stories of prenatal diagnosis - Through the Unexpected

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 One Screened Every Minute: Sallie (podcast)

One Screened Every Minute: Sallie (podcast)

In this episode Sallie talks about decision making following a prenatal screening result showing a high chance for Trisomy 21 or Down syndrome when she was pregnant with her eldest child Oskar. She and her husband Josh decided to decline invasive screening and continued the pregnancy.

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 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 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: 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 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 Australian Birth Stories: Nadia (podcast)

Australian Birth Stories: Nadia (podcast)

Nadia’s first son, a boy named Pio, was diagnosed with a rare chromosomal abnormality and was born via cesarean at 20weeks. She discusses her disbelief at the diagnosis and the subsequent grief of her loss followed by the healing arrival of her rainbow baby, Riviera.

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 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 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 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 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 A Story of a Medical Termination by Zena (Blog)

A Story of a Medical Termination by Zena (Blog)

To the newly bereaved parent,

Please know that you’re not alone. I want to share my story of medical termination.

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 Two Peas in a Podcast: Prenatal Diagnosis with Pea Friend Megan (podcast)

Two Peas in a Podcast: Prenatal Diagnosis with Pea Friend Megan (podcast)

Kate & Mandy talk with Pea friend Megan about the prenatal diagnosis she received when she was 14 weeks pregnant with her 4th baby, and the absolute roller coaster that followed.

Photo of Australian Birth Stories: Annabel Bower (podcast)

Australian Birth Stories: Annabel Bower (podcast)

Annabel Bower received a prenatal diagnosis of hydrocephalus at the 20 week scan, after a hemorrhage in utero. Annabel spoke of her need to change medical providers in order to receive the support and information she needed, before delivering her son Miles early and saying goodbye.

Photo of One Screened Every Minute: Kaisi (podcast)

One Screened Every Minute: Kaisi (podcast)

Kaisi received a non-invasive prenatal screening result showing a high chance for Trisomy 18 or Edward’s Syndrome. This result came soon after she lost a twin who was stillborn. After many months of having the pregnancy monitored and gathering information, the couple chose to terminate.

Remembering Juniper [blog post]

The story of baby Juniper who was found to have a rare severe disease and at 20 weeks and 4 days, was born sleeping.

Photo of Pieta’s story (article and journal article)

Pieta’s story (article and journal article)

Pieta read her ultrasound report at 31 weeks to find her baby’s brain had developed in an unexpected way. Pieta has shared her story as a Gidget Angel and written a journal publication.

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