CHD and Neurodevelopment

Neurodevelopment is a term that describes the brain’s development of neurological pathways that influence performance or functioning. It is the skills children acquire during infancy, childhood and adolescence, and how they use those skills in different situations and environments.Neurodevelopment is a term that describes the brain’s development of neurological pathways that influence performance or functioning. It is the skills children acquire during infancy, childhood and adolescence, and how they use those skills in different situations and environments.^[1] How children develop is influenced by interactions between biological, genetic and social factors and the environment.

It includes things like:

• motor skills
• communication, play and social skills
• learning, reading and focusing
• behaviour and emotions

Children with neurodevelopmental difficulties may need to work harder to develop some of these skills.

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As survival rates for CHD have improved, there has been an increasing focus on how CHD can impact neurodevelopment and quality of life.

As a group, children with complex CHD are at an increased risk of developmental difficulties compared to those with simple or no CHD.

This does not mean that all children with complex CHD have these difficulties. Many do not. Similarly, a small percentage of children with mild CHD may experience neurodevelopmental challenges.^[2]

My daughter Mahli-May is six now and mostly healthy. However, her [CHD] has affected her development.

She can be quite impulsive and has certain unusual traits, but they work for her. Mahli’s so different. She doesn’t fit into any box. She’s so funny, and she’s smart in a lot of ways.
— Monique, Mum to Mahli-May

Risk factors of developmental difficulties that can be more common in children with CHD, particularly complex CHD, include:^[3][4][5]

• Altered blood flow to the brain before and after birth
• Cardiopulmonary bypass (open heart) surgery as an infant
• Extended time in the intensive care unit (ICU) or in the general hospital environment
• Genetic syndromes or anomalies

These factors can vary across children.

^[3][4][5][6]

Infants and toddlers

May show delays in their motor skills, like crawling and walking. They will often catch up to their peers, but monitoring and early intervention is still beneficial. Delays in their feeding, early communication and play skills may also occur.

Early childhood and primary school

This is a period of significant growth and skill development. They may show difficulties with attention, planning and organisation, memory, problem solving and managing emotions. They may experience challenges with more complex communication. These issues can impact how children learn and socialise with friends and peers.

Adolescence and high school

Adolescence is a time of increasing academic and psychological demands. Developmental and behavioural concerns seen in childhood can continue into adolescence and new concerns can also occur. These may impact on daily living skills, social relationships, academic achievement and workplace participation.

For some adolescents, the experience of chronic illness can also impact their mental health, wellbeing, and self-esteem.

This depends on the type of developmental difficulty your child is experiencing.

You may work with:

• Paediatricians
• Physiotherapists
• Occupational therapists
• Speech pathologists
• Psychologists
• Play therapists or child life therapists
• School staff and teachers
• Other community or educational services

^[8]

The National Disability Insurance Scheme (NDIS) funds support for children younger than 7 with developmental delay and support for children and adults with a disability. Support can include NDIS plans, or assistance to connect with community and mainstream supports to facilitate early intervention. CHD is not covered by the NDIS. Speak to your GP or Paediatrician for further information.

[1] State of Queensland (Queensland Department of Health). 2 Act Now for kids 2morrow: 2021 to 2030; Available from Child Development ACT Now 2 (health.qld.gov.au)

[2] Verrall CE, Blue GM, Loughran-Fowlds A, Kasparian N, Gecz J, Walker K, et al. ‘Big issues’ in neurodevelopment for children and adults with congenital heart disease. Open Hear [Internet]. 2019 Jul 3;6(2):e000998

[3] Lawley CM, Winlaw DS, Sholler GF, Martin A, Badawi N, Walker K, et al. School-Age Developmental and Educational Outcomes Following Cardiac Procedures in the First Year of Life: A Population-Based Record Linkage Study. Pediatr Cardiol. 2019;40(3).

[4] Marelli A, Miller SP, Marino BS, Jefferson AL, Newburger JW. Brain in congenital heart disease across the lifespan: the cumulative burden of injury. Circulation. 2016 May 17;133(20):1951-62.

[5] Wernovsky G, Licht DJ. Neurodevelopmental outcomes in children with congenital heart disease–what can we impact? Pediatric critical care medicine: a journal of the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies. 2016 Aug;17(8 Suppl 1):S232.

[6] Latal B. Neurodevelopmental outcomes of the child with congenital heart disease. Clinics in perinatology. 2016 Mar 1;43(1):173-85.

[7] Ilardi D, Sanz JH, Cassidy AR, Sananes R, Rollins CK, Shade CU, Carroll G, Bellinger DC. Neurodevelopmental evaluation for school-age children with congenital heart disease: recommendations from the cardiac neurodevelopmental outcome collaborative. Cardiology in the Young. 2020 Nov;30(11):1623-36.

[8] Raising Children Network NDIS FAQS https://raisingchildren.net.au/disability/ndis/aboutndis/ndis-faq

Neurodevelopmental care is a priority in the Australian National Standards of Care for Childhood-onset Heart Disease.

Acknowledgements: This fact sheet was prepared in consultation with members of the Queensland Paediatric Cardiac Service’s CHD LIFE Program (Queensland Children’s Hospital).

This fact sheet was reviewed and updated by HeartKids in March 2023. It was endorsed by the HeartKids Clinical Advisory Committee at the time of publication. Clinical information might change after this date. The information in this fact sheet is general. It is not a substitute for medical advice from your doctor. Always talk to your doctor about matters that affectyour or your family’s health. Got some feedback about our resources? Go to: heartkids.org.au/feedback

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