Evaluation Schedule for Kids with Heart Defects

According to the American Heart Association (AHA), children with congenital heart defects (CHDs) should have regular age-based evaluations if they are in a "high risk" category for developmental delays or disabilities. Children are considered to be at "high risk" if they:

• have a heart surgery with cardiopulmonary bypass as a baby (ages 0-12 months), and/or

• have chronic low oxygen (cyanosis) as a baby (0-12 months), and/or

• have a hospitalization or procedure to treat another condition as a child (0-17 years), and have other risk factors such as:

  • genetic syndrome

  • preterm birth

  • diagnosis of congenital heart defect after birth

  • seizures surrounding surgery

  • brain injury

  • long hospital stay as a baby

  • history of cardiopulmonary resuscitation (CPR)

  • heart transplant

  • ECMO or VAD support

  • living in poverty

  • parent with limited education

  • parent with significant psychological distress

  • delayed feeding as a baby

  • delayed growth as a baby and/or toddler

  • developmental delay as a baby and/or toddler

  Families can talk with their doctors about their child's individual risk status, using the resources below.

A neurobehavioral consultation is a service provided by an expert in infant development to a baby and the baby's primary caregivers. It should take place in the hospital, before a baby is discharged.

This consultation should usually include:

1. an interview with the parents about their baby's development

2. an assessment of the baby's development

3. guidance and support for the family

During this consultation, the clinician may use a standardized assessment tool to measure how a baby behaves relative to other babies their age, such as:

• the Neonatal Behavioral Assessment Scale (NBAS)

• the Neonatal Behavioral Observation System (NBO)

• Bayley Scales of Infant and Toddler Development Screening Test

During this consult, clinicians talk to parents about their concerns and goals, and connect them with resources. They create an individualized plan based on the baby's strengths, and weaknesses, designed to help the baby to reach new milestones.

Babies with congenital heart defects should usually have their first outpatient developmental assessment when they are approximately 6 months old. This appointment is often a neurological assessment, and is conducted by a medical professional such as a doctor or nurse. This assessment may include:

• an interview about the family's history, strengths, challenges, and goals

• questions about the baby's development so far

• discussion of sleep, feeding, and stressors

• a hearing test

• a physical exam focusing on the baby's muscle tone, symmetry, and gross motor skills

• measures of the baby's growth, including head circumference

Based on this assessment, a clinician will help a family to support their child's development, and to connect the family to helpful resources. In some cases, a baby may be referred for additional medical tests.

Toddlers with high-risk congenital heart defects should usually be evaluated when they are about 18 months old. Using standardized tests and parent interviews, the evaluator can test how a toddler:

• thinks, learns, and understands

• solves problems

• plays

• uses and understands language

• moves and uses their body

• participates in daily activities and self-care

• connects with other people

• sleeps and eats

At this evaluation, the clinician will often use tools such as:

• the Bayley Scales of Infant and Toddler Development

• the Infant Toddler Social-Emotional Assessment (ITSEA)

• the Modified Checklist for Autism in Toddlers (MCHAT)

• the Receptive-Expressive Emergent Language Test (REEL)

As always, the clinician will select tests based on an individual familys needs and questions.

Together, parents and evaluators can identify a child's and a family's strengths, challenges, values, and goals. The evaluator can connect the family to resources, and give them strategies to help the child to meet their next developmental skills.

Most children with high-risk congenital heart defects should be evaluated when they are about three years old. In the United States, children at this age are often making the transition from Early Intervention (EI) to public or private preschool. This evaluation can often help determine if a child may be eligible for Special Education and an individualized education plan (IEP).

A comprehensive neurodevelopmental evaluation can help parents, doctors, and teachers to target a child's emerging needs. The evaluator will often measure a child's:

• thinking, understanding, and problem solving

• fine motor skills

• life skills and self-care skills

• emotions and self-regulation

• social skills

• attention and executive functioning

• behavior

• language and communication

When testing 3-year-olds, evaluators usually use a mix of interviews and standardized assessments. Tests can include measures such as:

• Wechsler Preschool and Primary Scale of Intelligence (WPPSI)

• Beery Test of Visual-Motor Integration (VMI)

• Adaptive Behavior Assessment Scale (ABAS)

• Social Responsiveness Scale (SRS)

• Behavior Rating Inventory of Executive Function (BRIEF)

Evaluators adjust tests based on an individual child's needs, and a particular family's questions and goals.

