Follow Up Care
ADVOCACY
Improved long-term follow-up care for children and teens born premature or sick.
As a parent led organisation built on the lived experiences of families, Miracle Babies call for more support through childhood and the teenage years. Currently, many neonatal follow-up clinics provide developmental assessments during the early years often at 4 months, 8 months, 12 months, 2 years and prior to school entry. Children may then be discharged once they are assessed as not requiring additional support at that stage.
However, research and lived experience continue to show that some children born premature or sick can experience challenges that emerge later in childhood, adolescence and adulthood. As school demands increase and social, emotional, behavioural and learning expectations become more complex, some difficulties may only become apparent during the primary and high school years.
Miracle Babies Foundation strongly call for additional follow-up assessments to be offered to this vulnerable group of children and teenagers to better equip and support them for the next life stages through to adulthood.
An assessment at age 10-12 years before entering high school can help prepare families for needs that may not have been seen in the early toddler years. This will also help schools and educators better understand any challenges and unique learning or behavioural needs that may arise.
An assessment at age 14-16 years is also called for. There is significant evidence of mental health, social and behavioural issues that can arise during these ages. For many parents and educators, these health risks are unknown so are at risk of not being identified and treated with the right care.
Assessments may involve a multidisciplinary review to identify learning, behavioural, social functioning, executive skills and emotional needs and provide recommendations for families, schools and healthcare providers.
Miracle Babies CEO and CoFounder Kylie Pussell OAM, knows how difficult it can be for families in this position.
“Learning to advocate for my child who was born extremely preterm at 25 weeks was difficult. It took me many years to become confident and navigating the changes for her learning needs. Having more follow up care with a health care team experienced in challenges for children born preterm would have been so helpful in improving her education supports and outcome. Parents want and need more follow up care through the vital ages of 10-12 years and 14-16 years. To improve long-term outcomes for our children, these clinic assessments need to be extended long after the toddler years”.
Without ongoing follow-up during the school years, important difficulties may be missed or identified much later. Some of the key risks include:
- Learning and academic difficulties
Problems with attention, processing speed, working memory, executive functioning, maths, reading comprehension, or organisation may emerge more strongly in upper primary and high school when workloads become more complex.
- Behavioural and emotional challenges
Increased risk of anxiety, depression, low self-esteem, emotional regulation difficulties, and social withdrawal. Some children born premature are also more likely to experience ADHD-like symptoms.
- Social difficulties
Trouble interpreting social cues, making or maintaining friendships, managing peer conflict, or feeling different from peers. These challenges can become more noticeable during adolescence.
- Mental health vulnerability during adolescence
Teenage years are a high-risk period for emerging mental health concerns. Young people born premature or sick may have higher rates of anxiety disorders, mood difficulties, trauma responses, or stress related to their early medical experiences.
- Transition difficulties
Moving from primary school to high school often increases demands for independence, planning, emotional regulation and self-advocacy — areas where some premature or medically complex children may struggle.
- Family stress and missed supports
Without follow-up, families may not realise supports are available through schools, allied health, mental health services, disability services, or educational adjustments.
- Late diagnosis = delayed intervention
When concerns are not identified early, children may struggle academically, socially, or emotionally for years before receiving appropriate assessment and support.
Research increasingly shows that outcomes for children born premature or sick should not only be measured in infancy or toddlerhood. Some challenges are “late emerging,” meaning they only become evident once children reach adolescence and face more complex cognitive, emotional and social expectations.
The Murdoch Children's Research Institute (MCRI) is developing a national clinical guideline to support individuals born very preterm from school age through to adulthood. It will address the increased risk of chronic physical and mental health conditions into adulthood and promote consistent, coordinated, and long-term shared healthcare.
This work builds on the NHMRC-endorsed 2024 Guideline for Growth, Health and Developmental Follow-up for Children Born Very Preterm, developed by the Centre of Research Excellence in Newborn Medicine, providing recommendations from birth to preschool age. Available at CRE in Newborn Medicine.
MCRI and partner organisations have been actively involving individuals with lived experience including consumers and clinical experts to ensure the guideline is practical and addresses real-world needs.
Miracle Mum Megan says:
“An assessment of my son, who was born prematurely at 28 weeks, would have been incredibly beneficial in the teenage years. At around 14-15 years old, his behaviour was very challenging at times, and I often found myself questioning whether some of his behaviours and struggles were related to his prematurity, puberty, trauma or simply typical teenage development. In those moments, I frequently looked back to his early years and the worries that began when he was first born. I remember in the early days, months and years being given statistics and information about the possible long-term impacts of his prematurity, including ADHD, autism, learning difficulties, and emotional or behavioural challenges. While that information was important, it also stayed with me throughout his childhood and adolescence. As he grew older, it was difficult to know what may have been linked to his premature birth and what was considered “normal” teenage behaviour. Having access to a specialised teenage assessment or follow-up support would have provided reassurance, guidance, and a better understanding of his individual needs during such an important stage of development.”
The Miracle Babies Foundation parent information hub Nurture 'E' - The EEE Impact, created in collaboration with parents and health professionals has been designed to assist families, children and teens through the primary and high school years ahead with Evidence, Education and Empowerment. Areas already covered in the High School Years section of Nurture ‘E’ include learning difficulties, social skills and mental health as well as a range of others.
We also have a blog piece available on guiding miracle teenagers through their high school years available here
Further Research
DeMauro SB, Merhar SL, Peralta-Carcelen M, Vohr BR, Duncan AF, Hintz SR.
Follow-up studies are essential for understanding outcomes and informing the care of infants with high risk for medical and developmental consequences because of extreme prematurity or perinatal illness. Studies that extend to school age often identify sequelae that go unrecognized in neonatal or short-term follow-up studies. Many critical neurocognitive, behavioral, functional, and health outcomes are best assessed beginning at school age.
Long term follow up of high-risk children: who, why and how?
Lex W Doyle, Peter J Anderson, Malcolm Battin, Jennifer R Bowen, Nisha Brown, Catherine Callanan, Catherine Campbell, Samantha Chandler, Jeanie Cheong, Brian Darlow, Peter G Davis, Tony DePaoli, Noel French, Andy McPhee, Shusannah Morris, Michael O’Callaghan, Ingrid Rieger, Gehan Roberts, Alicia J Spittle, Dieter Wolke , Lianne J Woodward
Most babies are born healthy and grow and develop normally through childhood. There are, however, clearly identifiable high-risk groups of survivors, such as those born preterm or with ill-health, who are destined to have higher than expected rates of health or developmental problems, and for whom more structured and specialised follow-up programs are warranted.
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