What Educators Should Know about CHDs

Children with congenital heart defects are often exposed to numerous risk factors, each of which can affect their capacity to engage and learn in a classroom.

Common risks include:

• placental insufficiency

• one or more open-heart surgeries

• one or more heart catheterizations

• hospitalizations

• periods of oxygen deprivation

• frightening medical experiences

• medications that affect brain development

• exposure to chemicals that affect brain development

Some children with heart defects have conditions that place them at even higher risk, such as:

• stroke or seizure surrounding a surgery

• genetic differences that affect brain development

• chronic oxygen deprivation

• a need for mechanical support of basic life functions

• extended hospital stays

• a need for treatment of other conditions that are secondary to their heart disease

• living in poverty, or other psychosocial stressors

While each child has a unique constellation of risk factors, this population as a whole has faced more adversity than most students in most educational environments. Educators should be sensitive to their difficult histories, even when students enter the classroom appearing robust and well-adjusted.

Just as students with heart defects face complex risks, they also present with complex learning profiles. Many students have strikingly uneven profiles, with marked strengths and weaknesses. In many cases, educators must think critically about how a student's profile influences learning, and how educators can teach them effectively.

Students with heart defects can have well-recognized and well-understood learning disabilities just like any other student, including dyslexia (SLD in reading), dyscaclulia (SLD in math), and dysgraphia (SLD in writing). There is not yet evidence that they have higher rates of these well-known SLDs than other students.

However, students with heart defects also often struggle with other aspects of learning. Their deficits interact with each other, and can be hard to disentangle. Teachers can anticipate and monitor for the challenges often associated with heart defects, so that they can identify problems early and intervene effectively.

Many students with heart defects have average or above-average cognitive skills. However, students with heart defects are more likely than other students to have cognitive below the average range. It may be helpful to picture a bell curve shifted slightly to the left: plenty of students still fall at or above the average mark, but a larger percentage than is typical fall below this level.

While cognition overall is lower for some students, cognition is also unusually variable for many students. Students with heart defects often have marked discrepancies among domains of intelligence. For example, verbal reasoning is often an area of strength, whereas visual spatial reasoning, working memory, and processing speed are often areas of weakness.

Educators should be aware that among students with heart defects, learning problems may stem from a foundational deficit in a student's capacity to understand, solve problems, or remember.

Attention-deficit hyperactivity disorder (ADHD) is common in the general population, and is even more prevalent among learners with heart defects.

ADHD affects students' ability to:

• focus their attention

• sustain attention

• shift attention

Learners with ADHD always display characteristics of inattention and distractibility, and may or may not display hyperactivity, depending on their subtype.

Students with ADHD often struggle with tasks such as:

• listening to directions or lessons

• keeping their body still and seated

• controlling impulses

• starting and completing non-preferred tasks

• shifting from one activity to another when expected

• staying quiet when expected

• working carefully, and both noticing and correcting mistakes

• demonstrating their knowledge on assessments

When unmanaged, ADHD can negatively affect a student's academic achievement, social functioning, and self-concept.

Executive function challenges are very common among students with heart defects. Since executive functioning develops gradually over the course of childhood and into adulthood, deficits in executive functioning may not become apparent until a student is in later elementary school or middle school, and demands increase.

Students with executive function deficits often struggle with tasks such as:

• organizing their desk, binder, locker, and materials

• bringing homework back and forth

• remembering to turn in assignments

• planning out multi-step or multi-day assignments

• being on time

• starting work when expected

• sustaining attention through challenging tasks

• completing tasks they started

• controlling impulses

• being flexible in their thinking, problem-solving, and behavior

• monitoring how well they are doing

• reflecting on how well they did

• remembering what they need to do

• keeping track of their possessions

• prioritizing the most important tasks

In the middle and upper grades, educators usually expect students to be more independent in their learning, and schools reduce executive functioning scaffolds and supports. Many students with heart defects find themselves floundering, unable to meet the new demands for organization and planning.

