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: 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 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 Curveball: Late Termination (podcast)

Curveball: Late Termination (podcast)

In the Late Termination episode, Beth chats with three mothers who each received a prenatal diagnosis and decided to end their wanted pregnancies.

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 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 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 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 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 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 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 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 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 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 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.

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

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

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 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.

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 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.

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