Non-Medical Professionals
Are you a professional who works with a young person with a CHD? You've come to the right place.
Kids with CHDs have complex needs, and many of their needs cannot be met by their medical providers. In order to thrive, many kids with CHDs need the expertise and support of a multidisciplinary team, often including educators, allied health professionals, psychologists, social workers, BCBAs, Child Life Specialists, and/or music therapists.
We are here to facilitate your critical work.
Resources Spotlight
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Connecting CHD profiles with developmental support
Young people with complex heart disease are survivors, but their physical resilience often belies their ongoing challenges.
Kids with CHDs have often faced multiple risks, including invasive medical procedures, long hospitalizations, periods of oxygen deprivation, and health events that can cause brain injury. While most kids appear well despite a difficult history, they often have persistent struggles across varied domains.
Professionals can help by monitoring development, and targeting care.
Understand the connection between CHD and neurodevelopment
CHDs relate to development in multiple ways. For example:
genetic conditions can cause differences in both the heart and the brain
the placenta may not adequately deliver oxygen and nutrition to a fetus
CHDs can limit the oxygen delivered to the brain
during and right after surgeries, kids are at high risk of strokes and seizures
medications can influence brain development
chemicals used in medical devices can influence brain development
hospitalization causes stress, reduces opportunities for normal learning, and affects social interactions
having a chronic illness can cause anxiety or even trauma in the whole family
Collectively, these and other adverse experiences often lead to neurodevelopmental delays or disabilities in the population of people with CHDs.
Best practices in serving kids with CHDs
Young people with CHDs often have unusual and uneven profiles, and multiple interacting sources of risk. Experts in the field of cardiac neurodevelopment are working to discover the best ways to serve this population.
As you learn more about the population of kids with CHDs, we urge you to think critically about how you can best serve them in your own practice.
Want to share your learning with your professional community? Email CNPschedulingandquestions@childrens.harvard.edu to tell us.
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Academic Assessment of Students with CHDs
Students with CHDs often have unique learning profiles. In this article, Dr. Ullman Shade describes what evaluators should know about students with congenital heart diseases, and how they can validly measure their academic achievement.
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Psychological Treatment of Adolescents with CHDs
Psychologist Dr. Elisa Bronfman describes how therapists can effectively treat teens and young adults with CHDs and psychiatric conditions.
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Multidisciplinary Individualized Developmental Care
When Developmental Care practices are used within a hospital nursery, babies achieve better developmental outcomes. Psychologist Dr. Samantha Butler describes a model of implementing Developmental Care within the CICU.
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What Educators Should Know about Students with CHDs
Approximately 1 in 100 students has a congenital heart defect (CHD), and for many of these students, their heart condition affects their learning. Despite this high prevalence, teacher training programs rarely prepare educators to anticipate and meet the needs of the CHD population.
Students with CHDs are diverse, but many share common learning traits. When educators know what to look for, they are better prepared to meet students' needs promptly and effectively.
Help connect families to care
Developmental care is usually best when it is local. Explore below to find a cardiac neurodevelopmental followup program that is close to the families you serve.
Don't see one? Check back soon: new programs are starting every year.
In the meantime, know that by supporting children's development, you are taking important steps to provide them with the comprehensive neurodevelopmental care they need.
Supporting each child’s development
the right intervention for the right person at the right time
Young people with CHDs have diverse needs, and often require multiple interventions at each stage of development. As a professional, you can help by anticipating and identifying their needs, and helping to connect them to the care they need to thrive.
Below are several highlighted interventions. Discover more interventions through our Power of Intervention page, or Resource Guide.
Do you want to tell us about an intervention that works for you? Email CNPschedulingandquestions@childrens.harvard.edu