Submission to the inquiry into the Thriving Kids initiative
Thursday 2nd October 2025
Thank you for the opportunity to make a submission to the House of Representatives Standing Committee on Health, Aged Care and Disability’s Inquiry into the Thriving Kids Initiative. We welcome the Committee’s attention to effective national support for parents and children and appreciate the opportunity to contribute.
Through the Unexpected is a national, registered health promotion charity that works to protect the mental wellbeing of people who receive unexpected news about the health, development or genetics of their unborn baby. The experiences of pregnant women, partners and families who receive an increased-chance finding on prenatal screening or a prenatal diagnosis of a fetal anomaly are grossly overlooked. There is a critical gap in national health policy, which has resulted in hidden harms, missing data, and inequitable care. Despite public funding for prenatal screening and national guidelines recommending that all pregnant women be offered screening tests, care pathways after a prenatal diagnosis are lacking.
Thriving Kids presents a unique opportunity to effect significant change for parents who receive unexpected news about their unborn baby and continue their pregnancy. Some parents who continue pregnancy may receive support through perinatal palliative care services, if and when connected. Some families with expectant infants with anomalies that require surgery may access some continuity of care, however, many other parents fall through gaps and receive no specialist support or care after the decision to continue pregnancy.
Parents who receive unexpected news about the health, development, or genetics of their unborn baby often experience acute distress and traumatic stress that can endure long after birth.1 A large study in a US fetal care centre found that more than one in four parents had elevated traumatic stress scores one month after diagnosis — this was despite access to trauma-informed care and continuous psychosocial support from a multidisciplinary team, which included are coordination, mental health assessments and therapeutic interventions to support adaptation.2 We do not have comparable services in Australia that integrate therapy to support coping and adaptation, and thus, it is plausible to consider the potential for a higher incidence of traumatic stress and subsequent post traumatic stress disorder.
A prenatal diagnosis can trigger the threat response as mothers try to process what the news means for their baby, family and future.3 Care after a diagnosis can become medically-orientated, where a focus is placed on the anomaly or difference, where parents who continue pregnancy can experience fragmented and inequitable care, stigma and assumptions.4 This can, at times, be a space of defensive practice, where care is influenced by the threat of ‘wrongful birth’ claims – when parents sue after birth if they weren’t informed of the extent of the diagnosis and prognosis. Such circumstances can mean professionals feel compelled to continually present the ‘worst case scenario’, which subsequently perpetuates the threat experienced by parents.
Without parent-centred, trauma-informed support during pregnancy, families are left isolated, their distress unrecognised, and their capacity to adapt diminished.3 Our current systems can compound harm, as we fail to address the psychosocial support needs after a prenatal diagnosis. While a diagnosis can be traumatising, for some, a diagnosis is accepted, and yet the experiences of care can become traumatising.
Unmet psychosocial need has consequences not only for parents, but also for babies:
- Maternal psychological distress during pregnancy alters fetal brain development and influences neurodevelopment, which can lead to worse physical and mental health outcomes,5 and
- Against expectations, a Melbourne-based study found infants prenatally diagnosed with transposition of the great arteries had poorer outcomes after surgery than the group postnatally diagnosed, resulting in more preterm births and longer intensive care and hospitalisation. The authors suggested iatrogenic harm of distress may be the cause.6
These findings highlight that trauma in pregnancy is not only an emotional burden, but can directly shape child development, wellbeing, and long-term outcomes. Failure to support adaptation during pregnancy also complicates the postnatal period and increases costs to the health system - for example, repeated emergency visits for typical infant behaviours misinterpreted as seizures due to unresolved parental fear when remaining in a perpetual state of threat.
Thriving Kids rightly recognises the importance of supporting children and families for the best possible start in life. However, commencing support only from birth misses a key stage in development – pregnancy.
The recent National Best Practice Framework for Early Childhood Intervention highlights the importance of supporting parents to have positive views about their child’s strengths developmental progress and functioning, and the knowledge, skills and confidence to support their child’s and family’s quality of life. To achieve the vision of The Early Years Strategy, “all children in Australia thrive in their early years”, and the aims of Thriving Kids, it is imperative to start supporting families from diagnosis. Some children may progress to supports through the NDIS, while other families may be well supported through a successful national intervention such as Thriving Kids.
Individualised, culturally sensitive and responsive parenting support to adapt to a prenatal diagnosis has the potential to buffer some of the iatrogenic harm that may come with fragmented, deficit and symptom-focused care. Support to help parents adapt, learn more, build connections and embrace their new baby will help progress towards the aim of such publicly funded prenatal screening programs, preparation.
Parents who continue pregnancy after a prenatal diagnosis are currently not well supported in any other program. National pregnancy guidelines and perinatal mental health guidance do not include care recommendations for after a prenatal diagnosis.7 State and territory-based health policy also overlooks the aftermath. The NSW Birth Trauma Inquiry led to recommendations for trauma-informed approaches, ample time and psychological support, which were supported by the NSW Government; however, the policy directive cited as a demonstration towards such support failed to include care recommendations for after a diagnosis. In fact, this policy directive8 was amended in 2024, during which time specific psychosocial-focused content was removed. Prior content noted the potential for dilemmas, including the possibility that a diagnosis may precipitate a crisis that can impede information processing. Additionally, it highlighted that ultrasound is routinised, which can threaten informed consent. Furthermore, the prior policy directive emphasised that counselling must be free from coercion and that emotional support is required. These details are no longer included, increasing the potential for harm and unmet support needs after nationally funded tests.
