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stories of prenatal diagnosis

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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 collated the stories of parents, who share such moments of love, fear, heartbreak, and hope.

Please know:

  • These stories appear in random order.
  • Stories which help one person, may be unhelpful for another.

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.Read More

Episode 3 – Kaisi – ‘What does this diagnosis actually mean for us? What does it mean for this little baby?’ Kaisi received a non-invasive prenatal screening result showing a high chance for Trisomy 18 or Edwards’ 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. Kaisi is a teacher and now a busy mum to two young daughters but as she’ll explain, her path to parenthood hasn’t been straightforward.

 

Featured on One Screened Every Minute:
“A podcast bringing you conversations with ordinary people who have received extraordinary information about chromosomal differences in their pregnancy.

Prospective parents are increasingly encouraged to seek relief and reassurance earlier in pregnancy through non-invasive prenatal screening (NIPT). But what if the results are unexpected? What if they raise more questions than answers?

In this first series, host Elizabeth Callinan speaks with Sallie, Kaisi, Chantelle, Naomi and Al and Belinda about how they navigated the options available to them after screening results showed a high chance of chromosomal differences.

These stories are shared so we can learn but not judge and as non-invasive prenatal screening is becoming a routine part of pregnancy, they need our urgent attention.”

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.Read More

Episode 6 – Belinda ‘If you choose to continue, you will have these people who will say ‘why didn’t you terminate?’ and pass judgement. And if you terminate, you will have people pass judgement and say ‘how could you do that?’’

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.

 

Featured on One Screened Every Minute:
“A podcast bringing you conversations with ordinary people who have received extraordinary information about chromosomal differences in their pregnancy.

Prospective parents are increasingly encouraged to seek relief and reassurance earlier in pregnancy through non-invasive prenatal screening (NIPT). But what if the results are unexpected? What if they raise more questions than answers?

In this first series, host Elizabeth Callinan speaks with Sallie, Kaisi, Chantelle, Naomi and Al and Belinda about how they navigated the options available to them after screening results showed a high chance of chromosomal differences.

These stories are shared so we can learn but not judge and as non-invasive prenatal screening is becoming a routine part of pregnancy, they need our urgent attention.”

 

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.Read More

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.

https://www.theguardian.com/lifeandstyle/2021/nov/14/choosing-termination-baby-foetal-anomaly

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.Read More

Episode 2 – Sallie – ‘We were such a different couple getting that diagnosis . . . To be at those crossroads is a very very different thing.’

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.

 

Featured on One Screened Every Minute:
“A podcast bringing you conversations with ordinary people who have received extraordinary information about chromosomal differences in their pregnancy.

Prospective parents are increasingly encouraged to seek relief and reassurance earlier in pregnancy through non-invasive prenatal screening (NIPT). But what if the results are unexpected? What if they raise more questions than answers?

In this first series, host Elizabeth Callinan speaks with Sallie, Kaisi, Chantelle, Naomi and Al and Belinda about how they navigated the options available to them after screening results showed a high chance of chromosomal differences.

These stories are shared so we can learn but not judge and as non-invasive prenatal screening is becoming a routine part of pregnancy, they need our urgent attention.”

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.Read More

Episode 92 – Sarah Jade – after a long and traumatic 33 weeks of pregnancy, Sarah let go of her second child Aksel, who had severe brain malformations. NB the first 40 minutes of this episode talk about Sarah’s traumatic birth experience with her first child

Featured on Australian Birth Stories:

“With over 4.7 million downloads, at ABS we want to educate and inform, but we also just want to share your stories, with no judgement and lots of heart.

This is a podcast for first-time pregnant people, parents wanting to have better subsequent births, and birth enthusiasts who love to hear and tell birth stories. Entertaining, heartfelt, emotional and informative.”

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. Read More

A podcast for families caring for a child who is dying

“This podcast series focuses on the experience of parents of children who have died or are likely to have a short life. Despite advances in health care, children and young people still sadly die from a range of life limiting conditions. The parents in this series have been supported by palliative care teams to face multiple challenges in caring for their children. These parents bravely share the love and beauty of their children and the joy and sadness of their individual experiences. They hope their voices can support, inform, and better prepare other families who may need to face similar challenges.”

The link will open to the suite of podcasts.

Season 2, Episode 2: The heartbreak of perinatal and infant loss features two mothers who received life-limiting prenatal diagnoses and share their stories of moving through perinatal palliative care.

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.Read More

Episode 206 – Nadia – Nadia’s first son, a boy named Pio, was diagnosed with a rare chromosomal abnormality (triploidy) and was born via cesarean at 20 weeks. She discusses her disbelief at the diagnosis and the subsequent grief of her loss followed by the healing arrival of her subsequent children.

Featured on Australian Birth Stories:
With over 4.7 million downloads, at ABS we want to educate and inform, but we also just want to share your stories, with no judgement and lots of heart.

This is a podcast for first-time pregnant people, parents wanting to have better subsequent births, and birth enthusiasts who love to hear and tell birth stories. Entertaining, heartfelt, emotional and informative.”

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…"Read More

“Special is an uplifting, candid companion for those in the early stages of navigating a child’s disability, offering honest, reassuring and relatable insight into a largely unknown (and so, initially terrifying) part of our world.

It features antidotes to the obsessions at the forefront of a newly minted special-needs parent’s mind: Why has this happened to me? Will I ever stop comparing my child to typical children? How will my relationship survive? Will I be able to work again? Should I have another baby? And the big one: What will my future look like?

Inspired by the author’s own crash-landing into special-needs parenthood, and shaped by her conversations with parents of children with wide-ranging disabilities, alongside specialists, psychologists and researchers, Special shares stories, guidance and simple coping strategies to soothe and surprise anyone whose life has taken an unexpected turn.”

(Blurb from https://www.venturapress.com.au/special)

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.Read More

“My name is Fotini, mum to my angel babies Bruce and Blake.

It’s been just over ten years since my first termination for medical reasons (TFMR), and while a decade is quite some time, I still remember the moment like yesterday.”

Fotini shared her experience of undergoing two terminations for medical reasons.

https://rednose.org.au/news/fotinis-story-the-pain-of-terminating-much-wanted-pregnancies

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. Read More

” I wanted to share our story, firstly to honour the life and death of our daughter, Juniper Alice. Her story deserves to be told. I also wanted to share our experience, in case any of our friends ever go through something similar in the future”

https://www.gps-can.com.au/the-stories/remembering-juniper

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.Read More

“Excited about your growing baby and the new addition to your family, until the unthinkable, when you learn your baby is severely compromised. Suddenly you are faced with an unbearable decision. Three brave mothers open up and share their deeply traumatic experiences—an incredibly moving and life-affirming episode.”

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

Trigger warning: this episode contains language about disability some listeners may find distressing

 

Featured on Curveball:
“An Australian podcast hosted by Beth Armstrong ‘about life’s unexpected moments, with a black comedy tell-it-like-it-is approach’.”

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