countries with the lowest rates. In 2015-16, almost 20% of all stillbirths and 5% of term stillbirths were classified as unexplained. Currently, six stillbirths occur each day in Australia. 

These numbers are devastating, as is the pain for parents – yet some of these stillbirths can potentially be prevented.

Following a Senate enquiry in 2018, stillbirth was recognised as a public health issue in Australia. This led to the Federal Government establishing the National Stillbirth Action and Implementation Plan in 2020 with 16 action plans, including stillbirth prevention, education, holistic bereavement care and stillbirth research. 

Furthermore, thorough stillbirth investigation offers an opportunity to detect previously undiagnosed maternal disorders, plan future pregnancy pathways, and aid the grieving process.

Stillbirth investigation is best thought of as a comprehensive care package. Having a post-mortem report available is of little use if the parents don’t have the opportunity for the findings to be explained. 

Knowledge about a newly diagnosed genetic disorder or recurrent placenta abnormality – with potential implications for future pregnancies – without an appropriate referral pathway in place, is potentially negligent. Leaving a parent to process the trauma of the loss of a loved one in an age of increased understanding of mental health seems unkind, when access to pastoral care and counselling is readily available. 

Care of a patient, in the context of a stillbirth, aims to address all the above.

This care is best provided through a perinatal loss service – the components of which include a coordinator, clinicians trained in stillbirth investigation, a post-mortem service, bereavement care, and clinical follow-up. 

The Paediatric and Perinatal Department at PathWest, Perth Children’s Hospital (PCH), is integral to the service, with a particular focus on post-mortem examination, bereavement care and close liaison with clinicians. 

There are five perinatal pathologists who also provide a diagnostic paediatric service. The post-mortem team consists of five perinatal pathologists, an experienced post-mortem coordinator, and mortuary assistants. 

Over many years, the team has developed a dedicated, integrated and comprehensive service. The team can assist with everything from transport of a baby to advice on funeral arrangements. The service is offered state-wide with no cost to the parents.

Grieving the loss of a child is a process, it begins the day your child passes and ends the day the parent joins them.

– BJ Karrer

The post-mortem process

From a practical aspect, there are three types of post-mortem examination which may involve cutting of the body, but not always. The range of examination offered include full, limited and external. Once a body is received at the King Edward Memorial Hospital (KEMH) mortuary, the actual post-mortem takes place at PCH where pathologists are located. 

The baby is prepared for post-mortem examination by a mortuary technician. This includes a standardised set of clinical photos and measurements. Social photos may also be taken together with hand and footprints, as per consent. A babygram (a form of x-ray) is performed on every baby, mainly to assess the skeletal structure and development. The body is then transported to PCH for the examination, always accompanied by a mortuary technician, and handled with great care and respect.

  1. Full post-mortem: the external aspect of the baby is carefully examined. A skin excision is then made from the sternal notch down to the lower abdomen. The chest plate is removed. All organs are examined, weighed and sampled. Clinical photographs are taken as required. Tissue is further sampled for ancillary studies (microbiology, virology, genetics) as required. It is usual practice to snap-freeze a pea-sized piece of tissue (usually muscle) for later genetic analysis if needed. The sampled organ tissue is processed into paraffin wax blocks, from which histological slides are prepared for microscopic investigation. The placenta is always examined as routine, regardless of post-mortem type, and examination includes sampling of tissue for histological examination and ancillary tests (as required).
  2. Limited post-mortem: the body is prepared as described above. The extent of examination is limited to the parent’s wishes. For example, only the brain or heart are examined, depending on the clinical scenario. A limited post-mortem may be appropriate when tissue needs to be taken for genetic investigation. In such a case, a small one-centimetre incision is made in the thigh and muscle sampled. The placenta is always examined.
  3. External examination: the body is again prepared as described above. The external aspect is carefully examined, but no incisions are made. The placenta is examined as per routine. A small portion of umbilical cord or placenta parenchyma is snap-frozen for future testing if required. 

Following post-mortem examination, all organs are returned to the body, which is carefully reconstructed. Once dressed, there is little evidence of incision and the baby can be viewed by parents, if desired.

The post-mortem report takes six to eight weeks to complete, depending on complexity, and is sent directly to the requesting clinician (not the parents). The integrated report lists all the important findings, and a comment is provided as to the likely cause of death (where possible). 

A plain language report, which describes the salient findings in an easy-to-understand manner, can also be requested. This is sent to the requesting clinician who can pass it on to the parents. Ideally, the parents are briefed on the findings.

In the setting of KEMH, parents can attend a perinatal loss clinic six to eight weeks after the death of their baby. This allows an opportunity for the findings of the post-mortem report to be explained and further follow-up or referral arranged. 

Parents requiring bereavement support are guided along appropriate care pathways. 

Finally, all deaths are reviewed at a mortality review meeting. The post-mortem report provides important information for death clarification and inform health statistics.

These steps form part of the care pathway for parents at a very difficult time. Understanding the cause of death can help bring closure, remove blame, and help with future pregnancy planning. Although a young life can’t be replaced, compassionate care can be a much-needed support.