Submission 277 — Miracle Babies Foundation — Inquiry into the Thriving Kids initiative | External submission

miracle babies
FOUNDATION
24 Hour Family Support Helpline 1300 622 243
National Head Office 02 9724 8999
8/30 Heathcote Road, Moorebank NSW 2170
PO Box 95 Moorebank NSW 1875
www.miraclebabies.org.au

2 October 2025

Miracle Babies Foundation is Australia’s leading not-for-profit organisation committed to improve, support and enhance all lives impacted by a premature or sick birth. Please accept our submission to the Inquiry into Thriving Kids Initiative.

Every year in Australia, more than 48,000 newborn babies require care in a neonatal unit. The need for care is either from being born prematurely or being critically ill. 15,000 of these babies are born in New South Wales.

Many premature babies go on to have lifelong disabilities including, but not limited to, cerebral palsy, heart disease, respiratory problems, seizures and epilepsy, congenital anomalies and learning difficulties. Children born preterm are more likely to develop ADHD symptoms and receive an ADHD diagnosis compared to children born at term. Preterm birth can disrupt neurodevelopment, potentially leading to difficulties with attention, inhibition, and executive control. A recent study concluded that ‘preterm and early term birth were associated with increased risk of ASD in males and females. These associations were largely independent of covariates and shared familial factors, consistent with a potential causal relationship.’ https://pmc.ncbi.nlm.nih.gov/articles/PMC9809198/

Mental health challenges are experienced by many parents who endured the emotional and stressful birth of a premature or sick baby. This mental health risk is exacerbated by a lack of support for their child with additional needs, such as those listed above. The early perinatal period for parents can be filled with fear, guilt, stress, and grief. There is extensive research literature supporting that parents of preterm babies are at least two and a half times more likely to experience postnatal depression, and there is also a higher rate of post-traumatic stress disorder, in both parents, when baby is 12 months of age.

On the birth of a baby born requiring specialised care, a key driver of mental health trauma is often separation between parents and their baby. Evidence shows that keeping mother and baby together reduces these adverse parental outcomes, which could impact their baby’s long-term development and the child’s mental health. At the same time, mental health implications can be long term for parents. Zero Separation improves the baby’s chances of survival and improves the bonding of baby and parents whilst helping to reduce their mental health and improve wellbeing.

Challenges to families are not limited to the NICU. Families who experience an early birth grieve the loss of those social experiences and events anticipated during their hoped-for experience of a good pregnancy. For example; the baby shower, gender reveal, homecoming celebration and others. The weeks or months after birth are then a lonely and isolating experience. It is lived mostly without

extended family and friends. Rather than the celebration of a healthy new life and a welcoming of a baby into the family this time is filled with fear, anxiety, isolation and a lack of parental confidence taking a new baby home without the support of medical professionals who have been a guidance and safety net since the birth.

1. Impacts to Mental Health on parents and outcomes for Infants

Parents of extreme preterm babies are two-and-a half times more likely to suffer post-natal depression.¹ Birthing a premature or sick baby also places parents with an existing mental health condition or neurodiversity at risk of exacerbating their condition.

The report, Investing to Save – The Economic Benefits for Australia of Investment in Mental Health Reform developed in association with Mental Health Australia, states that by intervening early, we can achieve positive health and social outcomes for people experiencing mental illness, while also delivering economic returns to the government and economy at the same time – avoiding significantly higher costs in the future.

They conclude that ‘(not only) will interventions save governments and their partners money in the long run…there is clear evidence to support the lives of people with mental health issues, their families, their friends and their communities will improve.’² This is exactly what we aim to achieve at Miracle Babies; improved outcomes and the opportunity to thrive for parents and families facing trauma and poor mental health associated with the birth of a premature or sick baby. Access to peer support from Miracle Babies Foundation in the critical care period will assist these families and can also assist the economy by providing a preventive solution for this community, potentially saving the government expenses of over $40million each year, if we were able to reach and support the 63,000 parents and 31,500 children at high-risk each year (based on $431 per person).

