Helping heart patients overcome developmental issues

Focus on Boston Children's Cardiac Neurodevelopmental Program

If you have a child with congenital heart disease (CHD), you’re likely well-versed in the medical issues your child may face. But many parents don’t realize their children born with CHD may also be at risk for developmental problems.

“Many children with CHD encounter early challenges that can include lack of oxygen, stroke or seizure, and medical trauma,” says Dr. Catherine Ullman Shade, director of education for the Cardiac Neurodevelopmental Program (CNP) at Boston Children’s Hospital. “In addition, many of these children have genetic diagnoses that can also lead to developmental problems. Given these risk factors, children with CHD are much more likely than other children to face developmental delays or disabilities.”

The Cardiac Neurodevelopment Program provides assessment and counseling for children born with CHD. Ullman Shade answers some of the most common questions she gets about the developmental challenges of kids with CHD, and offers some helpful tips for parents.

What are some of the developmental challenges kids with CHD face?

Every child is unique, and while some children with CHD deal with profound developmental challenges, others show no signs of developmental delays at all.

Babies and toddlers with CHD often have delays with physical motor skills, and may be late to meet milestones such as sitting, standing and walking. Feeding and sleeping are often challenging, and many children struggle with food aversions, disrupted sleep schedules and poor growth.

In the preschool years, attention issues often become evident, as well as concerns around behavior and self-regulation. Many children with CHD have some difficulties at school, especially as they get older. They often struggle with visual spatial skills and math, and have trouble staying organized, paying attention and writing. Some also struggle with the sort of complex thinking that is expected in the upper grades, and many have slow and messy handwriting.

Children and adolescents with CHD are at also at increased risk of psychological problems including attention deficit hyperactivity disorder (ADHD), anxiety and depression. Many have difficulty with social skills and some meet criteria for autism spectrum disorder (ASD).

How can families identify developmental challenges early?

The American Heart Association recommends that all children with complex CHD should have formal evaluations at specified ages to allow early detection of development issues. All children with CHD who have had heart surgery should have evaluations at:

  • infancy (birth – age 1)
  • early childhood (ages 1- 3 1/2)
  • transition to kindergarten (ages 3 1/2 – 5)
  • middle childhood (ages 11-14)
  • high school/transition to adulthood (ages 15-18)

Children with identified delays or disabilities may need assessments more often to monitor their progress and update recommendations as needed.

What happens during an evaluation?

It depends on the age and developmental level of the child, but an evaluation should generally measure:

  • motor skills
  • cognitive or thinking skills
  • adaptive skills
  • social and emotional skills
  • language skills
  • academic progress

What resources are available to help kids with CHD who have developmental challenges?

Regardless of the challenges they may face, all children with CHD are capable of development, learning and progress. The sooner we identify their specific challenges, the sooner we can help the child overcome them. Clinicians at the Cardiac Neurodevelopmental Program partner with families, parents and their medical care teams to help children access appropriate services in a timely manner.

Young children with CHD often benefit from Early Intervention (EI), which is a public service available to infants and toddlers at risk. Through EI, children receive services such as placement in an integrated preschool, physical therapy (PT), occupational therapy (OT), speech/language services and social skills groups.

Once children reach school age, many qualify either for an Individualized Education Plan (IEP) or a 504 Plan through their school districts. Depending on their needs, they may receive services such as specialized small-group instruction, PT or OT, meetings with a school psychologist, social skills training, a behavior plan, or help with organization and executive functioning. Some children require services out of the school setting, such as home applied behavior analysis (ABA), or meetings with a private therapist, tutor or counselor.

How can the Cardiac Neurodevelopmental Program help?

Beyond formal services, children with CHD have the same needs as all children, including opportunities for safe exercise, recreation and fun. CNP clinicians can help connect families to resources such as specialized camps, clubs and classes, as well as hospital-sponsored events such as horseback riding at CNP’s Day at the Farm.

When the developmental needs of children with CHD are well-understood, families and providers can meet children where they are, and bring them as far as they can go, so that all children can feel successful and grow into their unique potential.

Register for the Cardiac Neurodevelopmental Family Symposium.