Alt text on BCH Logo

Assessment and Evaluation Collection

Young people with congenital heart defects (CHDs) are at a higher than usual risk of developmental delays and disabilities. Regular monitoring can help detect any emerging problems and guide intervention. These resources provide insight into how evaluations and assessments can help young people with heart defects. We hope you find them useful!

Several school-age girls with congenital heart defects (CHDs) sit outside at a low table, coloring with colored pencils.
Evaluation schedule for high-risk heart defects

Experts recommend that most young people with high-risk congenital heart defects (CHDs) should be evaluated at key ages. This article provides an overview of the evaluation schedule.

A baby with a congenital heart defect (CHD) lies in a hospital bed. He has an oxygen cannula, is wearing a mustard colored knit hat and a gray shirt with a bear on it, and is looking alertly to the side.
Newborn developmental consultation

Before they are discharged from the hospital, most babies born with congenital heart defects should have a developmental consultation to measure their progress so far, and to make a plan for the coming months.

A blond baby with a congenital heart defect (CHD) is wearing a diaper and sitting on a doctor's table while a neurologist listens to his heart with a stethoscope.
Infant Neurodevelopmental Assessment

When they are approximately 6 months old, most babies with high-risk congenital heart defects should have a visit with a medical professional to assess their development and neurological function.

A toddler girl with a congenital heart defect (CHD) is staring at the camera with big blue eyes.
Toddler evaluation

When they are about 18 months old, toddlers with high-risk congenital heart defects should usually have an evaluation to measure their progress, and determine what resources they need.

A mother leans over to talk to her young daughter, who has a congenital heart defect (CHD) and shiny black hair, and is wearing a red jumper over a white shirt.
Preschool entry evaluation

Many children with high-risk congenital heart defects (CHDs) should be evaluated when they are about 3 years old, which is often when they are graduating from Early Intervention (EI) and preparing for preschool. This evaluation can help determine if they should qualify for Special Education in preschool.

A dad on a farm is bending over, while his Kindergarten daughter with a congenital heart defect (CHD) climbs on his back.
Kindergarten entry evaluation

Before transitioning to formal schooling at about age 5, many kids with high-risk heart defects should have an evaluation to better understand their needs, and to set up appropriate supports in school.

Two boys with congenital heart defects (CHDs) wear purple school uniform shirts and lab glasses.
3rd-4th grade transition evaluation

Midway through elementary school, students often face new demands and expectations. An evaluation at this time can help to guide kids with high-risk congenital heart defects (CHDs).

Three middle school kids with congenital heart defects smile at the camera on a colorful playground.
Entry to middle school evaluation

Transitioning to middle school can pose new challenges and opportunities to students. Kids with high-risk congenital heart defects (CHDs) should often be evaluated at about age 11 in order to make this transition with confidence and any needed support.

Two teen boys with congenital heart defects (CHDs) wear polo shirts and lean against a white pillar.
Entry to high school evaluation

At about age 14, many kids are preparing to enter high school, and to take on increased responsibilities and expectations. At the same time, transition planning starts for students on IEPs. An evaluation at this age can provide clarity and direction.

Two young women with congenital heart defects (CHDs) sit on a bench, facing each other and chatting.
Transition to adulthood evaluation

At age 18, young people with congenital heart defects (CHDs) are often faced with major life transitions, and often an increase in independence. An evaluation can help to clarify their needs, goals, and next steps.

A young man with a congenital heart defect (CHD) sits in a chair in front of a window.
Aidan's story

Aidan and his family struggled to understand his behavior through his early childhood. When he was preparing to enter middle school, an evaluation helped them to comprehend his profile, and to meet his needs.

Two boys with congenital heart defects (CHDs) stand in front of a school building. One has a yellow shirt and pink hair and is winking at the camera. The other has brown hair and a green shirt. They have their arms around each other.
Using evaluations to plan education

When a child with a congenital heart defect (CHD) has a neuropsychological evaluation, parents and teachers can use that evaluation to update a child's education plan. Learn how here.

A doctor with a beard is standing in front of a bookcase talking about cardiac fitness assessments can help kids with congenital heart defects (CHDs).
Cardiac fitness assessment strategies

In this presentation, experts in cardiac fitness discuss strategies for assessing the fitness of kids with congenital heart defects (CHDs).

A mother holds her baby with a congenital heart defect (CHD) skin-to-skin in a hospital chair.
Developmental Care

Developmental Care is a set of practices that can improve the functioning and outcomes of babies in the hospital. One piece of Developmental Care is assessing the development of infants.

A baby with a congenital heart defect is lying on a white blanket, wearing a red and white striped shirt, and smiling.
Developmental screening tools

Doctors and nurses can use screening tools to keep track of a child's development during routine visits. Such routine screening is a critical component of neurodevelopmental care of young people with congenital heart defects (CHDs). This resource lists appropriate developmental screening tools for each age.

A girl with a congenital heart defect (CHD) has long black braids and a white shirt, and stands in front of a vine-covered wall.
Questions for caregivers to monitor development

During routine appointments, doctors and other professionals can help to monitor a child's development by asking these questions. Developmental surveillance can help to identify emerging challenges and to target intervention.

A toddler girl with a congenital heart defect (CHD) and a pink shirt sits in a black playground swing while her mother pushes her.
Surveillance, screening, evaluation

The American Heart Association (AHA) recommends that children with congenital heart defects (CHDs) have developmental surveillance, screening, and evaluation through childhood, according to their risk factors.

A teen girl with a congenital heart defect (CHD) and Down Syndrome has long brown hair and a blue shirt, and sits at a school desk writing with a pencil.
Transition assessments and plans

By the time they are 16 (or 14 in some states including Massachusetts), students with IEPs are required to have a transition assessment at school, which the team will use to write a transition plan.

A little boy with a congenital heart defect is wearing a red backwards baseball cap, a blue striped shirt, and sneakers, and is crouching on a wooden deck in front of trees.
What to know about education evaluations for kids with a CHD

Kids with congenital heart defects (CHDs) often require educational evaluations, either in school or in a clinic. This article explains what evaluators ( and parents) should know about kids with heart defects in planning and interpreting these evaluations.

A blond mother kisses her toddler son, who has a congenital heart defect, is laughing, and is wearing a mint green shirt.
Early Intervention guide

Most young children (0, 1, 2 years old) with congenital heart defects (CHDs) qualify for Early Intervention services. EI includes regular evaluation of a child's skills and progress.

Two boys with congenital heart defects (CHDs) sit at a school desk, writing with pencils.
Special Education and 504 Plans

Many kids with congenital heart defects (CHDs) qualify for help in school through either Special Education or a 504 Plan. Either service starts with an evaluation to identify their strengths and needs.

A child with a congenital heart defect (CHD) sits in a circle with her preschool classmates on a rug.
Preschool Special Education

When they turn three, children with disabilities in the United States are often eligible for Special Education preschool. The process starts with an evaluation through the school district.

A boy with a congenital heart defect (CHD) and brown hair is wearing a black, green, and grey shirt and smiling off to the side.
Wesley's story

Throughout his life, Wesley has had multiple neurodevelopmental and educational evaluations, which have helped his family to give him the care and services he has needed.

TA mother stands at a podium at Boston Children's Hospital, talking about her son with a congenital heart defect (CHD).
Ethan's story

Jessica tells the story of her late son Ethan, and how a neurodevelopmental evaluation gave her clarity and guidance when she needed it most.

© 2026 All rights reserved