Investing to Save also suggests that for every dollar invested by government in organisations like Miracle Babies, there could be ‘…longer term savings of up to $10 for every dollar invested. This highlights that there are significant gains to be made, particularly when targeted interventions are applied early…’³

The benefit of peer-support in the NICU environment is highlighted in this article from the Journal of Perinatology; ‘There is now a growing body of evidence of the benefits that peer support provides to parents of NICU infants and special needs children. Parents who receive peer support have been found to have increased confidence and well-being, problem-solving capacity and adaptive coping, perception of social support, self-esteem and acceptance of their situation. Further, parents feel more empowered and interact with, nurture and care for their infants to a greater degree during more frequent visits to the hospital, leading to a shorter length of stay for their infants. Parental stress and anxiety, as well as

¹ Pace CC, Spittle AJ, Molesworth CM, Lee KJ, Northam EA, Cheong JL, Davis PG, Doyle LW, Treyvaud K, Anderson PJ. (2016) Evolution of Depression and Anxiety Symptoms in Parents of Very Preterm Infants During the Newborn Period. JAMA Pediatr; Vol 170, Issue 9, p. 863-70. ² Belfield G, Rynne B (2018) Investing to Save The Economic Benefits for Australia of Investment in Mental Health Reform, Mental Health Australia and KPMG ³ Belfield G, Rynne B (2018) Investing to Save The Economic Benefits for Australia of Investment in Mental Health Reform, Mental Health Australia and KPMG

depression, are all reduced. Peer support therefore offers a ‘legitimate’ and ‘unique form of assistance that is not typically met by the formal service system’ and one that cannot come from any other source.’ ⁴

Prevalence and risk factors for postpartum depression among women with preterm and low-birth-weight infants: Prevalence and risk factors for postpartum depression among women with preterm and low-birth- weight infants: a systematic review - PubMed (nih.gov)

Evolution of Depression and Anxiety Symptoms in Parents of Very Preterm Infants During the Newborn Period: Carmen C. Pace, PhD¹,²,³; Alicia J. Spittle, PhD¹,²,⁴; Charlotte M.-L. Molesworth, MBiostat⁵; et al https://jamanetwork.com/journals/jamapediatrics/fullarticle/2532578

Stress can lead to challenges for mothers with providing breastmilk

Breastmilk is essential for babies born premature or unwell. Mothers are often discharged home from hospital before their milk supply is established. This stress is counterproductive to her establishing an adequate milk supply. Successful exclusive breastfeeding is reduced due to this separation.⁵ In an independent study by The Impact Institute in 2021, it was found that Miracle Babies Foundation’s NurtureProgram improved breastfeeding success.

Human Milk: An Ideal Food for Nutrition of Preterm Newborn: https://www.researchgate.net/publication/328312715_Human_Milk_An_Ideal_Food_for_Nutrition_of_Preterm_Newborn

https://www.miraclebabies.org.au/content/miracle-babies-impact-report/gm1gyg

Inadequate Parental Leave Support for Parents of Preterm and Unwell Babies

Inadequate parental leave support extends stress and trauma, reducing bonding and placing vulnerable, unwell children at risk.

Miracle Babies Foundation requests the Australian Government introduce a Neonatal Critical Care Payment, in addition to the Australian Paid Parental Leave Scheme to ensure parents can support each other and their baby while the baby is in hospital. We note the parental leave support for parents of premature babies is provided to the NSW Public Service. Though available for preterm birth, there is no provision for when the baby is admitted for other reasons. Other employers also provide some support for preterm birth, but this is uncommon. For other employees there is no provision for financial strain and costs of caring for a baby in neonatal care which can cause more mental health distress.

With some babies spending 100 days or more in hospital, many use their parental leave before their baby is discharged from hospital. There is often little or no leave available for when the baby goes

⁴ Hall, S., Ryan, D., Beatty, J. et al (2015) Recommendations for peer-to-peer support for NICU parents. Journal of Perinatology 35 (Suppl 1), S9–S13

⁵ Boquien CY (2018) Human Milk: An Ideal Food for Nutrition of Preterm Newborn. Front Pediatr.

home, at time that can be very demanding. A Neonatal Critical Care Payment, for the time spent in hospital, in addition to the standard Government Paid Parental Leave will ensure equitable and effective early home experience and support for families with a premature or unwell baby. We propose this to be offered to families with babies in neonatal care for at least 2 weeks. This added financial pressure for parents can exacerbate their mental health challenges and again be another trigger for PND.

