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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.Read More

Episode 5 – Naomi and Al – ‘We had to have some hard conversations about whether to continue with the pregnancy.’

Naomi is a midwife and Al is an architect. 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.

Naomi and Al share what they have learnt about pre-natal screening as they’ve climbed, in their words, ‘the Everest of grief’.

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.”

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.Read More

Episode 4 – Chantelle – ‘It was a Friday afternoon, I received the call from the genetic counsellor, I was about to do school pickup. She just informed me that my blood test had come back and had shown abnormalities’.

Chantelle is a nurse and also runs her husband’s business. They have five children. Yes. Five. When pregnant with her youngest son she 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.

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.

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.”

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. Read More

Pieta’s Story (Gidget Angel article)

A story of a prenatal diagnosis, decision making and continuing pregnancy.

https://www.gidgetfoundation.org.au/stories/pieta-shakes

Mental health nursing and the prenatal diagnosis of a congenital anomaly; a narrative of experience (Journal article)

https://onlinelibrary.wiley.com/doi/full/10.1111/jpm.12645

“What is known on the subject

Many parents find out that their unborn baby has a difference in their health, development, or genetics.
This news is often unexpected and can be distressing and traumatic, which can lead to anxiety. There is a gap in support for parents.

What the paper adds to existing knowledge

This paper offers a story of the lived experience of the first-author, a mental health nurse who was told that her baby had a difference late in pregnancy.
The narrative moves through the anxiety and difficulties faced when falling between gaps in the systems.

What are the implications for practice

This paper identifies the need for more support for parents who receive a prenatal diagnosis.
This support is within the mental health nurse scope of practice across a range of settings and services.
People who have been given a psychiatric diagnosis have been excluded from other studies that explore the experience of the unexpected news of a congenital anomaly.
Research in this area is indicated.

Relevance to mental health nursing

Mental health nurses are well-positioned to address the gap in psychosocial support for parents who have received a prenatal diagnosis.
As clinicians who are recognized to deliver federally funded pregnancy support counselling, psychosocial support is within the mental health nurse scope of practice.
Some parents will require a higher level of support, assessment and intervention when they experience reactive mental illness or pre-existing mental illness is exacerbated.
Furthermore, people who have received a psychiatric diagnosis have been excluded from studies that explore the experience of receiving a prenatal diagnosis.
This exclusion has resulted in a gap in knowledge.”

(Blurb from https://onlinelibrary.wiley.com/doi/full/10.1111/jpm.12645)

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. This begins with speaking openly, and sharing the stories of empty arms.’ Some episodes feature stories of terminations for medical reasons.

Season 1 Episode 10 – Kristen (available here) – at Nicholas’ 20 week ultrasound, Kristen and her husband received life-altering news about his development. He was later born sleeping following a compassionate induction.
NB Not a first-person story, but Season 2 Episode 6 is a discussion with a sonographer around how they can engage in the process of delivering the terrible news of a baby’s death

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

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

“Having to make the decision to terminate a pregnancy can leave you feeling more isolated than ever. Being able to read the stories of others who have walked a similar path to you can go along way in helping you feel less alone.”

The Pink Elephants Support Network provides the latest resources, information and peer-support for anyone impacted by early pregnancy loss. Using evidence, empathy and connection, our unique digital-first approach offers a single source of specialist support, whenever and wherever it’s needed — for anyone who has directly experienced it, for family and friends, corporate partners or healthcare professionals seeking proven ways to help.

Their TFMR Shared Stories page includes written stories from five parents who have experienced a termination after a prenatal diagnosis.

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.Read More

Episode 198 – Annabel Bower – 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. Annabel also spoke of her pregnancy following her loss.

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.”

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.Read More

Prenatal diagnosis with pea friend Megan – Kate & Mandy talk with Pea friend Megan about the prenatal diagnosis she received when she was 14 weeks pregnant with her 4^th baby, and the absolute roller coaster that followed. Megan was told that her baby had a hydrops fetalis, which was not compatible with life. Her baby also had several chromosomal abnormalities that would mean severe disability if she would make it to term at all. But by 20 weeks, all the fluid retention had disappeared and there was no sign of hydrops fetalis, nor of a number of chromosomal abnormalities that were found earlier in the pregnancy. Her baby had ‘just’ Down Syndrome. She ended up having her baby girl at 37 weeks and after some time in the NICU, she is now a very happy 2 year old. What a journey.

Featured on Too Peas in a Podcast:
“Too Peas in a Podcast is a Podcast by Mandy Hose and Kate Jones.

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.”

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.Read More

“Still a Mum is a wholehearted book on grief and losing a baby that provides wisdom and support through careful insight, helping you feel less alone.

