| |  | Some news! | Catch up on the some news about Through the Unexpected and the wider happenings related to the experience and psychosocial aspects of prenatal diagnosis. | |  | Prenatal diagnosis, mentioned in practice guidelines | We are delighted to announce, for the first time, the experience of prenatal diagnosis is recognised in the Australian Clinical Practice Guideline: Mental Health Care in the Perinatal Period. While reference to prenatal diagnosis remains limited, we consider this a significant step in the right direction.
This addition is a direct result of our advocacy as an organisation and the efforts of our community of people who have experienced a prenatal diagnosis or work with those who have. Through the Unexpected submitted a response within the Guideline consultation period, and many of our recommendations were subsequently included in the final Guideline. The guidelines will be updated in another four years time, and we will be ready to advocate for a section specific to supporting the psychosocial health and wellbeing of parents who receive a prenatal diagnosis of a fetal anomaly or difference. | | Meet our newest Director, Susannah |  |
| With over 25 years dedicated to providing administrative, executive, and board support, primarily within the not-for-profit sector, Susannah is deeply committed to fostering integrity, innovation, openness, and emotional intelligence in both professional and personal realms. As a perpetual learner, she thrives on embracing opportunities for continuous growth and self-improvement.
Her expertise spans a wide spectrum of administrative functions, and more recently, an expanded focus encompassing crucial domains such as regulatory and standards compliance, corporate social responsibility, and effective company secretarial work.
Susannah has lived experience of journeying through the unexpected following a prenatal diagnosis and is now close to being an empty nester, with three of her four children having flown the coop, leaving her home with one very hungry teenage son, an affectionate golden retriever and a bossy ginger tabby cat. |
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| | Research study - now online! | In our last edition of Some News, we shared our new research project, led by James Cook University: Co-producing training resources for health and allied health professionals.
In response to the the many parents who emailed and expressed their interest, yet couldn’t participate as the focus groups were to be eld in Melbourne, the team sought and received ethics approval to change to study to online participation! Along with this change, the team were also able to extend the eligibility criteria!
This means, mothers, fathers and other parents who meet the extended eligibility criteria will now be able to participant from the comfort of their own homes, via Teams. |  | To learn more about the opportunity you can watch the video or download and read the study flyer or Participant Information Sheet. To express your interest, please email pieta.shakes@jcu.edu.au | | | | | Thank you, Art Helps Heaps!
Art Helps Heaps aims to make creativity accessible to everybody through a sustainable and long term approach to collaboration, and in the process do good and raise awareness of genetic disorders and rare diseases. Art Helps Heaps is Kieran and Skye Burke, the father and mother of a child who was born with multiple rare genetic disorders and associations.
We thank Art Helps Heaps for their wonderful donation! The donation received from Art Helps Heaps is being directed to the suite of parent information resources we are developing, to help parents feel informed and empowered through the unexpected. | |
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| |  | Perinatal Mental Health Week is rapidly approaching and we are excited!
Last year, we the joined 45 organisations involved in the Perinatal Mental Health Week campaign, but this year will be even more special.
This year, people who receive a prenatal diagnosis will be visible for the first time!
We have collaborated with the Perinatal Mental Health Week team to develop specific resources.
To make it even more exciting, we will launch our new parent resources during Perinatal Mental Health Week! These resources have been crafted by professionals, therapists and people with lived experience, so that we can help parents find the information they need to feel empowered through the unexpected. | | A little help from… |  | Through the Unexpected sponsored a print run of the incredible companions and they are currently on the way to us. We will offer these resources free for parents who experience pregnancy and baby loss. |
| ‘A Little Help from Jack’ is a practical resource companion developed by Emily Judd and Nick Waldron for those who are navigating the challenging journey of pregnancy and baby loss. This heartfelt initiative was born out of their own experience and serves as a comprehensive guide, offering curated collection of resources & keepsakes to provide support during these difficult circumstances.
In addition to ‘A Little Help from Jack,’ Emily and Nick collaborated with Meagan Donaldson (Author of Still a Mum) to create ‘A Little Help from Remy,’ a companion specifically designed for families coping with termination for medical reasons (TFMR). Together, these companions serve as invaluable tools, offering a wealth of information to assist bereaved families on their path of healing.
