Cardiac Neurodevelopment Program  (CNP)

Neurodevelopment is the word used to describe how the brain makes connections that help us learn, focus, develop social skills, etc. Your brain makes these connections all the way until early adulthood, and heart defects can affect the way the connections are made.

Cardiac neurodevelopment includes all aspects of motor, language, cognitive, social-emotional and psychological development throughout life for individuals with pediatric and congenital heart disease. Children with heart disease can have challenges in one or more of these areas. While some of these challenges are picked up during infancy or early childhood, others may not develop until later childhood, adolescence, or even adulthood.

The American Heart Association (AHA) and the American Academy of Pediatrics (AAP) recommend developmental or neuropsychological testing for all children with high-risk congenital heart disease (CHD). Even if your child is meeting all of their milestones when they are young, they may have difficulties with learning, thinking or behavior as they age.

Experts have identified three groups of children who are at the highest risk for neurodevelopment challenges. Your child may belong to more than one group.

• Babies who had heart surgery using a heart-lung bypass machine in the first year of life.
• Children with ongoing low oxygen levels who may not have had early surgery (chronic cyanosis).
• Children who were hospitalized secondary to CHD or had one or more procedures for CHD under the age 18 AND one or more factors that increase neurodevelopment risk:
  • Genetic abnormality/syndrome associated with developmental delay or disorder
  • CHD physiology resulting in decreased O2 and nutrient delivery to the brain
  • Premature/early-term birth
  • Postnatal CHD diagnosis requiring neonatal surgery
  • Perioperative seizure in infancy
  • Cardiopulmonary resuscitation
  • Mechanical support (ECMO or VAD)
  • Heart transplantation
  • Socioeconomic disadvantage
  • Significant psychological distress in parent
  • Feeding delay in infancy
  • Growth failure in infancy or toddlerhood
  • Developmental delay in infancy or toddlerhood

Not every child who has CHD will have neurodevelopmental problems.

Some children may have delays that are noticed early on. In infants through pre-k, this may look like this:

• Gross Motor Delays (crawling/walking)
• Difficulty with Fine Motor Skills (drawing/writing)
• Language Delays
• Poor attention
• Difficulty managing emotions and behavior
• Less socially and emotionally mature than other children their age
• Feeding
• Sleeping

They may need physical, speech, occupational, or feeding therapy to help with this.

Some children may only have delays showing up once they start school. Some children may have difficulties learning more complex information, where their brain has to work quickly to process it. This may look like difficulty with:

• Attention
• Memory
• Organization and planning
• Reading and math
• Visual-spatial skills
• Social skills

Learn more about supporting development in children with congenital heart disease.

• Ask about risk: Talk with your child's heart team about which risk category your child is in.
• Follow up: Keep all recommended developmental check-ups, even if your child seems to be doing well.
• Watch milestones: Share any concerns about movement, speech, behavior, independence or school progress with your child's care team.
• Support feeding and growth: Work with your child's team on nutrition and feeding strategies.
• Care for yourself: Parent well-being helps your child's development. Ask for help and support when you need it.
• In the hospital: Family centered developmental care (skin-to-skin holding, gentle handling, therapies, safe positive feeding practices) supports brain growth.
• After discharge: Early intervention programs, coordinated care and therapies (physical, occupational, speech) can make a big difference.