However, her short life left a big impact on her parents—and a network of strangers across the world as her story and the wisdom gained from the experience was shared and a successful fundraiser was created in her honour.

Written whilst on maternity leave—with no baby and planning her daughter’s memorial instead of a baby shower—and in the preceding year, the author offers healing awareness through a fractured heart which helps readers understand pregnancy loss and grief.

Still a Mum is a story about loss, life and love and finding joy again after heartbreak. Shining a spotlight on the stigma that still exists around pregnancy loss, not just for the parents but for other family members as well.”

From the website of Meagan Donaldson: Still a Mum

Stories and images from the CleftPALS family (PDFs)

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

CleftPALS NSW offer some stories by parents and an adult with lived experience of a cleft.

On the page, you will find that Sophie’s story and Zara’s story both start after their cleft was found at the mid-gestation scan.

https://cleftpalsnsw.org.au/index.php/stories/

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.Read More

“At first, Efrem and Blandina’s only concern with their pregnancy was getting back to Australia safely after finding out they were pregnant overseas.

They checked in with a doctor who told them that they’d be fine to return home. He asked to keep in touch.

Over the coming weeks, like any new parents, Efrem and Blandina started imagining their new exciting future.

But, things took a sharp turn after their standard 13-week ultrasound. Their little one, who they had nicknamed 4.3 after a funny misunderstanding in an earlier check-up, had a neural tube defect. This condition was incompatible with life – meaning either their much-loved baby would be stillborn, or have a very short and painful life.

They made the painful decision to terminate their pregnancy out of their deep love for their baby’s wellbeing.

While we often understand grief as a result of stillbirth or during childhood, we don’t often talk about or hear about the grief felt by many other parents.

Termination of pregnancy and miscarriage brings all of the same feelings of loss and devastation, as parents grieve for a baby they never had a chance to meet, and for a life they never had the chance to love. Red Nose supports many different types of families who have experienced many different types of loss.

To help cope with their grief, Efrem and Blandina have turned their story in a book of hope and healing. Not only did they find this therapeutic, they also hope it will help other parents who have to make one of the most difficult decisions a parent can face.”

Their story is available now as a download from the Red Nose Grief and Loss Support Library.

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.Read More

Source Kids has been developed to deliver important information to those caring for and working with these children and young individuals.

Source Kids is Australia’s first magazine for parents, carers, families, professionals and teachers working with children with special needs. Source Kids delivers the latest information on a range of topics that touch the lives of children with disabilities and their families and carers.

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

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."Read More

“Chayce James Phillipps-Lewis ~ 24/12/2020

First born child to Mark & Tayla Phillipps-Lewis.

Gone way to soon. Fly high baby boy x”

This is Chayce’s story, written by his mother, Tayla Lewis.

After receiving a prenatal diagnosis, Talya and Mark experienced a termination for medical reasons at 26 weeks in Victoria, Australia.

One Screened Every Minute (podcast)

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

“A podcast bringing you conversations with ordinary people who have received extraordinary information about chromosomal differences in their pregnancy.

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.”

(Blurb from https://onescreenedeveryminute.com/about)

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."Read More

“This is Nova-Lee’s short story.”

Nova-Lee had an unbalanced Atrioventricular Septal Defects (AVSD), hypoplastic left heart syndrome, coarctation of the aorta and a leaky valve. Her heart anomalies were only found at 29w+4d during a scan prompted by premature water rupture.

“We spent a week in Brisbane, more echo’s, meetings with cardiologists, social workers and also palliative care (comfort care). We spent all the time we could bed side. A decision no parent should have to make, we decided to return to Townsville on comfort care.”

“We speak of Nova-Lee Anne ALOT. We love her and miss her oh so much. She’s our little heart angel.”

Snippets from https://chaycen.com/post/nova-lees-story

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.Read More

“Finding out your unborn child has been diagnosed with a poor or fatal prenatal diagnosis is devastating news sure to reverberate through your family’s life forever. The emotional aspects of such a pregnancy and the practical implications of an adverse diagnosis are difficult to navigate.

The Prenatal Bombshell is a warm and understanding companion guide through the journey from diagnosis and beyond once you’ve decided to either continue or end your precious pregnancy.

Issues such as managing the pregnancy, delivery, termination, creating memories, future babies, and the long term impact of such a traumatic experience are all covered in detail.

The lived experiences of other women who have gone through this journey are also included to provide hope, support, and guidance through difficult times.

The Prenatal Bombshell does not attempt to convince women to make a particular choice about their pregnancy. It supports them from their choice onwards in a way that is honest, informative, and reliable. Filled with stories and testimonies, this is a helpful book to have during, and well beyond, a poor prenatal diagnosis.”

