Managing Developmental Delays and Disabilities
A Spotlight on the Scientific Statement
Better and earlier identification of cardiac neurodevelopmental delays and disabilities benefits patients through access to appropriate treatments and interventions. This article describes best practices in managing neurodevelopmental delays or disabilities in patients with CHDs, as described by Sood et al (2024).
In this section
Family Education
Clinicians should teach families about their children's developmental profile, and their ongoing risk of neurodevelopmental delay and disability. This means:
information about any identified delays or disorders
description
expected outcomes
recommended interventions
relevant resources
referral for additional medical evaluation(s) as needed, with a clear explanation for why the further testing is warranted
information about any worrisome symptoms or behaviors, and how they should be monitored
a clear plan for further developmental surveillance or evaluation, according to risk category, and an explanation for this recommendation
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Management in Infants and Toddlers
Early and appropriate intervention gives children the best chance of a positive outcome. The following practices are recommended for infants and toddlers:
referral to Early Intervention (EI) for children ages 0-35 months
enrollment in preschool
public preschool through Special Education for children ages 3-5 with disabilities that affect their ability to make progress in the curriculum
Head Start for children who meet requirements or who are filling disability quota
private preschool, public preschool in states with universal access, or public preschool for children without disabilities enrolling as peer models
clinic-based services
occupational therapy (OT)
physical therapy (PT)
speech and language therapy
developmental behavioral pediatric care
family-based interventions
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Management in School-Age Children and Adolescents
These strategies have been identified as best practices for the management of neurodevelopmental delays and disabilities in school-age children and adolescents with CHDs:
Special Education services through an individualized education plan (IEP), for students with disabilities that limit their capacity to make progress in the curriculum
504 Plans for students whose disabilities reduce their access to the curriculum, but who can make typical progress when they have equal access
neurodevelopmental evaluation to assist in accessing appropriate school services
exercise training
pharmacological treatment of psychiatric disorders
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Management in Young Adults
Appropriate management of neurodevelopmental disabilities in adulthood may include:
transition assessment, planning, and services
clinic-based services
psychoeducational programs to promote health-related quality of life
reviewing medications in consideration of effects on neuropsychological functioning
counseling on tobacco use
counseling on aerobic exercise
early collaboration of cardiologists and neurologists specializing in coagulopathies and stroke for patients with hematologic or neurological comorbidities
therapy with a psychologist
pharmaceutical treatment of psychiatric disorders
job training and vocational programs
These links are provided as resources only. Boston Children's Hospital and the Benderson Family Heart Center don't necessarily endorse all of the information on these sites.
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Long-Term Quality of Life
Patients with CHDs are at risk of neurodevelopmental comorbidities through the lifespan, which can substantially reduce quality of life if not properly managed. Through proactive planning and well-timed interventions, professionals can help patients to optimize their functioning and personal fulfillment through the course of development and into adulthood.
This content was reviewed by staff at Boston Children's Hospital's Cardiac Neurodevelopmental Program.
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