Impact on Future Pregnancies

Many families who have experienced post-natal birth trauma and mental health concerns relate to the emotional, financial and mental health challenges of having another pregnancy subsequent to a traumatic birth, premature birth or having a critically ill newborn baby. The consequences include a fear of these events recurring. These concerns may result in a desire for another child being extinguished.

“Every future pregnancy following my first miscarriage was stressful. All my plans for future pregnancies or other children were very fearful. | didn’t know if | could handle that level of stress through another pregnancy and the pain of worrying my husband and family was huge. After having 3 surviving children with losing 5 heartbeats along the way at different gestations | just couldn’t do it anymore. Even though | longed for one more child, | eventually had to let this dream pass me by.” Kylie Pussell, NICU Mother

Future Pregnancy Considerations after Premature Birth of an Infant Requiring Intensive Care: https://pubmed.ncbi.nlm.nih.gov/35491347/

Findings from a study related to the fear of future childbirth following birth trauma and admission to a neonatal unit determined that that there is a need of greater support for these mothers to help them process the trauma. The role of midwives and health professionals, and the delivery of empathetic care toward mothers and involvement in their own birth or baby’s care experience, can play a significant role. Routines are needed for follow up with women who have experienced a traumatic birth and have a fear of childbirth (or pregnancy) as a result, along with greater service provision for these parents.

‘Beck (2015) emphasizes that it is essential for healthcare professionals to prevent trauma whenever possible. She argues that women need to feel like they are being looked after, treated with respect, and communicated with in a way that makes them feel included in their own birthing process and able to maintain their dignity. The relational support and care women receive before, during and after childbirth could help prevent a traumatic birth experience (Dahlberg et al., 2016; Karlström et al., 2015; Lundgren & Berg, 2007; Lyberg & Severinsson, 2010; Nilsson et al., 2010).’

“I shut it out”: expectant mothers’ fear of childbirth after a traumatic birth: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9302015/

Content Update: HPU 360 Intensive Care Unit | AusHFG (healthfacilityguidelines.com.au) (SEE APPENDIX)

Post-Traumatic Stress Disorder (PTSD) Following Childbirth

The reported universal prevalence for Post-Traumatic Stress Disorder (PTSD) following childbirth ranges from 1.5% to 6%.⁶

Post-Traumatic Stress Disorder (PTSD) Following Childbirth: Prevalence and Contributing Factors: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3745743/#:~:text=In%20various%20studies%2C%20childbirth%20has,childbirth%20(3%2DS5).

Prevalence and Correlates of Posttraumatic Stress and Postpartum Depression in Parents of Infants in the Neonatal Intensive Care Unit (NICU): https://link.springer.com/article/10.1007/s10880-010-9202-7

2. A Deep-dive into Health Care Practices impacting Mental Health

Furthermore, the below practices contribute to poor mental health following the birth of a premature or unwell baby.

Separation following birth

Separation alone is traumatic. It also compounds any existing birth associated distress and the ensuing trauma and mental health challenges.

We advocate and support the World Health Organisation’s recommendation for Zero Separation; the keeping of mother and baby together from birth. Miracle Babies Foundation is strongly connected with the Global Foundation for the Care of Newborn Infants (GFCNI). A priority for the GFCNI is to eliminate the systematic and often unnecessary separation of primary caregivers from their child which is a major contributing factor to the mental health decline of neonatal parents.

The response from mothers when asked ‘what was it like going home and leaving your baby in hospital?’, even years later, often evokes a trauma response or; ‘It was the hardest thing | have ever had to do!’

