stories of prenatal diagnosis

We know that prenatal diagnosis is more common than many think. Yet, we rarely hear the stories of the people that have received unexpected news about the health, development or genetics of their unborn baby. We wish to change that so parents no longer feel hidden or isolated.

We have collated parents stories to share with the variety of reactions, experiences and outcomes.

Note:

  • These stories appear in random order.
  • Stories which help 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.

Click on the logo/image to go directly to the story, or select the View Profile link if you wish to read more about it first.

Please contact us to let us know about any other stories we should include here.

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Photo of Fotini’s story – The pain of terminating much wanted pregnancies (post)

Fotini’s story – The pain of terminating much wanted pregnancies (post)

A mother’s experience of undergoing two TFMRs after receiving a diagnosis of spina bifida in two babies, Bruce and Blake.

Photo of One Screened Every Minute (podcast)

One Screened Every Minute (podcast)

Ordinary people who have received extraordinary prenatal screening results. Join them at the crossroads.

Photo of The agony of choosing termination for my baby who had foetal anomaly (article)

The agony of choosing termination for my baby who had foetal anomaly (article)

There is a silence around the death of a baby, and a greater hush around the issue of termination for foetal anomaly. Laura Doward shares her life-changing experience.

Photo of Australian Birth Stories: Bianca (podcast)

Australian Birth Stories: Bianca (podcast)

An interview with Bianca who unexpectedly navigated the complex reality of a Downs Syndrome diagnosis. Despite multiple health professionals advising her to terminate, she chose to keep her baby, journeyed through a tumultuous pregnancy and delivered him at 34weeks via cesarean.

Photo of Too Peas in a Podcast (podcast)

Too Peas in a Podcast (podcast)

Listen to Mandy and Kate laugh (a lot) and cry as they chat to each other and friends about parenting multiples with disabilities and additional needs. Some episodes feature stories that include prenatal diagnosis.

Photo of Grief, acceptance and special needs parenting: it’s complicated (blog)

Grief, acceptance and special needs parenting: it’s complicated (blog)

A mother’s reflection about grief, acceptance, joy and growth after continuing a pregnancy following a prenatal diagnosis.

Photo of The Still Mama Tribe Podcast (podcast)

The Still Mama Tribe Podcast (podcast)

Hosted by two mothers who have experienced baby loss (one following a termination for medical reasons), the Still Mama Tribe Podcast ‘aims to educate and create a community of families and professionals who come together to break the stigma and shame of baby loss.

Photo of One Screened Every Minute: Belinda (podcast)

One Screened Every Minute: Belinda (podcast)

Belinda is a full time professional and mother of four children. She shares her experience of non-invasive prenatal screening and termination following a Trisomy 21 diagnosis. Belinda grew up as a hearing child of deaf parents.

Photo of Defiant Birth: Women who resist medical eugenics (book)

Defiant Birth: Women who resist medical eugenics (book)

Courageous stories of women who continued their pregnancies despite intense pressure from doctors, family members and social expectations.

Photo of Nova-Lee’s story (Blog)

Nova-Lee’s story (Blog)

This is Nova-Lee’s story, of an unexpected heart diagnosis during a scan for premature water rupture before 30 weeks and perinatal palliative care/comfort care. “We moved to the butterfly room, where Nova was placed on my chest, with dad next to us. Taking in every last moment. From memory Nova-Lee lived for 3 hours, at 10:50pm.”

Photo of Still a Mum by Meagan Donaldson (Book)

Still a Mum by Meagan Donaldson (Book)

What no parent wants to face: Meagan Donaldson was 23 weeks pregnant when tests confirmed that her unborn baby had a rare condition. Told the prognosis for their daughter was poor, they made a heartbreaking decision to say goodbye to their little girl. Soon after, Violet Grace was born. Still, but perfect.

Photo of The heartbreak of perinatal and infant loss (podcast)

The heartbreak of perinatal and infant loss (podcast)

Families shared their experiences of receiving life-limiting prenatal diagnoses and moving through pregnancy and perinatal palliative care.

Photo of The Prenatal Bombshell (book)

The Prenatal Bombshell (book)

The Prenatal Bombshell is a companion guide through the journey from diagnosis and beyond once you’ve decided to either continue or end your precious pregnancy. The lived experiences of other women who have gone through this journey are also included to provide hope, support, and guidance through difficult times.

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

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

After Efrem and Blandina made the difficult decision to terminate their pregnancy, they turned to writing their story to heal themselves and help others.

Photo of One Screened Every Minute: Chantelle (podcast)

One Screened Every Minute: Chantelle (podcast)

When pregnant with her youngest son Chantelle received a high chance screening result for Trisomy 21 or Down syndrome. Chantelle talks us through how she and her husband, who initially had different ideas about continuing the pregnancy, navigated the decision-making that followed.

Photo of Special: antidotes to the obsessions that come with a child’s disability (book)

Special: antidotes to the obsessions that come with a child’s disability (book)

“Most of us expect to meander through the motions of love, marriage and (textbook) baby in the carriage, but once in a while life has something a little more special in store…”

Photo of Australian Birth Stories: Sarah Jade (podcast)

Australian Birth Stories: Sarah Jade (podcast)

After a long and traumatic 33 weeks of pregnancy, Sarah let go of her second child Aksel, who had severe brain malformations.

Photo of Stories and images from the CleftPALS family (PDFs)

Stories and images from the CleftPALS family (PDFs)

Some stories from the CleftPALS family (two include prenatal diagnosis)

Photo of One Screened Every Minute: Naomi & Al (podcast)

One Screened Every Minute: Naomi & Al (podcast)

They are the parents of two boys – Frankie, who is seven and Joe. Joe passed away suddenly just before his second birthday. Only a few months later, Naomi became pregnant. They talk about the decision to terminate the pregnancy when a non-invasive prenatal screening showed a high chance of a chromosomal deletion.

Photo of The Pink Elephants Support Network: TFMR shared stories (posts)

The Pink Elephants Support Network: TFMR shared stories (posts)

Five stories from parents who ended their wanted pregnancies following prenatal diagnoses.

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