Children with high-risk congenital heart defects should generally be evaluated before transitioning to formal school, which is usually when they are about 5 years old. Formal schooling presents new opportunities and challenges for kids with heart defects. This evaluation can help parents, teachers, and medical providers to plan for any services or supports the child may need in school.

At this evaluation, a clinician will often measure a child's:

• thinking, learning, understanding, and problem solving

• early school skills and knowledge

• visual-motor skills, such as drawing and copying

• attention and executive functions

• behavior

• social skills

• life skills

• language

Evaluators usually use a combination of standardized assessments, surveys, and conversation with a child and their family. They may use tests such as:

• Wechsler Preschool and Primary Scale of Intelligence (WPPSI)

• Bracken Basic Concepts Scale (BBCS)

• Beery-Buktenica Visual-Motor Integration (VMI)

• Adaptive Behavior Assessment Scale (ABAS)

• Behavior Assessment System for Children (BASC)

• Social Responsiveness Scale (SRS)

• Behavioral Rating Inventory of Executive Function

Evaluators and parents can use the findings from this evaluation to help prepare a child for success in a formal school environment.

As children with high-risk congenital heart defects move from early to later elementary school, they face new expectations that can be exciting but also difficult. Later elementary school can require students to:

• read independently to learn information

• organize more of their own materials

• solve problems with multiple steps

• solve problems with more than one possible solution

• apply their learning to new situations

• show their learning and explain their ideas through independent writing

• collaborate and communicate with other children

• sit still and stay quiet for extended periods of time

For some kids with congenital heart defects, the increased demands of later elementary school can expose weaknesses in underlying skills. An evaluation around 3rd or 4th grade can help to identify possible problems, and to plan timely and targeted interventions.

At the mid-elementary evaluation, evaluators may measure a child's:

• thinking, understanding, and problem solving

• memory and learning

• reading, writing, and math

• attention and executive function

• fine motor skills

• adaptive life skills

• emotions and behavior

• social skills

Evaluators usually use a combination of standardized tests, surveys, and conversation with a child and their family. They may use tests such as:

• Wechsler Intelligence Scale for Children (WISC)

• Wechsler Individual Achievement Test (WIAT)

• Behavior Rating Inventory of Executive Function (BRIEF)

• Delis-Kaplan Executive Functioning System (DKEFS)

• Wide Range Assessment of Memory and Learning (WRAML)

• Adaptive Behavior Assessment Scale (ABAS)

• Behavior Assessment Scale for Children (BASC)
  Social Responsiveness Scale (SRS)

Families can use the evaluation results to better understand their child, and to provide them with appropriate support both at home and school.

The move from elementary to middle school can prove difficult for some kids with congenital heart defects (CHDs), and a well-timed evaluation can help parents and providers to adjust a child's supports to prevent problems. Middle school often pushes children to use skills that may be delayed in kids with heart defects, such as:

• increased abstract thinking

• analyzing texts for big ideas

• being flexible and staying organized across multiple classrooms

• planning and completing more complicated assignments with multiple parts

• organizing and managing school materials and schedules

• being increasingly independent at home

• understanding and navigating more complicated social relationships

Before a child transitions to middle school, an evaluator may want to measure their:

• thinking, understanding, and problem solving

• reading, writing, and math

• learning and memory

• attention and executive function

• social skills

• use and understanding of language

• fine motor skills

• behavior

• emotion, mood, and self-regulation

Evaluators select tests based on an individual child's needs and goals. They may use tests such as:

• Wechsler Intelligence Scale for Children (WISC)

• Wechsler Individual Achievement Test (WIAT)

• Behavior Rating Inventory of Executive Function (BRIEF)

• Delis-Kaplan Executive Functioning System (DKEFS)

• Wide Range Assessment of Memory and Learning (WRAML)

• Adaptive Behavior Assessment Scale (ABAS)

• Behavior Assessment Scale for Children (BASC)
  Social Responsiveness Scale (SRS)

Through this evaluation, the child, their parents, and their providers can work together to determine how a child can be set up to succeed in middle school.

