Some expectant mothers, fathers and other parents are given unexpected news about the health, development or genetics of their unborn baby. This may be that their baby has an increased-chance of a condition or that there is something unexpected about the way the baby has grown. These differences and conditions are sometimes called fetal anomalies, abnormalities or birth defects.

Differences and anomalies can vary widely, some may be called ‘minor’ and the likely impact on the baby may be small. Some anomalies are considered ‘major’ and are associated with significant medical or surgical care, disability and sometimes, early death. Often, the actual impact of the anomaly is uncertain.

Receiving unexpected news about a baby can be deeply distressing and traumatic. For some families, the hardest part is receiving the news, as their image of their future family, hopes, and expectations are suddenly thrown into question. For others, it is the uncertainty, the decisions faced, or the gaps in care that feel challenging or overwhelming. At times, it is the judgements and assumptions of others that cause the most harm.

In Australia, families have access to high-quality medical care, but attention to the psychosocial aspects of care often falls behind. Families may find themselves well supported with medical information, but we know that families need more than information – they need support to understand what it means and to navigate the emotional, social, moral and practical complexities that come with this information.

An increased-chance finding or prenatal diagnosis is not the end of the story – it is the beginning of a journey through the unexpected.