Miracle Babies CEO and Co-Founder, Kylie Pussell, has over 20 years’ lived experience as a neonatal mother and in supporting families. She concludes; “Mental health is a major concern for neonatal families. There is strong evidence and multiple publications highlighting the increased risk of mental health concerns yet there are limited resources for preventative care to help improve parents mental health. Isolation and loneliness, results in the mother feeling unsupported and with an already established increased risk of PND, peer emotional support and connection to others with a shared lived experience can assist in this preventative care and pathways to refer and care for significant mental health concerns.

Working in partnership with hospitals and health care professionals in neonatal units gives Miracle Babies the unique opportunity through our programs to provide peer support which creates a more open conversation in which we can help navigate the parent to seek professional help as needed. The

⁶ Andersen LB, Melvaer LB, Videbech P, Lamont RF, Joergensen JS (2012) Risk factors for developing post-traumatic stress disorder following childbirth: a systematic review. Acta Obstet Gynecol Scand. Vol 91, Issue 11, p. 1261-72.

experience of having a premature or sick baby is traumatic with a range of emotions including failure, guilt, fear, uncertainty and others.

Together with the multitude of evidence already available on the increased risk factors for neonatal parents and the infant themselves, we need better support networks and trusting relationships with parents. Increased awareness of the risk factors and parent language information and connection to peer support are great first steps to help reduce the mental health concerns and normalise their experience with other neonatal experiences. “

“About 9-10 days after her birth at 33 weeks’ gestation, I finally went home which was bitter-sweet. I’ll tell you this was by far the hardest journey. Every single time I left that hospital without my daughter it got harder and harder. I remember not being able to leave unless her eyes were closed and she was asleep. I would nurse her to sleep every night, giving her a kiss on the forehead and waiting for her to close her eyes. I hoped it would be easier leaving if she was asleep, but it never was. There is nothing normal or easy about having a baby in the NICU. I know people may think or say things like ‘at least you get to go home and sleep’ or ‘You have someone caring for your baby, you don’t need to do anything’, but you are up all hours of the night wondering if your baby is ok, or if your phone rings at any point, will it be the hospital calling to say something is wrong. The endless amount of sleep I tried to get just wondering what she was doing and if that phone was going to ring was indescribable.” Miracle Mum, Nikki

Across Australia, families giving birth during the COVID-19 pandemic have experienced distress from being separated from their loved ones for extended periods and at times when emotional support was most needed. The repercussions are long-term. The pandemic exposed the inability of neonatal units to safely allow parents with airborne viral infections to visit their baby without the risk of infecting others. As a result, many families were isolated and existing trauma has affected their mental health for years following.

Often mothers are discharged home during their baby’s admission, even when that admission is only for a few days. Many mothers describe the day they went home and left their baby in hospital as harder emotionally than the day they birthed. The trauma from ‘the hardest thing I ever had to do’ is re-lived each day parents attend hospital to see and care for their baby, compounding and increasing their risk of poor mental health.

Many mothers have experienced a caesarean section and are still recovering physically when they are discharged. After discharge they are reliant on others to drive them to and from the hospital. Recovery from such a major procedure often precludes them from taking public transport. The need to be with their child impacts their own recovery.

For many families, the impact of separation is further compounded by distance from the baby. The impact of distance is obvious for regional and rural families but is also present for metropolitan families whose travel times can be excessive. The mothers become isolated, initially from the baby then, unavoidably, from their partner and then their other children. The family unit is broken with guilt, fear, isolation and loneliness all triggering or aggravating difficulties experienced at the time of birth and increasing mental health risks.

The World Health Organisation states ‘Mother and infant should be enabled to remain together while rooming-in throughout the day and night and practice skin-to-skin contact, including kangaroo mother care, especially immediately after birth and during establishment of breastfeeding.’⁷

Clinical management of COVID-19: Living guideline 2023: https://www.who.int/publications/i/item/WHO-2019-nCoV-clinical-2023.1

A 2020 Netherlands study found ‘future intervention strategies should aim at reducing mother-newborn separation and intensifying active parent participation in neonatal care.’⁸

Well-designed neonatal units, peer support and best practice models of care will reduce the unnecessary separation of parents from their child. We know that these interventions will reduce adverse long-term outcomes and improve parent mental health for these vulnerable families, and not compound, what is often an already distressing period of maternal care.

