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Early Intervention and CHDs: Discharge to Age 3

Ages 0 - 3 Years

In the United States, babies and toddlers with congenital heart defects (CHDs) requiring intervention should always qualify for Early Intervention (EI), a free or affordable government-provided support program for children at risk of developmental delay or disability. As a medical provider, you should refer all babies with CHDs to EI prior to initial hospital discharge, or as soon as possible thereafter.

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What is Early Intervention?

Early Intervention (EI) is a support program for young children (ages 0, 1, and 2) who have risk factors, including chronic illnesses or disabilities. Young children with complex heart defects should always meet qualification criteria.

EI is a government program through the Individuals with Disabilities Education Act (IDEA), and is free or affordable to families.

It offers families developmental services such as:

Family counseling
Parent training
Physical Therapy (PT)
Occupational therapy (OT)
Speech and language therapy
Devices or tools that the child needs
Help with hearing
Medical/nursing care
Nutrition help
Help from a psychologist
Play that supports development

Services are provided in the child's "natural environment," which generally means their home or daycare.

Referring to EI

Medical professionals can refer a family to EI by directly contacting their local EI agency on behalf of the family. Doctors should provide the family with clear documentation of the child's medical diagnoses in order to streamline the process.

Doctors can find their local program through the Center for Disease Control (CDC).

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.

The below 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.

References

Brosig, C., Butcher, J., Butler, S., Ilardi, D. L., Sananes, R., Sanz, J. H., ... & Ware, J. (2014). Monitoring developmental risk and promoting success for children with congenital heart disease: Recommendations for cardiac neurodevelopmental follow-up programs. Clinical Practice in Pediatric Psychology, 2(2), 153.https://psycnet.apa.org/record/2014-24042-002

Epley, P. H., Summers, J. A., & Turnbull, A. P. (2011). Family outcomes of early intervention: Families’ perceptions of need, services, and outcomes. Journal of Early intervention, 33(3), 201-219.https://www.erikson.edu/wp-content/uploads/2017/10/Family-Outcomes-of-Early-Intervention-Families-Perceptions-of-Need-Services-and-Outcomes-1.pdf

Hebbeler, K., Spiker, D., Bailey, D., Scarborough, A., Mallik, S., Simeonsson, R., & Nelson, L. (2007). Early intervention for infants and toddlers with disabilities and their families: Participants, services, and outcomes. Menlo Park, CA: SRI International, 116.https://www.sri.com/wp-content/uploads/2021/12/neils_finalreport_200702.pdf

Scarborough, A. A., Spiker, D., Mallik, S., Hebbeler, K. M., Bailey Jr, D. B., & Simeonsson, R. J. (2004). A national look at children and families entering early intervention. Exceptional children, 70(4), 469-483.https://d1wqtxts1xzle7.cloudfront.net/86321331/00144029040700040620220523-1-1hlepfv-libre.pdf?1653278921=&response-content-disposition=inline%3B+filename%3DA_National_Look_at_Children_and_Families.pdf&Expires=1714158861&Signature=EIsnr9Z1Z3e56nnKz9C-K08piZpT8IBLnnb7uXy7ynugF58tJAqUousNose0PtVKXDa34tz0wu~uS7RX44qsEto7B2sIflMXXCfviWgbLYybb2r8DegGs0Gx2Us6JbScwkDmuLyOK05tmzzcVkYQ66m-KtE~-S4Gnz8rvRbHvGDqq639AGA8Dl2oyfzRdibTeOVk5xh~Kfvz4-ZXT5g2mu1r1ZJazelgml2TzvHrfidn3DMtp7Kh6SsZhu5pIE0qffHVZNrWc5nhNiQyrbpt4VJeaXRy7xZdtUJ~FYDJ6OE1Yd3E-URLCvRaf3I-nZM2qUmGuYMjlV5w8TW1VQZNZQ__&Key-Pair-Id=APKAJLOHF5GGSLRBV4ZA

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