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 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 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.

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.

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 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 Remembering Juniper [blog post]

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 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 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 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 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 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 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 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: 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 (podcast)

Australian Birth Stories (podcast)

A weekly podcast hosted by Sophie Walker, which showcases women’s first-hand accounts of their pregnancy and childbirth experiences in Australia. Some episodes feature stories of prenatal diagnosis.

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 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 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 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.

Photo of Chayce’s Story (blog)

Chayce’s Story (blog)

This is Tayla and Mark’s story of prenatal diagnosis, TFMR at 26 weeks and birth, and this is Chayce’s story of the love and meaning her brought. “Chayce was here. Chayce was rare. Chayce will make some kind of a difference.”

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