Post-Birth Practices for Mothers with a baby in Neonatal Care

A research study published in the Journal of Clinical Nursing, conducted in 2019, highlighted the lack of appropriate facilities and practices to cater for emotionally fragile mothers without their baby on the ward, these mothers described to have ‘slipped through the cracks’.

‘For most participants, being with mothers who had healthy full-term babies was confronting, as it heightened their awareness of what they were missing in the early months of motherhood. This was highlighted early for Mother 8 being in a postnatal ward after giving birth, surrounded by other mothers and their healthy babies. She described her emotional distress and the trauma she was experiencing as having slipped through the cracks.’

“They put us in a ward … everyone had their babies. No one told us what it meant to have an extremely premature baby. In my mind my baby was going to die … It was hard for me to hear their babies cry … I should never have gone to the postnatal ward … I don’t think anyone with an extremely premature baby should ever go there. It was cruel and awful and even in that time in NICU I think I was … our child was quite a healthy baby … I think we slipped through the cracks and a lot of things. (M8)”

The forgotten mothers of extremely preterm babies: The forgotten mothers of extremely preterm babies: A qualitative study - Fowler - 2019 - Journal of Clinical Nursing - Wiley Online Library

The relationship between prematurity and maternal mental health during the first postpartum year: https://www.sciencedirect.com/science/article/pii/S135518412200206X

⁷ World Health Organisation (2023) Clinical Management of Covid-19 Living Guide p. 100 ⁸ van Veenendaal et al (2022) Association of a Zero-Separation Neonatal Care Model With Stress in Mothers of Preterm Infants, JAMA Network Open

Additional factors impacting on trauma and mental health associated with admission to a Neonatal Unit

Geographical isolation

For families living in regional, rural and remote New South Wales the separation of not only mother, father/partner and baby causes concern, but also the separation from extended family, friends, colleagues and support of the whole community. As the ancient African proverb states ‘It takes a village to raise a child’. Parenting is rewarding yet can also be challenging and difficult for many. With so much separation, mental health risks and trauma revolving around a baby’s birth, what would usually be a joyful occasion can be a very isolating, lonely, stressful and traumatic experience. The financial burden of accommodation and public transport, petrol, parking to see and care for their baby in hospital each day is another layer of emotional distress and trauma which could be reduced by mother and baby units which would also reduce separation.

First Nations People

The word ‘separation’ can be very emotionally triggering for our First Nations people and being discharged or not provided the opportunity to be the primary caregiver of their baby can be extremely traumatizing. In addition to all the concerns raised above, our First Nations people are removed from Country and their Community to give birth or baby is transferred for care, away from Country and Community. This mental health trauma can be significant and long term. Facilities and Unit Design and working toward Zero Separation can assist in reducing this level of trauma and mental health risks and keeping family together. According to the Australian Institute of Health and Welfare, Australian Mothers and Babies Report Aboriginal and Torres Strait Islanders are 75% more likely to have a preterm baby. ⁹

Families from CALD backgrounds

In addition to the concerns raised above, families from a CALD background often enter a clinical world they never knew existed and face at times, difficult language and culture obstacles and barriers. Limited translation support and understanding of such medical complexities in a second language or limited language can increase the emotional distress and mental health risks for these vulnerable families. They can feel uninformed and not confident in this environment. Investing in Miracle Babies NurtureProgram and providing information in parent friendly language through translated information can help these families feel more included and understand more of their baby’s needs whilst in neonatal care and after discharge. Miracle Babies Foundation website has a world-first comprehensive information hub with a language and accessibility tool that can translate into over 140 languages, text to talk and more. All information is peer developed and approved by our Clinical Advisory Team, in partnership with health care professionals. Empowerment and access to information can assist in positive mental health for neonatal parents.

⁹ Hilder L, Zhichao Z, Parker M, Jahan S, Chambers GM (2014). Australian Institute of Health and Welfare (2012) Australian Mother’s and Babies Report

LGBTQIA+ people

In addition to the concerns raised above LGBTQIA+ people can experience increased isolation, discrimination and judgment. According to COPE, although research into perinatal mental health conditions in same-sex parent is limited, one study found that lesbian and bisexual biological mothers were significantly more likely to experience symptoms of anxiety and depression when compared with heterosexual women.

