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Brain Development in Children with Congenital Heart Disease

Information for Parents/Carers and Professionals

Children with congenital heart disease (CHD) can have differences in how their brains work. These can affect a wide range of skills and abilities, and can impact children at home and at school. These problems are more likely if a child has a very complex heart condition or if they have experienced complications from treatment, like strokes. If carers or professionals working with a young person with CHD think the young person might have problems with learning or behaviour, they can talk to the child’s cardiology team about whether a referral to psychology would be helpful.  

What Do We Know About Developmental Differences in CHD?

Many children with congenital heart disease (CHD) experience differences in how their brain develops and functions. Multiple scientific studies of lots of different CHDs have shown this to be true. The general rule of thumb is that the more complex the medical presentation (CHD needing early or multiple surgeries to treat, involving periods of development where a child has low oxygen saturations, or children who have genetic syndromes and/or with other physical health problems), the higher likelihood of some differences in cognitive ability – how someone’s brain works. The reasons for this are complex – it likely has to do with a range of genetic and biological factors that affect brain development. Genes that affect how the heart is formed can also impact on how the brain is formed, for example, or certain treatments to help a child with a heart condition impact on brain development. This is no one’s fault and not something that can be avoided in general, so simply being aware of what to look out for and how to seek help for your child is the best you can do. 

Factors Increasing Risk 

Often when the heart condition has been treated and a child appears well, there is not a lot of understanding of the impact of CHD or treatment for it on their development. Some children unfortunately experience acute brain injuries, such as strokes or what are called hypoxic or ischemic injuries (these both relate to periods of time when the blood supply to the brain has not been sufficient and an injury to the brain has resulted), as complications from surgery, cardiac arrest, or treatment. ECMO, a life-saving treatment that is used when your child’s heart and lungs cannot work for themselves, can also have impacts on a child’s development, as can the experience of cardiac arrest. Again, the rule of thumb with these events is that the longer they last (e.g. the longer a course of ECMO or the longer a cardiac arrest), the higher the chance there is of some difficulties affecting development of the brain. 

With acute injuries, the team at East Midlands Congenital Heart Centre may involve a specialist doctor called a neurologist. They may perform scans of your child’s brain to look for specific types of injuries or problems. However, not all types of difficulty can be seen on the scans neurologists perform. For example, difficulties where different parts of the brain may not link up as well as they would in a typically developing child’s brain cannot be seen on traditional imaging like CT or MRI. This means that even if your child has had a brain scan and a doctor has said there are not problems visible, it is worth bearing in mind that if you are noticing something that worries you about your child’s learning or behaviour, their treatment could still have played a part in impacting how their brain developed. It is also important to note that while problems may not immediately be apparent, they can develop over time as a child’s brain matures and changes. This is because brain development is very complex and influenced by lots of different things working together in just the right way. 

Types of Difficulties 

Common difficulties include early motor deficits (sensorimotor, visuospatial, and speech articulation problems). These can spontaneously improve in some children, and might be considered developmental delays. If your child is an inpatient at EMCHC for a period of time, they will receive physio and occupational therapies to help nurture their development and overcome these early difficulties. Common problems that emerge later, usually once children begin attending school, are difficulties with attention, narrative memory, language, and higher intellectual processes. For example, many children with CHD find maths difficult, as maths involves using lots of parts of the brain working together – this is what we mean by higher intellectual processes. 

We also know that children with CHD, particularly complex CHD or those that have a genetic syndrome associated, are at significantly increased risk of conditions called neurodevelopmental disorders, like autism spectrum disorder (ASD) and attention deficit disorder (ADD, sometimes known as ADHD) – this can be more than 33% increased risk for some types of CHD. ASD refers to a set of conditions that share in common difficulties with sensory processing, social interactions, and preference for repetitive or restricted interests or behaviours. ADD refers to a condition where a person can struggle to pay attention and/or can be hyperactive, unable to settle themselves to a task, which affects all areas of their lives. It is important that if you or your child’s school have concern that your child may have a neurodevelopmental disorder, this is screened for by an appropriately qualified clinician. There can be long waiting times for a diagnosis of ASD or ADD on the NHS, and so it will be important to have support from your child’s school during this process, as school will be where your child spends most of their time.  

What To Do If You Have Concerns 

If you have concerns that your child may have problems with learning or behaviour, including possible ASD or ADD, you can ask your child’s cardiologist or clinical nurse specialist to make a referral to the paediatric psychology team for assessment. The team can help direct referrals appropriately, complete specialist cognitive assessments, and provide advice to families, schools, and clinicians. This is particularly important if your child’s difficulties are impacting on how they cope in clinic appointments to monitor their heart, as we can help you and the team at the hospital think about support or adjustments that your child may need. 

And as a final note, it’s important to remember that many children with CHD do not have these difficulties. If your child is coping well at home, in school, and in outpatient follow-up clinics, you do not need to worry that there may be something different about their brain. The only reason to raise the question is if some aspect of their behaviour makes you or someone else concerned, and there is no other way to understand it – for example, many children behave differently during times of stress or change, only to revert to their normal functioning once they have adjusted. Your health visitor or school nurse may be able to provide further information and support to you, if you are unsure about what is “normal”, as there can be a lot of variation in children that is perfectly healthy and ok. However, if you feel the difficulties are persistent and you are concerned, don’t feel afraid to raise this with your child’s cardiology team. 


 Neurodevelopmental: relating to the development of the brain and nervous system 

 Sensorimotor: integration of input from the senses with movement 

 Visuospatial: understanding of how we see objects and understand them in reference to other objects 

 Speech articulation: forming to speech sounds by the mouth, tongue, and lips 

 Attention: the ability to maintain focus on a task or target for a sustained period of time and not be distracted by other things 

 Narrative memory: remembering how things relate to one another, e.g. remembering details from a story or long block of text 

 Cognitive assessment: special tests that psychologists and other professionals perform to understand how different areas of the brain work in any given person 



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