While basic reading is often not impaired in students with heart defects, reading comprehension is often an area of difficulty.

Many students with heart defects can read fairly accurately and fluently, but then struggle to make meaning of what they read. In some cases, students struggle with even literal comprehension of a text. More commonly, students struggle to make inferences, intuit intention, appreciate abstract concepts, and synthesize big ideas.

Reduced reading comprehension can have a profound effect on a student's achievement, especially in the middle and upper grades, when they are increasingly expected to learn from independent reading.

Students with heart defects often have pronounced challenges with visual spatial reasoning, which means they have trouble accurately picturing and manipulating physical objects and spaces in their mind.

Visual spatial deficits can affect students across subject areas.

Students with visual spatial deficits can have trouble with tasks such as:

• understanding number concepts

• understanding shapes and geometry

• using number lines

• copying words or pictures off a board, or sometimes from a near-point copy

• making or interpreting maps, graphs, diagrams, and charts

• understanding and using graphic organizers

• organizing their work on a page

• organizing their materials in a binder, locker, backpack, or desk

When a student is struggling, teachers often try to help by making the learning visual. This strategy may not be effective for students with visual spatial deficits.

Many students with heart defects have trouble understanding big ideas and underlying patterns. This can also be described as poor cohesion or integration of information, and is what people mean when they say someone "can't see the forest for the trees."

At school, this means that students often learn pieces of information as isolated, arbitrary facts, and do not necessarily notice how the information fits together and makes sense. As a result, their learning is more fragile and fragmented, and they are often required to use rote memory when other students would integrate new information into an existing schema.

Students with this type of thinking can have trouble with tasks such as:

• recognizing and understanding math patterns and rules

• noticing how math procedures and concepts are related

• noticing patterns and cause-and-effect in studying history

• finding the theme of a text

• finding the main idea of a text

• noticing when words have a common root

• understanding why things happen in science

• making connections across texts, activities, and curriculum areas

• discovering spelling patterns

In many cases, students are capable of learning big ideas, and are able to synthesize and make sense of information. However, they often require direct and explicit instruction in order to accomplish such integration, and teachers cannot rely on them to construct such learning independently.

Math is a challenging subject for many students with heart defects, often due to underlying weaknesses in visual spatial reasoning, processing speed, and working memory.

Students with heart defects can show impairment in any aspect of mathematical thinking and learning, including understanding number concepts, performing calculations, remembering and applying procedures, and applying knowledge to solve problems in context.

Word problems are especially tricky for students who also have reading comprehension deficits, but students' challenges with word problems often reflect true math impairment, and not just reading impairment.

Writing is a sort of "perfect storm" for many students with heart defects, in that it requires the integration of multiple areas of potential deficit, such as:

• handwriting

• task initiation

• sustained attention

• word retrieval

• sentence formulation

• planning and timing of complex tasks

• organization of ideas

• physical organization of content on a page

• focusing on a main idea

• imagining other viewpoints

For many students with heart defects, writing is their hardest academic subject. Even when students are largely successful in other areas of the curriculum, they may still require additional supports to demonstrate their potential in writing.

Working memory is often an area of relative weakness among students with heart defects. This means they have trouble consciously and intentionally holding pieces of information in their mind, so that they can use the information to solve problems or perform tasks.

Poor working memory can make it hard for students to:

• solve math problems in their head

• plan and executive multiple-step procedures

• decode longer unfamiliar words

• remember the content of what they are reading

• construct grammatical sentences

• organize their ideas in writing

• follow directions, especially multi-step directions

• copy information or images

• take notes

• learn new information from only hearing or seeing it once

• participate in classroom discussions or debates

Working memory deficits can contribute to problems in many areas of the curriculum, and often interact with other deficits.

Students with heart defects often have slower than typical processing speed, which means their brain takes longer to perceive, understand, and respond to information.

Processing speed does not indicate how well a student can understand concepts, generate ideas, or perform tasks, it simply indicates how quickly a student can do so.