Young Parents

In addition to the concerns raised above, young parents with a baby in neonatal care can experience severe isolation. At times due to being quite separate from their peers and friends their own age due to different life points and then being much younger than other parents in the unit. They can feel judged, watched, expected to fail which all leads to another layer of emotional distress and mental health along with the guilt, fear, isolation and loneliness that most parents feel.

Association of a Zero-Separation Neonatal Care Model: Association of a Zero-Separation Neonatal Care Model With Stress in Mothers of Preterm Infants - PubMed (nih.gov)

WHO advises immediate skin-to-skin care: WHO advises immediate skin to skin care for survival of small and preterm babies

The impact of separation is compounded for vulnerable populations. Re-experiencing the powerlessness experienced by the removal of indigenous children from their families is triggering for some families, who now feel they are powerless to provide the support and maintain the physical and cultural contact their baby needs.

Other vulnerable groups are impacted. Families in low socio-economic brackets find it difficult to pay for petrol and hospital parking. Mothers with poor mental health find their mental health further deteriorates or is aggravated by the separation after birth. Conditions such as attention deficit hyperactivity disorder (ADHD), can be aggravated or even first exposed after birth, making the organisation required of visiting baby difficult. Mothers who are at risk of their baby being taken into out-of-home care, are unable to attend to their baby’s care and receive the support needed to keep their baby with them.

The lack of preventative care for mental health challenges in the neonatal unit is alarming. Hospitals have limited access to social work support and at times, only the high priority of cases will be seen, leaving a vast number of parents with limited or no mental health support during their neonatal stay. Peer support can fill this gap and welcome the parents into a community of compassion and empathy in a preventative model of care.

Lack of Kangaroo care (skin-to-skin)

Kangaroo care or skin-to-skin contact are some of the terms used in Australia. Kangaroo care is a vital part of neonatal care for parents and baby.

Models of Care, equipment, training and infrastructure for immediate kangaroo care should be implemented universally. Every effort should be made so that, when clinically safe, neonatal care for premature or sick babies is provided while the baby remains with the mother. Similarly, Zero Separation, when clinically safe, should be implemented using a model of care that provides neonatal care in the maternity unit at the mother’s bedside. Avoiding admission to the neonatal unit will reduce baby’s length of stay and avoid separation.

Benefits to Baby:

Maintain baby’s body temperature
Regulates baby’s heart and breathing rate
Encourages baby to spend more time in a deep sleep
Increases baby’s weight gain
Improves oxygen saturation levels
Can improve breast milk production and increases the chances of successful breastfeeding
Longer periods of alertness
Helps promote frequent breastfeeding

Benefits to Parents:

Can build confidence
Increases your bond with baby and can ease feelings of separation
Can improve breast milk production and increases the chances of successful breastfeeding

Lack of Family Integrated Care

Family Integrated Care (FiCare) is widely researched and evidenced and should be at the forefront of all neonatal units design, implementation and staff training. Providing facilities, zero separation and FiCare all work together to improve optimal outcomes for premature and sick babies and their families, reducing trauma and risks of mental health concerns.

In the modern NICU, preterm babies are cared for by highly specialised staff. While parents are welcome in the NICU, they do not feel that they can care for their baby as much as they would like to. Separation of babies and parents in the NICU leads to feelings of disempowerment in the parents. As a result, parents may feel stressed and anxious, a loss of control and experience and they develop concerns around their ability to care for their baby after discharge.

Family Centred Care (FCC) or Family Integrated Care (FiCare) is an approach to planning and delivery of health care that encourages greater parent involvement in their baby’s care. A Lancet article found that FiCare in the NICU, FiCare improved infant weight gain, decreased parent stress and anxiety, and increased high-frequency exclusive breastmilk feeding at discharge.

