Curveball: Late Termination (podcast)
“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’.”
Cystic Fibrosis
Cystic Fibrosis organisations in Australia provide support and services to people with Cystic Fibrosis (CF) and their carers and families. This is complemented by a commitment to research and a quality improvement program focussing on improved clinical care for people with CF.
Every four days a baby is born in Australia with cystic fibrosis (CF) and more than one million Australians are carriers of cystic fibrosis. Cystic Fibrosis Australia (CFA) is committed to improving clinical practice and patient outcomes through its quality improvement programmes and research with the aim of extending life expectancy from 37 to 50 years by 2025.
Defiant Birth: Women who resist medical eugenics (book)
“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)
Down Syndrome Australia
Down Syndrome Australia is the national peak organisation for people with Down syndrome in Australia. We provide systemic advocacy on behalf of people with Down syndrome and their families. We work to create change and make sure people understand the experiences of people with Down syndrome and their families.
Services for expectant and new parents
When a baby with Down syndrome is born, parents need accurate and current information about Down syndrome. The Down Syndrome Federation provides support and information to new parents and expecting parents.
Here are some of the services that our state and territory associations offer parents and families.
Family support services
Information and advice about Down syndrome
Information about local support groups
A home visit
Connecting with another parent
New parent packs
Online support groups for parents
Membership with your local association
Workshops and webinars
Our national 1300 number (1300 881 935) will connect you to your local state or territory Down syndrome support organisation. The staff can help you find information, answer your questions and to arrange for you to meet another parent of a child with Down syndrome.
Duplication Cares
Supporting Individuals and Families Impacted by 7q11.23 Duplication
After diagnosis, families are not sure where to turn for answers. We’ve walked in your shoes and we can help.
Duplication Cares is committed to supporting families with children diagnosed with 7q11.23 Duplication Syndrome, as well as being dedicated to raising awareness in the medical community about the existence and treatment of this disorder.
By being a member of our support group, you will have access to other families who’ve been influenced by the duplication. You will be able to share ideas, concerns, and ask questions of our group. We support families around the world. You will also receive annual newsletters containing the latest information from families and professionals who assist 7q11.23 duplication individuals. Membership to the group is free.
Fabry Australia
Fabry Australia undertakes many activities, projects and programs to further support its membership. Some of which include;
The Fabry Australia website
The Fabry Australia Social Media page and Fabry Australia Group Page which is under ‘Secret’ setting respecting privacy of those individuals posting about medical and personal Fabry experiences. Social media enables us to interact and communicate with members in a way that traditional websites cannot. We use social media as a means of remaining transparent providing timely information to our members.
Fabry Australia Fabry Patient Meeting – see Events for upcoming meetings throughout Australia
Fabry Australia National Fabry Patient Conference – biannual 2 day conference
Fabry Australia Newsletter (E News) – sign up via the website link or email Fabry Australia directly.
Liaising with Pharmaceutical Industry
Fabry Australia Medical Advisory Committee
Fabry disease Advocacy
Fabry Australia Wellness Retreat
Fabry disease invited speaker meetings
Morning coffee meetings with individuals that are newly diagnosed with Fabry disease
Fabry disease research
Fabry Australia ‘FUNdraising’ activities
Fabry Awareness Month – April
Fotini’s story – The pain of terminating much wanted pregnancies (post)
“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
Fragile X Association of Australia
Fragile X Association of Australia is a member-based organisation which serves as the peak body for the Fragile X community across Australia.
We offer information, support, education, advocacy and referrals to individuals who are impacted by Fragile X-associated disorders and to their families, carers and health and disability service providers.
WE PROVIDE:
Helpline 5 days per week
Support to individuals and families
Counselling
Seminars and workshops
Information and referrals
Our small team of staff is based in Sydney and is supported by a Board of eight volunteer directors and other committed volunteers across the states.
Genetic Support Network Victoria (GSNV)
We seek to assist people with genetic conditions and those who support them including support groups, health professionals, non-health professionals, families, and the broader community. Our work focuses on our core pillars:
Education – Ensuring access to information and building awareness
Advocacy – Ensuring key messages are heard by the right people at the right time
Support – Everyone feels supported when they need it
We seek to connect people and families with support through our network.
We facilitate opportunities to share issues and develop collaborative solutions.
We provide direct support for individuals, families and support groups through a range of services including telephone support, referral, connection, listening etc.
Grief, acceptance and special needs parenting: it’s complicated (blog)
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.
Heart Kids
Finding out that your child or unborn baby has a heart condition can be overwhelming. HeartKids is here to support you.
Eight babies are born each day with a congenital heart disease. In most cases, the cause of congenital heart disease is unknown. Some children may also acquire a heart disease when they are young due to an illness or infection.
HeartKids has been working with and supporting families on their childhood heart disease journeys for over 40 years. We provide practical and emotional support for your family in hospital and in the community. We’re here to listen and to guide you to the right information and services.
Support offered:
Practical support such as financial assistance and travel subsidies
Emotional support such as professional mental health support and families programs
Peer support events, groups and mentors
Resources
Nova-Lee’s story (Blog)
“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
One Screened Every Minute (podcast)
“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.”
(Blurb from https://onescreenedeveryminute.com/about)
One Screened Every Minute: Belinda (podcast)
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.”
One Screened Every Minute: Chantelle (podcast)
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.
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: Kaisi (podcast)
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.”
One Screened Every Minute: Naomi & Al (podcast)
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: Sallie (podcast)
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.”
Osteogenesis Imperfecta Society of Australia
The OI Society of Australia was formed in 1977 with the three main aims being to:
- Offer information and support to individuals and families affected by O.I.
- Encourage and support research
- Provide public and professional education and create awareness.
These three aims continue to be our purpose and with the continued improvement in technology particularly electronic media we find that connecting people has become easier and the dissemination of information potentially more comprehensive. Our focus over the coming years will be to focus on raising awareness about OI and ensuring that people living with OI can access and fully participate in both our own activities and in the mainstream activities of society.
We will continue to hold a national conference on OI every two years; to drive and support Wishbone Day; and to promote and support educational events for schools, colleges, universities and medical professionals. This website seeks to be our link to these and the wider community.
Pieta’s story (article and journal article)
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)