(Blurb from https://www.goodreads.com/book/show/25468233-the-prenatal-bombshell)

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.Read More

Too Peas in a Podcast is an Australian podcast hosted by Mandy Hose and Kate Jones, who chat, cry and laugh with each other and friends about parenting children with disabilities and additional needs.

Some specific episodes feature stories that include prenatal diagnosis:

Prenatal diagnosis with pea friend Megan – Kate & Mandy talk with Pea friend Megan about the prenatal diagnosis she received when she was 14 weeks pregnant with her 4^th baby, and the absolute roller coaster that followed. Megan was told that her baby had a hydrops fetalis, which was not compatible with life. Her baby also had several chromosomal abnormalities that would mean severe disability if she would make it to term at all. But by 20 weeks, all the fluid retention had disappeared and there was no sign of hydrops fetalis, nor of a number of chromosomal abnormalities that were found earlier in the pregnancy. Her baby had ‘just’ Down Syndrome. She ended up having her baby girl at 37 weeks and after some time in the NICU, she is now a very happy 2 year old. What a journey.
Twin pregnancy, twin to twin transfusion – Mandy and Kate talk about being pregnant with twins, the prenatal diagnosis of Twin to Twin Transfusion Syndrome and the scary reality of giving birth before your due date
Pea friend Alison – Kate & Mandy talk to super pea Alison. Alison speaks openly about her pregnancy with identical twins, the prenatal diagnosis of twin-to-twin transfusion, the birth of the twins at 27.4 weeks, the very worrying weeks and months after, and a kidney transplant which left her husband with a brain injury.

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.Read More

“To the newly bereaved parent,

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

A personal story by Zena Mason, after ending a very much wanted pregnancy and saying goodbye to her first baby, Chloe.

http://sandsaustralia.blogspot.com/2016/04/a-story-of-medical-termination-by-zena.html

Also shared by MamaMia

https://www.mamamia.com.au/ending-a-much-wanted-pregnancy-spina-bifida/

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.Read More

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

“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.”

Some episodes feature stories of prenatal diagnosis:

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
Episode 198 – Annabel Bower – Annabel Bower received a prenatal diagnosis of severe hydrocephalus at the 20 week scan of her fourth child and ultimately decided to end her wanted pregnancy.
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.
Episode 213 – Bianca Klingner-Walsh – At the age of 22, Bianca fell pregnant unexpectedly and 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 34 weeks via cesarean. Baby Oliver was born with a heart condition and spent 12 weeks in NICU before being transferred to Melbourne Children’s Hospital for life-saving surgery

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.Read More

Episode 213 – Bianca Klingner-Walsh – At the age of 22, Bianca fell pregnant unexpectedly and 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 34 weeks via cesarean. Baby Oliver was born with a heart condition and spent 12 weeks in NICU before being transferred to Melbourne Children’s Hospital for lifesaving surgery.

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.

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.Read More

“Defiant Birth tells the courageous stories of women who continued their pregnancies despite intense pressure from doctors, family members and social expectations. These women were told they shouldn’t have their babies because of a perceived imperfection in the child, or because their own disabilities do not fit within the parameters of what a mother should be. In the face of silent disapproval and open hostility, they have confronted the stigma of disability and had their children anyway.

Some of the writers tell of grave misdiagnosis, others of life-changing experiences, discovering the joy and love in children considered unworthy of life.

Melinda Tankard Reist dares to expose how eugenics is practised today, and how it is condoned, even expected, by mainstream society. More than ever before, doctors are diagnosing babies in the womb as less than perfect. But what if the ‘cure’ they offer will end the child’s life?”

(Blurb from https://www.spinifexpress.com.au/shop/p/9781925581911)

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stories of prenatal diagnosis

Search the directory

One Screened Every Minute: Naomi & Al (podcast)

One Screened Every Minute: Chantelle (podcast)

Pieta’s story (article and journal article)

Pieta’s Story (Gidget Angel article)

https://www.gidgetfoundation.org.au/stories/pieta-shakes

Mental health nursing and the prenatal diagnosis of a congenital anomaly; a narrative of experience (Journal article)

“What is known on the subject

What the paper adds to existing knowledge

What are the implications for practice

Relevance to mental health nursing

The Still Mama Tribe Podcast (podcast)

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

Australian Birth Stories: Annabel Bower (podcast)

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

Still a Mum by Meagan Donaldson (Book)

Stories and images from the CleftPALS family (PDFs)

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

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

Chayce’s Story (blog)

One Screened Every Minute (podcast)

Nova-Lee’s story (Blog)

The Prenatal Bombshell (book)

Too Peas in a Podcast (podcast)

A Story of a Medical Termination by Zena (Blog)

Australian Birth Stories (podcast)

Australian Birth Stories: Bianca (podcast)

Defiant Birth: Women who resist medical eugenics (book)