Internationally, clinicians caring for mothers and babies, conclude that Kangaroo Care, Kangaroo Mother Care FiCare are important advances in neonatal care.¹¹ These models of care all have evidence that they reduce mortality and morbidity.

Effectiveness of Family Integrated Care in the NICU: Effectiveness of Family Integrated Care in neonatal intensive care units on infant and parent outcomes: a multicentre, multinational, cluster-randomised controlled trial.

Miracle Babies Foundation/Family Integrated Care: https://www.miraclebabies.org.au/content/family-integrated-care/gkb3l4

Research papers on Family Integrated Care: https://familyintegratedcare.com/research/

Recommendations:

Inclusion of those born prem or sick as a priority in the First 200 Days and Thriving Kids focus
The inquiry consults parent organisations, such as Miracle Babies Foundation https://www.miraclebabies.org.au/ who work specifically with neonatal families from a high-risk pregnancy, birth of a premature or sick baby, time spent in hospital, discharge and transition to home, the early and developmental years right through to adulthood.
The inquiry invites parent organisations, parents, consumers and clinicians to share their birth and postnatal NICU lived experiences to develop the Thriving Kids Initiative relating to parents with a lifelong disability who has had a baby in neonatal care
These organisations are consulted to develop services that minimise mental health, improve wellbeing and ensure the psychological health of all family members.

¹¹ O’Brien K, FRCPC, (2018), Effectiveness of Family Integrated Care in neonatal intensive care units on infant and parent outcomes: a multicentre, multinational, cluster-randomised controlled trial, The Lancet Vol 2, Issue 4, pg 245-254

Policy, Investment and guidelines to implement neonatal unit design, development and retrofitting of family facilities to assist in reducing isolation and mental health distress.
Develop maternity and neonatal models of care that support zero separation.
Investment and recommendations to ensure, at birth, immediate and ongoing Kangaroo Mother Care and FiCare.
Funding peer support services for families experiencing preterm birth or admission to a neonatal unit.
Neonatal services provide both pre and post discharge transition to home support for preterm and unwell babies.
Mental health assessments are provided at more regular points for parents in a safe space.
Mental health assessments for parents should be a regular part of all ongoing neonatal assessments.
Policy to avoid neonatal mothers being placed in a maternity ward with babies in the unit . This continues to be a mental health risk for mother’s placed in this situation.
Hospital facilities to provide for parents to be there more often
Increased focus on peer support from the start (threatened pregnancy and infancy)

A systemic review with consumer consultation is recommended to identify the barriers to Zero Separation. Evidence-based models of care (including Family lntergrated Care (FiCare) and Kangaroo Mother Care) should be implemented. The recommendations of the Australian Health Facility Guidelines should be fully implemented and, when possible, be retrofitted to current neonatal units.

Australasian Health Facility Guidelines: AusHFG | (healthfacilityguidelines.com.au)

Thank you for the opportunity to provide a submission for our neonatal community in the development of the Inquiry into Thriving Kids Initiative. If any further information is required, please contact me.

Yours Sincerely,

redacted
Kylie Pussell OAM
CEO & CoFounder
GFCNI Parent & Patient Board Member
Mum to 3 surviving miracle babies
Miracle Babies Foundation

FAMILY STORIES

Miracle mum Tempany shares Ashton’s story:

I have a complex of health issues and knew I wouldn’t make this pregnancy (4th) to term, I was roughly 22+5 weeks. Early morning my waters suddenly broke on the 1st of December we rushed to the hospital and got assessed and confirmed my waters had broken and were continuing to, I was admitted straight away and after the doctors had a huge meeting they decided to assist and help prevent pre-term labour and gave me my first steroid injection.

On the fourth day I felt off and told one of my nurses that something did not feel right, and I said I would have baby today, she dismissed me and said everything looked fine just have a rest. I tried to not think about it and had a nap but shortly after woke up to a tightening in my stomach and called the nurse over, sure enough, I was having contractions and was rushed to have an emergency c-section at 23 weeks.