Within these companions, there is a range of valuable resources, including helpful organisations, books addressing baby loss and grief, sibling resources, podcasts, and meaningful keepsakes such as jewellery, artwork, memory boxes, and baby loss journals.
By collating these resources in the once place, the companions alleviate the burden of endless searching and ensure that families and their support networks can easily access relevant information in their time of need. |
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| | Facing the Unexpected project update | Our three year project, Facing the Unexpected, continues to progress. Since our last update, we have: Gained ethics approval to swap to online focus groups for our study with parents with lived experience of receiving a prenatal diagnosis and started recruiting parents, Presented our training project at two professional conferences: Australasian Marcé Society and Helen Mayo House in Adelaide, International Mental Health Nursing Conference in Melbourne.
Met with new collaborators, both individuals and organisations, and Secured our online Learning Platform: We know the learners who complete our microcredential program will be diverse, and we know the value in learners connecting and sharing their expertise. Therefore, on top of our need for a platform that allowed multimedia content and engaging activities, we also sought a platform that invites collaboration and allows networks. It’s exciting to reach each milestone in this three-year project, funded by The Liptember Foundation. We will soon open the online platform to the many collaborators, where we can continue the co-design process.
| | Coming events and important datesIf you know of any other important dates coming soon, please email info@throughtheunexpected.org.au |  | | Further advocacy | Continuing our advocacy, Through the Unexpected submitted a response to the NSW Select Committee on Birth Trauma. This inquiry attracted over 4000 submissions, therefore, we can’t be sure that prenatal diagnosis will feature in the final report. However, our growing connection with birth trauma researchers and support organisations, may open further doors for prenatal diagnosis to be recognised and addressed. | | Recently published
A snapshot of recent literature from Australia and around the world related to the experience of prenatal diagnosis and psychosocial outcomes. Azri, S., Wyder, M., & Cartmel, J. (2023). Addressing Women’s Psychosocial Needs Following an Adverse Prenatal Diagnosis: Qualitative Findings Inform SARF Model Development. Australian Social Work, 1-12. https://doi.org/10.1080/0312407x.2023.2193831
Eagleson, K. J., McCombs, D., Gerlich, T. M., Justo, R. N., Kasparian, N. A., & Bora, S. (2023, Jul 5). Systematic Review of Instruments Assessing Psychosocial Adaptation and Outcomes Among Families of Children With Congenital Heart Disease. J Pediatr Psychol, 48(6), 537-552. https://doi.org/10.1093/jpepsy/jsad015
Long, S., O'Leary, P., & Dickinson, J.E. (2023). Western Australian women's expectations for expanded NIPT: An online survey regarding NIPT for single gene, recessive and chromosomal conditions. J Genet Couns. https://obgyn.onlinelibrary.wiley.com/doi/abs/10.1111/ajo.13608
Loughry, L., Pynaker, C., White, M., Halliday, J., & Hui, L. (2023). State-wide increase in prenatal diagnosis of klinefelter syndrome on amniocentesis and chorionic villus sampling: Impact of non-invasive prenatal testing for sex chromosome conditions. Prenat Diagn, 43, 156-161. https://obgyn.onlinelibrary.wiley.com/doi/full/10.1002/pd.6103
Mangin-Heimos, K. S., Strube, M., Taylor, K., Galbraith, K., O'Brien, E., Rogers, C., Lee, C. K., & Ortinau, C. (2023, Apr 20). Trajectories of Maternal and Paternal Psychological Distress After Fetal Diagnosis of Moderate-Severe Congenital Heart Disease. J Pediatr Psychol, 48(4), 305-316. https://doi.org/10.1093/jpepsy/jsac067
Psaila, K. M., Schmied, V., & Heath, S. (2023, Jul 6). Exploring continuity of care for women with prenatal diagnosis of congenital anomaly: A mixed method study. J Clin Nurs. https://doi.org/10.1111/jocn.16777
Wilkes, C, Graetz, M, Downie, L, Bethune, M, Chong, D. (2023). Prenatal diagnosis of cleft lip and/or palate: what do we tell prospective parents? Prenat Diagn, 43(10), 1310-1319. https://doi.org/10.1002/pd.6418
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