Some students have slow processing speed in addition to further cognitive deficits, while other students have intact reasoning and memory, but slow processing. They require extra time to integrate information and formulate responses.

Students with heart defects are at risk of social and emotional deficits. Some students meet criteria for an Autism Spectrum Disorder (ASD), but many other students have social challenges but do not meet criteria for a diagnosis.

Common social concerns include:

• relative immaturity for their age

• impulsive behavior that bothers other kids

• reduced social cognition

• rigid, black-and-white thinking

• insistence on certain rules and routines

• difficulty understanding different perspectives

• social anxiety

• trouble understanding abstract concepts and nonliteral language

• slower processing, and difficulty keeping up with conversations

• difficulty relating because of unusual life experiences

Students with heart defects sometimes report feeling lonely, and wishing they had more friends. They may have little insight into their social challenges, or they may have insight, but be unsure how to be more successful. Social difficulties can interact with academic difficulties, and severely harm a student's self-concept and sense of emotional safety.

Students with heart defects are more likely than their peers to have symptoms of anxiety and trauma-related stress. In many cases, their symptoms clearly stem directly from a history of frightening medical experiences. In other cases the connection isn't as obvious, but their brain may be more vulnerable to anxiety because of their illness and history.

When a child has a heart defect, the whole family is profoundly affected. Students with heart defects likely live within a family system in which parents and children experience high levels of stress plus often trauma-related symptoms and/or depression.

Mental health concerns can shape how a child engages with school.

Anxiety can often contribute to challenges such as:

• school avoidance

• inattention

• hyperactivity

• somatic symptoms such as headache and stomachache

• work avoidance

• perfectionism

• emotional reactivity

• avoidance of social interaction

• getting into fights or arguments

• bolting

• freezing

Children with medical trauma histories may exhibit additional behaviors that can interfere with school, such as:

• avoiding certain sounds, smells, or experiences, such as beeping noises, hand sanitizer, or the nurse's office

• acting scared of certain sensations or experiences, such as hearing an ambulance siren, smelling hand sanitizer, seeing a latex glove dispenser, hearing the school bell, hearing or seeing someone crying, or being touched unexpectedly

• wanting to be positioned so they can see everyone in a room

• freezing when they feel scared, or when something is unexpected

• becoming internally distracted by memories

• being very protective of personal space and personal agency

• refusing to lie down in the nurse's office

Educators need to talk with families about the nature of a child's anxiety and/or trauma, so that they can understand how to support students through the day, and allow them to both feel safe and fully engage.

Some children with heart defects have ongoing medical concerns that can affect their experience and engagement at school. Teachers should be aware of any physical limitations or symptoms the child is experiencing, and how they might influence a child's day in the classroom.

For example, a child may have:

• reduced endurance, and progressive fatigue as the day proceeds

• pain that affects concentration, mood, and/or comfort to perform certain actions

• medication that requires frequent use of the bathroom

• challenges with eating and nutrition

• poor sleep

• nausea, vomiting, and/or diarrhea

• exercise restrictions

• reduced strength, balance, flexibility, and/or coordination

• breathing problems

• toileting problems

When educators appreciate the full scope of a child's physical experiences, they can better accommodate their needs in the classroom.

As educators, we have a legal responsibility to meet children's needs so that they can make meaningful progress in the curriculum. But I would argue that we also have a deeper, ethical responsibility: to see children as full people, to meet them wherever they are, and to take them as far as they can go.

Students with heart defects are often complicated and atypical learners. You can't grab a book or packaged curriculum and be confident that you are meeting their varied needs. Instead, you need to take the time to learn about and understand their unique profile, carefully consider how it affects their interaction with curriculum, and construct a teaching approach that is adapted to their wonderfully unusual brain.

While this approach can be challenging, it is also immeasurably rewarding. It helps you to grow as a teacher, and it gives students the chance to feel seen and validated, and to achieve success despite their difficult histories.

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

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