As kids with heart defects prepare to move to high school, an evaluation can help them to refine their goals and needs, and to plan for the final years of their education. High school learning is more complex than middle school learning, and students are expected to be more independent in their studies. Students transitioning to high school face new challenges such as:

• independently connecting abstract ideas across domains

• evaluating abstract and philosophical ideas

• managing a complicated individual schedule with multiple classes

• studying for cumulative tests

• planning and executing long-term assignments

• independently identifying the need for help, and seeking it

• increased independence at home and in the community

• intense and complicated social relationships

• exposure to high-risk peer behaviors

An evaluator can work with a teen and their parents to ease the transition to high school, and to help the teen get on the best path. For students who receive Special Education, the transition to high school should also coincide with a school Transition Assessment and Transition Plan.

Evaluators often want to measure a teen's:

• thinking, understanding, and problem solving

• reading, writing, and math

• learning and memory

• attention and executive function

• fine motor skills

• social skills

• emotions, mood, and self-regulation

• adaptive and life skills

• behavior

They may use a combination of conversations, surveys, and formal tests, including:

• Wechsler Intelligence Scale for Children (WISC)

• Wechsler Individual Achievement Test (WIAT)

• Behavior Rating Inventory of Executive Function (BRIEF)

• Delis-Kaplan Executive Functioning System (DKEFS)

• Wide Range Assessment of Memory and Learning (WRAML)

• Adaptive Behavior Assessment Scale (ABAS)

• Behavior Assessment Scale for Children (BASC)
  Social Responsiveness Scale (SRS)

Teens can usually participate in the discussion of their evaluation findings, and help to consider how their unique profile fits in with the demands and opportunities of school, friends, home, and work.

The transition to legal adulthood brings a host of changes, challenges, and possibilities for young people. Teens with high-risk congenital heart defects (CHDs) should often be evaluated at this age to assist in planning for their next steps.

Most young adults with congenital heart defects are preparing for independent living, and movement into post-secondary education or the work force. They are often faced with new responsibilities such as:

• independent management of schooling or work

• budgeting and financial planning

• independent management of their schedule

• paying rent and managing a household

• relationships with roommates, landlords, bosses, colleagues, and professors

• buying and preparing food

• making and attending doctor's appointments, filling prescriptions and taking medicines, handling medical emergencies, following medical guidance

• transferring to adult healthcare

An evaluator can help a young person and their family to identify their strengths and weaknesses, and to connect them to helpful resources.

Some young adults with heart defects are not preparing to live independently. For these young adults, transition to legal adulthood still brings many changes and opportunities. Families and young people may face new challenges such as:

• establishing guardianship

• arranging healthcare proxies

• making decisions about 18-22 programs

• preparing to transition out of public schooling

• finding adult disability services

• thinking about living arrangements, supportive work environments, and inclusive education options

• transferring to adult healthcare

Regardless of a young person's circumstances, an evaluation can help the young adult and their family to make an informed plan for their future.

Some adults with congenital heart defects (CHDs) face ongoing or emerging questions about their thinking, feeling, and functioning. They may benefit from a neuropsychological evaluation to gain a better understanding of how their brain and body work, and to plan for their future with greater insight.

Adult evaluations are generally highly individualized, and based on a person's questions, goals, and needs. They may be conducted in a pediatric or adult clinic, and could measure a person's:

• thinking, understanding, and problem-solving

• learning and memory

• reading, writing, and math

• attention and executive function

• changes in functioning over time, as compared to earlier testing

• fine motor skills

• visual-motor coordination

• social skills

• language and communication

• life skills and job skills

Adults with questions about their psychological or neuropsychological functioning should talk with their care team about scheduling an appropriate evaluation.

Regular age-based evaluations can help families feel confident that they know how their child is developing, and that they will catch any emerging problems when intervention is early, and most likely to be effective. Even when a child is developing typically, evaluations can provide families with reassurance and peace of mind, knowing that despite early medical challenges, their child with a congenital heart defect is thriving.

This content was reviewed by a psychologist at Boston Children's Hospital.

Developmental care is best when it is local. Families local to Boston can schedule evaluations with the Cardiac Neurodevelopmental Program (CNP). Families from other regions can use the link below to find their care team.