A story of grief and healing: Efrem and Blandina (PDF book) » stories of prenatal diagnosis

While congenital anomalies are more common than we think, we rarely hear the stories of the people that have received a prenatal diagnosis. We have collated some stories here, to share with you the variety of reactions, experiences and outcomes.

Note: these stories appear in random order.

We understand that stories which may empower one person, may be unhelpful for another.

Please use the dropdown category box to select a particular topic
or to avoid other topics. The decision-making category includes stories that reflect the vast array of potential experiences.

Select the View Profile button to read more about the story, or click on the image to go straight to the source.

Please contact us to let us know about any other stories featuring a prenatal diagnosis of congenital anomalies so we can share them here.

Photo of A story of grief and healing: Efrem and Blandina (PDF book)

About the resource

“At first, Efrem and Blandina’s only concern with their pregnancy was getting back to Australia safely after finding out they were pregnant overseas.

They checked in with a doctor who told them that they’d be fine to return home. He asked to keep in touch.

Over the coming weeks, like any new parents, Efrem and Blandina started imagining their new exciting future.

But, things took a sharp turn after their standard 13-week ultrasound. Their little one, who they had nicknamed 4.3 after a funny misunderstanding in an earlier check-up, had a neural tube defect. This condition was incompatible with life – meaning either their much-loved baby would be stillborn, or have a very short and painful life.

They made the painful decision to terminate their pregnancy out of their deep love for their baby’s wellbeing.

While we often understand grief as a result of stillbirth or during childhood, we don’t often talk about or hear about the grief felt by many other parents.

Termination of pregnancy and miscarriage brings all of the same feelings of loss and devastation, as parents grieve for a baby they never had a chance to meet, and for a life they never had the chance to love. Red Nose supports many different types of families who have experienced many different types of loss.

To help cope with their grief, Efrem and Blandina have turned their story in a book of hope and healing. Not only did they find this therapeutic, they also hope it will help other parents who have to make one of the most difficult decisions a parent can face.”

Their story is available now as a download from the Red Nose Grief and Loss Support Library.


neural tube defect