He was born and was rushed to NICU, I didn’t get to see him for at least 4+ hours at that point because I was so nauseous from the surgery, little did I know I was sick with a staph infection that we found out a week later, I couldn’t lift my head at one point. We both fought for our lives for 3 months, I was in and out of the hospital fighting my staph infection, two haematomas and another infection in my abdominal area that needed major surgery to clean out my body. Surprisingly, I recovered 4 weeks before Ashton got to come home.

Ashton was born with a hole in his heart that after a year closed up fully by itself, he has cerebral palsy, global development delay, suspected Autism, glaucoma, and is short-sighted with other eye issues, he is a happy 4 and half year-old who is thriving and loving ECDP, I’m forever grateful for all the doctors, nurses and NICU doctors and nurses for everything they did for me and my son.

Miracle mum Ally shares Kodah’s story:

Kodah was born at 25+4, 5 days before Christmas 2022.

He spent a total of 123 days at redacted in Adelaide. He was born due to severe IUGR and abnormal dopplers, he was 565g when he was born via c section at 11:01am on the 20th of December 2022.

During his stay at redacted he went backwards and forwards health wise, he had grade 2 & 4 brain bleeds 3 days after birth, NEC when he was 34 weeks corrected which made him extremely sick and was his biggest hurdle. He also had ‘the biggest inguinal hernia’ the doctors had seen which was operated on 9 days before we got to take him home.

During his entire stay at redacted due to Covid restrictions his two older brothers weren’t allowed in to meet him so they only met him for the first time when he was 4 months old. Kodah came home on oxygen and was on it till he was 11 months old.

He was also diagnosed with Cerebral Palsy at 10 months and we were told he wouldn’t walk before two.

Fast forward to now, he’s a thriving two year old and has been walking since he was 15 months corrected, he’s still our ‘tiny man’ at 9kgs but he’s a little firecracker who is proof of ‘small but mighty’.

Philippa is Mum to three children, two of which have spent time in either a SCN or NICU.

Her son Tristan was born at 37 weeks with Strep B and spent a short time in redacted SCN. At 6 weeks of age, Tristan contracted Bacterial Meningitis and spent time at redacted before being transferred to redacted NICU, where he spent 6 weeks. Tristan has contracted Meningitis 5 times in total and suffers from an immune deficiency.

Tristan has experienced many life-long hurdles with the after effects of Meningitis including Epilepsy, Language and Motor delays, ADHD, Dyslexia, Cordial Dysplasia and Optic Nerve hypoplasia.

Matteo was born at 39 weeks with Mast Cell disease and Inflammation Bowel Disease and has spent a week in redacted

Philippa has been involved with Miracle Babies Foundation since 2014, initially as a volunteer before joining the staff in 2015. After a break in 2017, she returned as a staff member in 2021. Philippa is deeply passionate about supporting families who have experienced time in the Neonatal unit.

APPENDIX

Australasian Health Facility Guidelines: AusHFG | (healthfacilityguidelines.com.au) Content Update: HPU 360 Intensive Care Unit | AusHFG (healthfacilityguidelines.com.au)

2.4.2 Entry, Waiting and Visitor Support Areas

This area provides the public entry point to the Unit and support facilities for families such as waiting areas, interview rooms, beverage bays and family rest areas.

A reception area may be provided to direct visitors and assist in managing expectations and reducing anxiety. The safety of staff working in reception requires consideration given this area can be isolated. Access to duress alarms is essential in this area and consideration may be given to sharing the reception with other units.

Other considerations relating to this area include:

separation of visitor flows to the unit from patient transfers in and out, ‘back of house’ flows, e.g. transfer of waste, and staff access points;
provision of privacy in the waiting area, e.g. having seated areas arranged so people do not have to sit and face each other;
access to a children’s play area for larger units;
access to parenting rooms including for breast-feeding;
provision of facilities for family members to rest, shower and access toilets; as well as access healthy food options and drinks at all hours of the day;
consideration of multi-function rooms for use as both overflow interview rooms during the day and overnight family rooms;
inclusion of dual egress within interview rooms and access to duress alarms; access to health information and health promotion advice; and implementation of appropriate signage for visitors.

It is recommended that consultation with consumer representatives is undertaken during the planning and design of ICUs.