Infants born with a congenital heart condition today will likely have better outcomes, both cardiac and developmental, than those infants born just a generation before. With improved understanding of congenital heart disease (CHD) and medical advancement, the number of adults living with congenital heart disease continues to increase. More studies are being done on these adult patients, which can provide information to help prepare families of children who are newly diagnosed. Still, because it is only fairly recently that children with cardiac problems have started to live well into adulthood, there is an evolving medical position on how the pre- and post-operative stages, parental attitude, school environment, and other factors might affect the child’s development, both physically and mentally.
Each age and stage of life of the child with CHD can have its own set of challenges. It might seem that as soon as your family has found ways to negotiate one stage of development, the next stage has arrived. Being a parent to an infant or toddler with a heart condition can be very different from being a parent to a school-aged child with a heart condition. Similarly, being a teenager with a heart condition is different from being a nine or ten-year–old with the condition. As teenagers reach adulthood, they are faced with new issues, physical and social (for example physical frustration, sexual maturity, or accepting limitations), that further affect their care and well-being.
Your family support system and the health care team can help you and your child face adulthood by understanding their concerns, and helping them develop coping strategies that they can take with them into their adult years.
The child with congenital heart disease
How does a congenital heart condition affect overall development?
With recent medical advances, children with cardiac problems are living well into adulthood. As researchers try to understand the implications of these positive advances, there is not yet a clear answer on how severely CHD influences physical and mental development. It is clear, however, that congenital heart disease or its treatment can affect parts of the body beyond the heart. Though it is impossible to say with certainty what challenges lie ahead for any given child, doctors do their best to predict what a child might face, drawing conclusions from high quality studies that include large groups of children with similar conditions, and based on their own experiences with such children.
Overall, children with congenital heart disease tend to have a higher risk of developmental concerns than children without CHD. In general, the majority of children with CHD seem to function at a normal level. But some children have higher rates of mild deficits in cognition, language, attention, or motor functions. While the effect of all factors that influence recovery and development after surgery is not well understood, research has shown that the greatest predictor of psychological and emotional functioning after surgery is the child’s functioning before surgery. Research suggests that a child with a severe CHD is at greater risk for neurodevelopmental consequences than a child with a mild CHD. This increased risk is related to the multiple surgeries and other treatments often associated with CHD. The more treatments the child undergoes, the greater the risk for developmental issues.
In Western countries like Canada, about 1 in 100 children born with CHD require surgery. About 1 in 4 of those children shows signs of developmental and neurological abnormalities after surgery.
It is important to note that every child with CHD has a different combination of factors influencing development, which makes every patient unique. There are many factors that can influence your child’s development. In general, your child’s condition will vary according to:
- the type of heart defect
- the severity of the heart defect
- the condition of the child before treatment
- the age when treatment was received
- the type of treatment received and its outcome
- the number of treatments undergone
- the length of time spent on bypass or in circulatory arrest during surgery
- the length of time spent in the ICU after surgery
- the length of hospital stay
Moderate to severe congenital heart disease occurs in about 6 per 1000 live births. In cases of severe CHD, either the heart condition itself or the treatment carried out to correct it can result in problems that can significantly affect long-term cognitive development, such as the child’s sensory abilities and awareness, ability to think, learn, and use language. Complex cases to which this applies more frequently include hypoplastic left heart syndrome, transposition of the great arteries, and single ventricle defects.
Less severe CHD, such as ventricle septal defects or trivial lesions, occur in about 75 per 1000 live births.