brief

Cheat Sheet: CHD Neurodevelopment Risk Categories

A Scientific Statement Quick Reference

Providers who care for kids with complex CHDs need to understand each patient's relative risk for developmental delay or disability. Knowing risk categories can help you to target resources and follow the AHA recommendations. This tool summarizes the risk categories as presented within the 2024 Sood et al Scientific Statement, and can serve as a quick reference in your daily practice.

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In this section

Is a CHD patient at high risk of neurodevelopmental delay or disability?Targeting Response to Need You might also like:

Is a CHD patient at high risk of neurodevelopmental delay or disability?

Cardiac surgery with cardiopulmonary bypass in infancy?
IF YES, HIGH RISK
Chronic cyanosis in infancy?
IF YES, HIGH RISK
Intervention and/or hospitalization before age 18 because of a condition secondary to their heart defect? AND at least one of:

Pathogenic genetic finding?
Low fetal oxygen/nutrient delivery?
Preterm birth? (<37 weeks, or <39 weeks for single ventricle)
Postnatal diagnosis of CHD and neonatal cardiac surgery?
Perioperative seizure?
Significant brain injury?
Extended postoperative stay? (>14 days)
Cardiopulmonary resuscitation?
ECMO or VAD support?
Heart transplant?
Household poverty, neighborhood poverty, and/or maternal education < high school?
Parent anxiety, depression, PTSD, and/or clinicially-significant stress?
Tube feeding after discharge?
Early growth failure?
Diagnosed developmental delay or disability?

IF BOTH YES, HIGH RISK

Targeting Response to Need

All patients who are determined to be at high risk should be referred for a developmental evaluation, and infants and toddlers (ages 0-35 months) at high risk should be referred to Early Intervention (EI). Some patients also require medical referrals for specific developmental concerns such as suspected hearing loss, genetic diagnosis, neuromotor abnormalities, or feeding challenges.

Risk stratification of patients with congenital heart defects should always occur before initial hospital discharge, and then periodically over the course of development. Patients' risk categories can change as they develop, and patients initially deemed low-risk may become high-risk later in life.

This tool is meant to be a quick reference only, and clinicians are encouraged to consult to full scientific statement for greater elaboration of risk categories and associated responses.

All patients who are determined to be high risk should be referred for a developmental evaluation, and infants and toddlers (ages 0-35 months) at high risk should be referred to Early Intervention (EI).

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

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.

References

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