While Australians can access Medicare-funded items for prenatal screening, this isn’t included in population screening programs, and therefore, we do not routinely collect data or monitor outcomes and impacts. The policy gap is widening as prenatal screening continues to expand nationally, with additional MBS items for tests that don’t cover the aftermath. Information is becoming more complex, more uncertain9, and offered earlier in gestation, which is highly valuable for reproductive
decisions, but potentially harmful for a baby in a continued pregnancy. In such pregnancies, the focus on the diagnosis can overshadow the baby and threaten attachment. Instead, without explicit policy recognition and the investment in services, education and research, families have been falling through the cracks, experiencing inequitable, fragmented, and sometimes absent care. These unintended consequences will only continue to grow and impact more families. Furthermore, there are unintended consequences for professionals, too, where there are expanding clinical complexities in under-resourced systems.10
By explicitly including families who continue pregnancy after a prenatal diagnosis within Thriving Kids, we can reduce preventable harm, support adaptation, and provide equitable access to skilled psychosocial and family-focused support at such a critical moment – we can change futures. We can support adaptation and preparation, working towards a space where parents feel well-connected, informed about potential developmental care needs, hopeful, and ready to welcome their new baby into the world.
Inclusion of unborn babies with a congenital anomaly also aligns with wider national policy, such as the National Preventive Health Strategy 2021-2030, which includes the prenatal period, Priority areas 1 and 4 of the National Women’s Health Strategy 2020-2030, and the overarching Pillar 3 of Australia’s Long Term National Health Plan. Inclusion will bring attention to the specific needs of families at this time and encourage current services to educate staff on meeting unique needs, establish referral pathways, and collect data.
We have recently launched the first Australian learning and networking platform dedicated to the psychosocial aspects of prenatal diagnosis. Thus, we can offer education and connection to strengthen the capacity of existing services and professionals to support the needs of parents who continue their pregnancy after a prenatal diagnosis. However, this is unlikely to happen when programs continue to overlook this niche (but not uncommon) experience through the unexpected.
Thriving Kids presents a unique opportunity to enable so much change at the outset of a new program – overlooking this potential will have enduring consequences for families and result in greater health and care system utilisation. Furthermore, future efforts to address the psychosocial, care coordination and adaptive needs of families will be disconnected from current initiatives, and thus, require much greater financial investment.
We respectfully urge you to include families who have received a prenatal diagnosis and are continuing pregnancy in Thriving Kids. The Thriving Kids Advisory Group can make such a difference to this group of families – to really offer the best chance for all children in Australia to thrive in their early years. We welcome the opportunity to provide further evidence and to connect the committee with parents and professionals who can speak directly to the importance of this issue.
Yours sincerely,
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Dr Pieta Shakes – Executive Director of Through the Unexpected.
- Oftedal A, Bekkhus M, Haugen GN, Czajkowski NO, Kaasen A. The impact of diagnosed fetal anomaly, diagnostic severity and prognostic ambiguity on parental depression and traumatic stress: a
prospective longitudinal cohort study. Acta Obstetricia et Gynecologica Scandinavica. 2022;101(11):1291-9. 2. Cole JCM, Zajac L, Budney A, Schindewolf E, Spinner S, Teefey CP. Implementation of trauma-informed care strategies in a comprehensive maternal-fetal care center. Psychological Trauma. 2024. 3. Shakes P, Cashin A, Hurley J. Threat and adaptation: The maternal lived experience of continuing pregnancy after receiving a prenatal diagnosis of agenesis of the corpus callosum. Social Science & Medicine. 2023;339:116391. 4. Down Syndrome Australia. “We all have a lot to learn.” Prenatal screening for Down syndrome: A discussion paper. 2021. 5. Kasparian NA. Heart care before birth: A psychobiological perspective on fetal cardiac diagnosis. Progress in Pediatric Cardiology. 2019;54:101142. 6. Namachivayam SP, Butt W, Brizard C, Millar J, Thompson J, Walker SP, et al. Potential benefits of prenatal diagnosis of TGA in Australia may be outweighed by the adverse effects of earlier delivery: likely causation and potential solutions. Archives of Disease in Childhood. 2023. 7. Shakes P, Johnson B, Maylea C. Gaps in psychosocial care guidance related to prenatal diagnosis: A safety and quality issue. . Journal of Paediatrics and Child Health. 2023;59:45. 8. Agency for Clinical Innovation. Prenatal screening and diagnostic testing for fetal chromosomal abnormality. 2024. 9. Drysdale K, Scully JL, Kint L, Laginha KJ, Hodgson J, Holmes I, et al. The salience of genomic information to reproductive autonomy: Australian healthcare professionals’ views on a changing prenatal testing landscape. New Genetics and Society. 2024;43(1). 10. Johnson B, Shakes P, Maylea C. Prenatal testing technologies in Australia: Unintended clinical and emotional complexities in underprepared systems. Social Science & Medicine. 2024;361:117368.
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